Soon after Charlie was born I noticed his back was a ‘funny shape’, but I was afraid to say to anyone in case my fears came true. I was so anxious inside.
When Charlie was just 3 months old my husband was feeding him, and while burping him he noticed his back just wasn’t right. He told me his concerns and it was at that moment my fears became reality.
We saw the pediatrician at our local hospital who agreed that Charlie’s back looked ‘off’, and she arranged an X-ray for him. After the X-ray I was brought into the pediatricians office. I could immediately see on her screen that there was a curve in Charlie’s spine. I was absolutely devastated.
We were then referred to the main Orthopedic hospital in Northern Ireland and we were advised to watch and wait for the next 3 months.
Three months passed and we were back for repeat X-rays to see if the curve in Charlie’s spine had progressed or not. He was just 7 months old, and X-rays showed his curve had progressed from 28 degrees to 42 degrees in just 3 months. We were absolutely devastated. All I could think about was “Charlie needs his little spine to grow”.
We were told Charlie needed to go into a plaster jacket that would be changed under general anesthesia every 6 months, until he would be old enough for the first of many invasive spinal surgeries. We cried for days. We never wanted this for our baby.
Once the news sunk in, we began to research. We wanted to see what the plaster jacket would look like. After joining the Infantile Scoliosis Outreach Programs (ISOP) Facebook Group, I quickly saw there were different types of casts! That’s when I began to question what these differences were. ISOP’s Facebook Group taught me that some casts are designed to hold the curve while others are designed to correct the curve gently.
For us, it was a no brainier. We had to choose MGGC. We wanted to try to correct the curve in Charlie’s spine, and potentially avoid him needing surgery.
After many phone calls, emails and endless days and nights of research, we soon realized that MGGC was not offered here in the U.K. or Ireland. The closest hospital to offer this treatment was Shriner’s Hospital for Children in Philadelphia, USA.
Yes it was a huge distance, but we were willing to do whatever it took to give Charlie the best chance to avoid invasive spinal surgeries.
Thankfully after a very speedy application and approval process, Charlie was accepted for treatment at Shriner’s Philadelphia.
We traveled from Ireland to Philadelphia in April 2016 when Charlie was just 9 months old. We met with the incredible team who would be treating Charlie, and we instantly felt a huge relief knowing he was in the hands of an experienced Doctor who specialized in Early Onset Scoliosis and Mehta Casting.
Charlie had an MRI of the full spine which thankfully came back normal, and he was ready to begin treatment. His curve was now 45 degrees, and he got his first cast under general anesthesia. As parents it was a shock for us to see our tiny little baby wrapped in a plaster cast. But after the first day we soon realized that this special cast wasn’t going to hold Charlie back from meeting his milestones and doing what he wanted.
Over the next 2 years and 2 months Charlie received a series of 12 Mehta casts all under general anesthesia. We would fly back and forth across the Atlantic every 8 weeks so that Charlie could have a new cast applied.
Throughout his treatment he had regular X-rays to check how his spine was responding to the casts.
In June 2018 we received the news that we had hoped and prayed for, that Charlie’s curve was down to 9 degrees standing out of cast with a fully relaxed spine. We were just bursting with joy.
Charlie then graduated to a full time brace which he would wear for 23 hours a day until he would outgrow the brace. Over the next 2 years and 4 months Charlie a total of 3 full time braces. And in October 2020 it was agreed that Charlie could move to night time only bracing because his spine was holding at 8 degrees.
For the next 9 months Charlie enjoy his new found freedom during the day, and continued with bracing at night. He then began to outgrow his brace, and we decided to X-ray him in Dublin Ireland and send the results across to Charlie’s Doctor at Shriner’s.
To our amazement Charlie’s spine was completely straight! There was no measurable curve! This was the day we had hoped and prayed for since our journey with Charlie began. Charlie was finally cast and brace free for the first time in over 5 years.
Its been 13 months since Charlie was last in brace, and he is still monitored by X-ray every 6 months or so. At his last check he was still holding steady.
We will be forever grateful to Dr Min Mehta for developing this gentle non invasive treatment to help guide our little warriors to grow straight.
#FridayFeelings
Download a printable pdf of this guide HERE
WASHINGTON — The Internal Revenue Service today reminded taxpayers of a special new provision that will allow more people to easily deduct up to $300 in donations to qualifying charities this year.
Following special tax law changes made earlier this year, cash donations of up to $300 made before December 31, 2020, are now deductible when people file their taxes in 2021.
“Our nation’s charities are struggling to help those suffering from COVID-19, and many deserving organizations can use all the help they can get,” said IRS Commissioner Chuck Rettig. “The IRS reminds people there’s a new provision that allows for up to $300 in cash donations to qualifying organizations to be deducted from income. We encourage people to explore this option to help deserving tax-exempt organizations – and the people and causes they serve.”
The Coronavirus Aid, Relief and Economic Security (CARES) Act, enacted last spring, includes several temporary tax changes helping charities, including the special $300 deduction designed especially for people who choose to take the standard deduction, rather than itemizing their deductions.
Nearly nine in 10 taxpayers now take the standard deduction and could potentially qualify for this new tax deduction. In tax-year 2018, the most recent year for which complete figures are available, more than 134 million taxpayers claimed the standard deduction, just over 87% of all filers.
Under this new change, individual taxpayers can claim an “above-the-line” deduction of up to $300 for cash donations made to charity during 2020. This means the deduction lowers both adjusted gross income and taxable income – translating into tax savings for those making donations to qualifying tax-exempt organizations.
Before making a donation, the IRS reminds people they can check the special Tax Exempt Organization Search (TEOS) tool on IRS.gov to make sure the organization is eligible for tax-deductible donations.
Cash donations include those made by check, credit card or debit card. They don’t include securities, household items or other property. Though cash contributions to most charitable organizations qualify, some do not. Check Publication 526, Charitable Contributions, and the TEOS for more information.
Though cash contributions to most charitable organizations qualify, those made to supporting organizations and donor-advised funds do not.
The IRS reminds everyone giving to charity to be sure to keep good records. By law, special recordkeeping rules apply to any taxpayer claiming a charitable contribution deduction. Usually, this includes obtaining a receipt or acknowledgement letter from the charity, before filing a return, and retaining a cancelled check or credit card receipt. For details on these recordkeeping rules, see Publication 526, available on IRS.gov.
In addition, the CARES Act includes other temporary provisions designed to help charities. These include higher charitable contribution limits for corporations, individuals who itemize their deductions and businesses that give food inventory to food banks and other eligible charities. For more information about these and other Coronavirus-related tax relief provisions, visit IRS.gov/coronavirus.
Are you itemizing deductions?
The adjusted gross income (AGI) limit for cash contributions was increased for individual donors. For cash contributions made in 2020, you can now elect to deduct up to 100 percent of your AGI (increased from 60 percent).
Interested in corporate giving?
What about Corporate Donors?
The AGI limit for cash contributions was also increased for corporate donors. Corporations can now deduct up to 25 percent of taxable income (increased from 10 percent).
Please consult your tax advisor for complete details.
[Source: https://www.irs.gov/newsroom]
Covid-19 Update
Our Amazing Creative Options Health Team!
Covid-19 update to our community
August 24, 2020
Dear ACCO Friends,
We wanted to take this opportunity to share with our community the impact the Covid-19 pandemic is having on our programs and what steps we are taking to mitigate risks as we work toward reopening, while following the State health department guidelines. Given that ACCO serves people of every age from pre-natal moms to school-age children to youth seeking employment and older families sharing guardianship concerns about their loved ones, our organization is steadfast in believing that education, in all its forms, is the catalyst for overcoming all types of barriers. The updates below focus on our three primary areas of service:
EDUCATION
Our Creative Options program for children birth to five opened in June for a 4-week summer session focused on our children going to Kindergarten and our children receiving special education services. The session went well, and we feel assured that the children that could attend did demonstrate continued growth in all domains and expressed joy at being in school! Families also reported that this time for their children was important for them as well allowing them to stay employed while their children continued to learn. The health and safety of our teams, families and children we serve has and continues to be our top priority.
On July 20, we reopened our centers for our birth to 3-year-olds and, as of August 3rd, have also opened our preschool classrooms. Right now, we are offering a hybrid of services, providing both in-class and remote learning, depending on what families choose. For in-class learning, we have implemented several measures including:
• Following all CDC and Colorado Department of Health Guidelines.
• Augmenting staffing schedules in order to accommodate staff that also have children at home
needing care.
• We continue to provide ongoing assistance to families experiencing food, housing and
employment insecurity.
• On-site nursing provides immediate access to answer health questions and determine illnesses
when they occur.
EMPLOYMENT
Since March, the employment team at Ability Connection Colorado has been providing virtual services in a variety of ways:
• Though participation in the Ready to Achieve Mentoring Program (RAMP) has been understandingly interrupted, ACCO staff continues to offer online virtual services to more than 50 youth.
• While mentoring participation has declined somewhat, guest speakers have been easier to arrange with less need for in-person meetings.
• With an uptick in food security and mental health issues, the RAMP team has been identifying and working with several families to provide needed resources. Staff also have noted a significant disparity between youth with disabilities and online learning. For these youth, we have helped provide or helped find and direct resources and equipment to help overcome these deficits.
• The Out of School Youth team is currently serving about 55 youth. Online Zoom sessions have been key to providing numerous classes on subjects including Financial Literacy, Mental Health Support, Workplace Etiquette and Navigating the OSY Application. Staff have also been helping youth with specific tasks such as applying for a Colorado I.D., obtaining a Social Security Card or assisting youth as they apply for Medicaid.
• Information is consistently shared among participants through newsletters and individual contact by phone.
• At a time when job placements and availability are down, employment staff continue to support participants individually with tasks like preparing job resumes and how to navigate new work environments considering the Covid-19 pandemic.
FAMILY SUPPORT
Ability Connection Colorado’s statewide support programs have been particularly busy at this time helping families stay safe and connected, while offering much needed information and resources:
• EMPOWER Colorado, with its focus on helping families cope with mental health issues, has seen a steady increase in calls regarding the uncertainty of the times we live in and the growing need for support and available resources. Beginning in the second quarter of this year, EMPOWER Colorado joined forces with Parent to Parent to broaden their collective resources and to provide additional levels of support for families in need.
• Faith in Action continues to do what it does best. Namely, to match the needs of vulnerable people with volunteers wanting to help others with their daily living skills and activities. More than ever, this service provides critical companionship and assistance at a time of isolation for many.
• Calls for information and support regarding ACCO’s Guardianship Alliance of Colorado (GAC) program have seen a steady rise during the pandemic. Aging parents are sharing their concerns and anxiety about their own health and what they can do for their loved ones should they become affected by Covid-19. The recruitment and training of guardians continues to be a major focus for GAC at this time.
• The Infantile Scoliosis Outreach Program (ISOP) continues to help support families of children born with Progressive Infantile Scoliosis. Whether it’s helping families navigate the medical system or providing them with critical information and referrals regarding the life-saving techniques used in Mehta Casting, ISOP continues to be vital resource for many.
• Parent to Parent of Colorado (P2P-CO) has quickly made the transition from face-to-face meetings to online zoom gatherings where parents can share their stories and concerns, while receiving the latest information about the pandemic and guidelines for staying safe. P2P has been especially well positioned to help families at this time given their well-established web presence, their long-standing relationship with Colorado families and their growing network of information and resources.
In addition to programmatical changes, one of our greatest challenges has been the need to modify, cancel or postpone several of our special events. These critical sources of revenue are what allow us to provide the many comprehensive, life changing programs described above. While we are doing all we can to keep the lights on, it is a struggle to do so. If you can help us during these difficult times, we would be forever grateful. Whether helping spread the word about our need, volunteering or monetarily giving directly to our organization, please know that your contributions are and will make an important difference for someone in need. We recognize the challenges many are facing at this time and appreciate your consideration.
Lastly, if you are in need of support or know someone who is, please don’t hesitate to reach out to us at info@abilityconnectioncolorado.org. We are here to help if we can.
Stay Safe and Connected,
Kathy Higgins
Chair of the Board
Judith Ham
President & CEO
Thanks to everyone who came out to our 26th year, 9-Ball Billiards event this past Saturday at The Wynkoop Brewery!! A challenge dedicated to Kyle E. Fisher. We had a blast! Thanks to the Fisher family, Denver Firefighters Local 858, Colorado Professional Fire Fighters all of our sponsors, volunteers and the ACCO team for making this a huge success. See more photos from the event : https://www.abilityconnectioncolorado.org/special-events/billiards-challenge/
The drawing was for the All-New 2019 Porsche Macan S or $50,000 Cash. See https://abilityconnectioncolorado.tapkat.org/wina2019porschemacans to find out more. Next drawing coming this January!
On December 7th, ACCO hosted a SUIT UP event from 10:00-2:00pm. We received a generous donation of masculine clothing such suits, shirts, and ties from Men’s Warehouse thanks to TKC Inc. We invited families and youth to join our RAMP team at ACCO to pick out a free professional outfit. This was an exciting opportunity to support our clients in the community we serve.
Judy Ham, President and CEO of Ability Connection Colorado in an interview with Scott Cowperthwaite of TV8 Summit, Outside TV, and Summit CH 16 about Wine in the Pines!
Read Ability Connection Colorado’s Annual Report to the Community for FY 2018! We are very excited about the accomplishments of our organization this past year. Find more information, including:
Annual reports for Ability Connection Colorado and ACCO’s HeadStart / Early HeadStart programs:
Ability Connection Colorado held its Annual Meeting for fiscal year 2018 on Friday, April 5, 2019. The well-attended meeting featured a number of speakers who shared outcomes and highlights from all of our programs as well as a review of our special events held during FY 2018. The meeting was capped off with the presentation of Ability Connection Colorado’s annual awards which recognized the outstanding contributions of key staff and community partners in a number of different categories. Special thanks to all who participated in the annual meeting and to all of our deserving award winners! Pictures from the event and a listing of award winners are summarized below.
2018 Outstanding Corporate Sponsor of the Year
The Frohlick Family
2018 Outstanding Volunteer of the Year
The Romero Family
2018 Outstanding Perseverance & Determination Award
Heather Hyatt Montoya
2018 Outstanding Special Educator of the Year
Sara Randolph
2018 Outstanding Teacher of the Year
Maria Cardoza Alvarado
2018 Employee of the Year Award
Tracie Hammons
Civic Responsibility for All: Jury Duty
When our son Aaron turned 18, he started getting pink government envelopes in the mail, and I was not thrilled.
Jury Duty summons…
In principal I support our constitutional right to a jury trial by our peers. However, I thought Aaron would not be able to serve and he would be excused.
The first time he was summoned I went through all the paperwork to get him excused (it required a couple of doctors’ notes and a description from me as to why we felt he could not serve) – it was a pain! Over the years, Aaron has received several other summons and his number has not been called; one time his number was called and we showed up at the court house but were dismissed by noon.
This fall, he got summoned again and yes, his number was required to show up. We dutifully made arrangements to appear.
Aaron didn’t remember our past experience two years ago, but I told him, “don’t worry, they won’t seat you.” Of course I had to keep explaining words, like why it is called a summons or a call, what does it mean to ‘seat’ you, etc.
We had my husband drive us so we didn’t have to deal with parking in Denver County. I accompanied him to sign in and told the clerk that he had a cognitive disability, I was his assistant and asked if they would like us to leave?
Nope. We went into the big waiting room and watched the video with the rest of the potential jurors. And then you wait.
Aaron was a bit anxious and I kept assuring him most likely we would just sit enjoying our coffee and in an hour or so they would dismiss us so we could go have lunch. If his number was called the plan was to tell the court clerk that he has a cognitive disability and surely they would dismiss him. A half hour later sure enough his number was called and I prompted him to raise his hand and say ‘Here’ like the other people whose numbers had been called.
We went out into the hallway with the rest of the potential jurors and listened to the court clerk explain what would happen next: go upstairs to courtroom number D, line up, remove our hats, be quiet & respectful, and sit in the order in which we were placed.
As we waited for our turn in the elevator I explained to the clerk that Aaron had a cognitive, as well as, a physical disability, I had guardianship and was his assistant for the day. I said he was willing to serve but would need my help and she said she would notify the judge. I figured we would never even make it into the court room.
Imagine my surprise when we were all up there and they lined him up, with me behind Aaron!
The clerk informed me that I would sit in the chair at the end of the jury box and that Aaron would sit in his wheelchair right next to me! (By the way, the jury box is NOT wheelchair accessible).
He was pretty nervous but was taking his potential responsibility very seriously. I tried to explain to him that we would still probably be excused but I would assist him with whatever was necessary. He said it felt like he was going to jail. I can understand that, but did my best to keep him calm. We were seated and the judge gave explanations, introduced the lawyers and defendant then explained different reasons people might not feel they could in good conscience serve.
When asked if we had been involved in a similar situation to the charges involved (this was a criminal trial, not a civil one) one person answered yes and was dismissed. Then a woman went up to the bench white noise began so we could not hear what was being said as lawyers from both sides discussed with her and the judge. Then she was excused and left. Next a man who works in the jail as a deputy was excused. They asked if anyone had ever testified in a trial, criminal or civil proceeding so I leaned over to Aaron and told him he needed to raise his hand to tell that he had spoken at his guardianship hearing. The judge asked him if his guardian was there with him and he said yes, his mom and pointed to me. So she asked my name, confirmed that I had guardianship and asked me to come forward with the counsels.
I was very impressed at how respectful they all were. They asked me if Aaron could understand what was being presented and listen to the witnesses. I said that if I were to translate into very simple terms that yes, he would be able to get the gist of what was going on, but that it would take time and I would have to be able to speak with him as the trial was progressing. They asked if I could be fair and non-prejudiced as I did that. I said yes, I thought that I could. He votes every year and I take the time to read through the blue book with him, giving plain English, simple translations of the various candidates and issues being voted on. The fact that he doesn’t always vote the same way as I do I think is testimony to my being fair and unbiased in those explanation.
The defense attorney asked if he could participate in jury deliberations without my participation. I said I didn’t think he would be able to grasp the possible discussions that would take place and if there was a particularly strong minded juror he could either be persuaded or bullied or he could dig his heals in and be oppositional. But that if we explained to him the significance of the deliberation process he would try his hardest to understand and come to a conclusion based upon what he heard.
I did say I thought the time needed for him to process information and his cognitive disabilities would make it a very difficult situation. Because he couldn’t do the private jury deliberations without my assistance both the defense and the prosecutor felt that was sufficient cause to excuse him. The judge agreed and everyone thanked our son and myself for being responsible and offering our service.
It was really quite an amazing experience. I was glad that two others had been excused before him so Aaron didn’t feel like he was being singled out for his disability. Ultimately he was very glad not to have to serve and we went off to a lovely lunch and I walked away marveling at how far we have come as a society that he would get
that far into the process before being dismissed.
Never miss a chance to let our sons and daughters rise to the occasion! We talked at length about our rights, our responsibilities, and our privileges as citizens and our chances to serve. I was so delighted that Aaron and I had this experience in civic responsibility!
Want to know what it is like to serve on a jury? Watch this video! https://www.youtube.com/watch?v=zNqt5NStkTY
How would you support your son or daughter if they are called to Jury Duty? Share your ideas with us by emailing: Parents@P2P-CO.groups.io
All services at Parent to Parent are provided free to families. However, we rely on donations of generous supporters like you to keep our programs going strong! Donate today at coloradogives.org/P2PCO
Thankful for the Quiet Moments
On the first day of November I always start to think about what I am thankful for – social media (Facebook, Instagram, Pinterest) is a good reminder for this as many people post daily thankful posts throughout the month. This is the first year in many that I have not been doing daily posts. As I read what my friends and family are thankful for I am struggling with a myriad of emotions.
You see, 18 months ago I struggled to say “you better call my parents” as I was being rushed away for emergency surgery bleeding to death. I woke up intubated and in restraints somehow managing to communicate that I needed a way to ask if my baby was alive. I had no idea what had happened — just that the day before I had given birth to a darling baby boy.
The days and months after as my body healed, my spirit struggled to keep up. I experienced such severe post-traumatic stress and post-partum anxiety that I could no longer live life as I had.
Life up to this point hadn’t been easy, we had a 9-year old on the autism spectrum and I had been a single mom for many years, but I was able to hold it together juggling all the balls of life. I knew how to put on my favorite red lipstick and smile as I forged through.
Now, though, I no longer had the energy for lipstick or even a shower. I could not manage to go to work as I could not manage to even wash laundry. I struggled to take care of my family or myself. I felt like we lost everything – my uterus, my job, our dream home, my sense of self.
My husband and I have spent a long time putting pieces back together, pieces that no longer fit perfectly because their edges have been frayed.
In the quiet moments (far and few between with a 9 year old and a toddler) I sit and think about how far each member of my family has come since this day that turned our lives upside down and I am thankful that we had this experience.
Pain and tragedy breaks you to pieces, but what can come from that is so beautiful.
I used to make cute little Facebook posts about being thankful for our warm beds, my wonderful job, and such. Those things no longer seem as important (though I am still incredibly grateful to have them). Now I am grateful that my children, husband and I take one more breathe, that we have one more moment together.
As we sit at our tables this Thanksgiving Day, that table may not look the way we want it to be – we may be facing extreme loss, we may be exhausted, we may just not be the best cooks. No matter what it looks like as you tackle life while being the parent of a child with a disability know this…chances are you have way more to be thankful for than what other people share.
What I have learned the past year and a half is this: Be thankful for the simple moments in life – those moments when you take a breath, when your little one (or big one) smiles at you or grasps your hand… be thankful for those quiet moments that melt your heart.
In the Spirit of THANKS and GIVING…All of us at Parent to Parent are thankful to YOU for supporting our work with over 4000 families across Colorado. With your help, last year we provided support and resources to 19,000 individuals. In this season of gratitude, please consider a donation to keep our work going strong. It’s fast and easy to give at: coloradogives.org/P2PCO
What are YOU Thankful for? Share your thoughts and ideas with us in our Online Parent Support Group by emailing: Parents@P2P-CO.groups.io
Not a P2P Member? It’s free and easy to JOIN US!
It’s Time to Vote!
Many people associate the changing of seasons, sweaters, pumpkin spice everything and football season with the fall – but sometimes we forget about the connection to civic responsibility. November is quickly approaching and so is Election Day, a day when we can all participate in the right and privilege of voting!
Eligible voters with disabilities and their family members make up an estimated 25% of the electorate across our country! As family members of people with disabilities we need to be motivated to take action on disability issues, and do what we can to support our adult children to know the issues and express their opinions by voting. Our voting rate during mid-term elections is significantly lower than during a presidential election year—which means that the 40% of people who DO vote are making decisions for all of us! What would it look like if each and every person impacted by a disability voted this year?
In Colorado, everyone has the right to vote and a variety of accommodations are available to ensure that this happens. At first glance, a ballot can look overwhelming but there are resources available that can help you and your family members work through it! The Colorado Cross Disability Coalition has a voter guide developed for people with disabilities and their families with an explanation of the major offices and issues. Rev Up publishes an issues guide that helps voters, advocates, and candidates be better informed about issues that matter to people with disabilities.
One of our P2P Moms shared what voting looks like in her family with two adult children with disabilities. “We get together for a family dinner and afterwards everyone has their ballots. We read through a voter guide and talk about the candidates and issues and answer any questions. Then everyone votes their ballot as they see best – we don’t all agree on how to vote because we have a variety of viewpoints in our family. But we all do agree on the importance of supporting each other to vote!”
Need some additional motivation? Check out these videos for information on why mid-term elections are so influential and some motivation for young people to vote!
Let’s prove that we are paying attention, let’s prove that we care about issues that impact people with disabilities! Let’s shake things up, by speaking out with our vote! The results could be historic if all 25% of us expressed our opinions and preferences this November!
The Rev Up Campaign aims to increase the political participation of the disability community while also engaging candidates and the media on disability issues. REV Up stands for Register! Educate! Vote! Use Your Power!
For additional resources about voting:
Don’t Miss the Latest Ability Connection Colorado Fall NewsletterGet caught up on all of the latest news and information from Ability Connection Colorado including:
• Program updates for Education, Employment and Support
• Wine in the Pines Special Event news
• The latest happenings at ACCO
• Colorado Gives Day
Download or view the PDF by clicking HERE.
Read Ability Connection Colorado’s Annual Report to the Community for FY 2017! We are very excited about the accomplishments of our organization this past year. Find more information, including:
Read the full report here: FY 2017 ACCO Annaul Report_web.pdf
Additional annual reports for ACCO’s HeadStart / Early HeadStart programs:
FY17HS-EHS_AnnualReport.pdf
FY17HS-EHS_AnnualReportSpanishVersion.pdf
Editor’s Introduction: We’ve all heard the phrase, “Failing to plan is planning to fail”. Variations of this quote have been attributed to Benjamin Franklin, Winston Churchill and Alan Lakein, as well as others. With the New Year upon us, we often start to think of planning, setting goals and accomplishing new things. To start off our Parenting with Altitude blogs this year, we’ve asked several parents and professionals to tell us about their planning efforts in respect to financial planning and resources for their family. We’ll be publishing this series of blogs over the next several weeks with the hope that you’ll find some ideas and inspiration for planning for your family, specifically for your son or daughter with a disability or special health care need. For many working families, the Earned Income Tax Credit is a benefit that goes unclaimed. Read more about how the EITC might fit into your financial planning.
What’s Your Plan? Part 5: It’s Tax Filing Season!
The Earned Income Tax Credit (EITC) is a federal tax credit that has been around for more than 40 years and was created to benefit workers with modest incomes. For example, a married couple with 3 children making $53,000 per year may qualify for the EITC. A single parent with 2 children making $45,000 may also qualify. The EITC survived the recent tax reform bill and continues to receive bipartisan support. This refundable tax credit for working families is worth up to about $6,300; the state of Colorado offers a 10 percent match of the federal EITC as well.
You may be eligible to claim the EITC! Many people who have children with disabilities qualify for the EITC. Generally, you may claim a relative of any age as a qualifying child if the relative is totally and permanently disabled and fits all the other EITC requirements. In addition, families may also be able to claim other child or dependent care expenses credits when caring for a family member with a disability. We always recommend consulting your tax professional or the IRS website If you have additional questions about your eligibility, you can call the Internal Revenue Service toll free number—1-800-829-1040.
Why haven’t I heard about the EITC before? Many people may be missing out on claiming this valuable credit because they just don’t know about it. In Colorado, one in four eligible families doesn’t claim the EITC. The criteria for claiming the EITC is somewhat complicated and many other people who could benefit from it may be missing out because they make below the threshold for filing taxes. But, you won’t know if you qualify, if you don’t file.
What’s the benefit? The biggest benefit of the EITC is that even if a taxpayer doesn’t owe any tax, it gives money back. It is one of the most valuable credits in the tax code, helping families receive thousands of dollars each year to bridge the gap between their income and expenses. Most families use their refund to cover unexpected expenses like medical bills, transportation or increased housing costs. Families who have sons and daughters with special needs may use the refund for equipment, therapy, or other expenses.
To estimate how much you can receive visit—http://www.piton.org/eitc or use the EITC calculator.
Where can I find tax help? Tax Help Colorado operates 29 free tax sites throughout Colorado where you can ask questions about tax credits available to you and have your taxes prepared by an IRS-certified preparer. To qualify for free tax help, you must make $54,000 or less a year. To locate a free tax site near you, call 2-1-1 or visit TaxHelpCO.org for a statewide list of all places providing free tax preparation. Check out this flier to learn more about free tax help, what to bring to a tax site, and how to access free online filing.
How are you planning for your son or daughter? You can share your ideas with us at: p2p-co@yahoogroups.com Be sure to visit The Resource Storeroom for more information on Financial Resources and Planning. Two other helpful resources include: The Arc Future Planning and Wright’s Law Future Planning We also love the resources at Lifecoursetools – these are great visual planning resources to use with your son or daughter to create “a good life” with financial planning included.
Editor’s Introduction: We’ve all heard the phrase, “Failing to plan is planning to fail”. Variations of this quote have been attributed to Benjamin Franklin, Winston Churchill and Alan Lakein, as well as others. With the New Year upon us, we often start to think of planning, setting goals and accomplishing new things. To start off our Parenting with Altitude blogs this year, we’ve asked several parents to tell us about their planning efforts in respect to financial planning and resources for their family. We’ll be publishing this series of blogs over the next several weeks with the hope that you’ll find some ideas and inspiration for planning for your family, specifically for your son or daughter with a disability or special health care need. Because working maybe an important part of your financial planning, today we offer a post on working from home!
Working from Home: Will It Work for YOU?
Working from home has become the latest trend and we are talking globally here. Every day, more and more companies are allowing their employees to work from home at least once or twice a week. And even more companies are looking to outsource, looking for employees who can work from home and, sometimes, from a different country. We can see these “work from home” job offers increasing every single day on the different job boards and people are really starting to get into this new groove because, let’s face it, staying at home has to be better than going to the office every day. However, this is not true for everyone. Working from home has its pros and cons, but, in the end, it depends on each person.
Let’s begin listing some of the pros: no commuting, that alone should convince you to stay home, no traffic, no public transportation, no people on top of you during rush hour, just bliss while you walk from your room to the office space; flexibility of hours and in managing that time, most of these jobs do not necessarily have a rigid schedule you need to follow, so you are able to manage your own time, especially if you are a freelancer; less stress, since most people working from home are their own bosses, or their bosses are nowhere near them, stress can be reduced to a minimum; less distractions hence more productivity, no useless meetings, no coworkers telling you about their 13 cats or children, no running around the whole office looking for a photocopier that actually works, no wasting time with small talk, just you and your family; more family time, since you are already at home, there is a really good chance you can spend more time with your family, or your dogs, while working from home, you just need to be organized and know how to manage your time in a productive way.
Even though you are now probably ready to pack up your desk and go home, you need to know that working from home also has its disadvantages: isolation, even though some people prefer being alone, others would rather have some company during the day, but if you have a family, this is not really a problem; distractions, we might have more distractions in an office, but that does not mean there are not any at home, browsing social media becomes your biggest enemy while working from home; separating work from home, this is probably one of the worst disadvantages of working from home, you need to be able to organize your day in a way you get to spend enough time working and enough time with your family or friends, try to have a separate space for working, do not stay in your bedroom, find a good nook in the house to do so; working endlessly, since you have no one controlling your hours but yourself, you might feel the need to work at all times, that is why you need to be very organized with your time and prioritizing your responsibilities.
If you’re a working parent and a parent who has a child with special needs, you experience untold challenges in balancing responsibilities. Studies show that 40 percent of these moms had switched jobs, reduced hours or refused promotions because of their intense parenting responsibilities. Long days in the office = less time at home. That arrangement doesn’t always make sense for a parent, so many of them prefer to look for jobs that keep them closer to home, especially if they have younger children or children with disabilities or special health care needs.
Here are a few tips on how you can manage taking care of your child and working from home:
Time Constraints: You may have daytime hours available or you may only be able to work nights. You need to honestly look at the time you have available and commit to finding work that fits into your busy life.
Chaos: Keep in mind, some of the most readily available work from home jobs are in customer service. Chaos is an everyday occurrence with children, so before looking for work, know that, life in general, may limit your ability to work a number of popular at-home jobs.
Remain Open-Minded: Remain open minded about remote working possibilities. You’re going to have limitations when it comes to working from home as a parent and you may very well land on something that works perfectly into your busy schedule.
It may not be easy to go from the job search to actually managing life as a stay-at-home, work-at-home, mother or father. If you’re determined, you can make this work and gain valuable family time while still earning a living. Now you are ready to consider your options and decide whether you are a good candidate to work from home or not. Welcome to the future!
How are you planning for your son or daughter? You can share your ideas with us at: p2p-co@yahoogroups.com Be sure to visit The Resource Storeroom for more information on Financial Resources and Planning. Two other helpful resources include: The Arc Future Planning and Wright’s Law Future Planning We also love the resources at Lifecoursetools – these are great visual planning resources to use with your son or daughter to create “a good life” with financial planning included. For more ideas on working from home and balancing parenting responsibilities, we like Achieving Balance As A Work At Home Parent
We’re looking for a new Team Member at Parent to Parent of Colorado to work on a grant funded project! Much of the work can be complete at home! For a full job description or any questions, please email us at infop2p@abilityconnectioncolorado.org
Editor’s Introduction: We’ve all heard the phrase, “Failing to plan is planning to fail”. Variations of this quote have been attributed to Benjamin Franklin, Winston Churchill and Alan Lakein, as well as others. With the New Year upon us, we often start to think of planning, setting goals and accomplishing new things. To start off our Parenting with Altitude blogs this year, we’ve asked several parents to tell us about their planning efforts in respect to financial planning and resources for their family. We’ll be publishing this series of blogs over the next several weeks with the hope that you’ll find some ideas and inspiration for planning for your family, specifically for your son or daughter with a disability or special health care need.
What’s Your Plan? Part 3: Working Together
Like all of us, as parents of a child with special needs, we worry about what will happen to our children when we are gone. My daughter, Izzy, who has significant disabilities will always require care, and will never be able to live independently. This was the main reason why I setup a special needs trust for my daughter. The trust allows for money to be held in an account for the use of my daughter without affecting her ability to receive Supplemental Security Income (SSI). Luckily, both my ex-wife and I were on the same page when it came to preparing for our daughters future.
I chose to work with an attorney/financial advisor who specializes in these kind of trusts. In addition to a special needs trust, I also set up a living trust. An added difficulty was that I was going through a divorce at the time. However, as parents, we were able to work together to come up with a plan to support our daughter’s future. For myself, there was the decision of whether to set up a living trust or a will. A will can be cheaper and easier on you, but the living trust is easier on your heirs. All of my assets will go into the living trust when I die. Those assets will be easier and quicker to access, since they will not have to go through probate. This can be a difference of only a couple of weeks for the living trust as opposed to possibly months for a will.
How much will all this cost? To set up two living trusts, one for me and one for Izzy’s mom, and a special needs trust for Izzy, the grand total was $3800. There were three meetings with the attorney.
To prepare for the second meeting, there are certain things you should consider:
Funding can come from many sources. You can fund a trust at any time, but for Izzy’s mom and I, we have decided to wait to fund it. When we both pass, the assets of our living trusts will go into the special needs trust. Those assets will include personal property, retirement accounts and most importantly insurance policies. Relatives can also contribute, but we have told them not to list Izzy, individually, but instead us or her special needs trust. To make things simple, we were given a sheet of paper with how to designate beneficiaries. Depending on the type of asset, you may want the beneficiary to be your living trust or a particular person.
Once the special needs trust is funded, what do you do with it? The money can be used for anything that Izzy needs outside of what must be paid for with SSI. One of my main concerns has always been if she needs to be put into a care facility, I want there to be options for her. This trust will provide that. We have also stipulated that whoever is taking care of her, can take a monthly stipend. We have set a predefined amount for this stipend.
Finally, what happens when Izzy passes? Whatever money is left in the special needs trust can be designated however the parents wish. For us, the money will go to whomever was taking care of Izzy at her passing. However, trust law continues to change and in some cases there may be a requirement to pay back Medicaid. This is where working with an attorney who is knowledgeable about special needs trusts is important.
Trusts are fluid documents, everything is not set in stone. I can make changes as situations change. Some of those changes will, however, mean meeting with a lawyer.
I do feel much safer now that we have a plan in place and Izzy will be taken care of when I am gone. Working together with Izzy’s mother and the attorney, it was a painless process and well worth the money.
How are you planning for your son or daughter? You can share your ideas with us at: p2p-co@yahoogroups.com For more information on special needs trusts, read What’s Your Plan? Part 2: Options for Planning. Be sure to visit The Resource Storeroom for more information on Financial Resources and Planning. Two other helpful resources include: The Arc Future Planning and Wright’s Law Future Planning We also love the resources at Lifecoursetools – these are great visual planning resources to use with your son or daughter to create “a good life” with financial planning included.
Are you an individual, business or organization that would like to partner with P2P-CO?
Learn more about our Friends of P2P-CO Program!
Editor’s Introduction: We’ve all heard the phrase, “Failing to plan is planning to fail”. Variations of this quote have been attributed to Benjamin Franklin, Winston Churchill and Alan Lakein, as well as others. With the New Year upon us, we often start to think of planning, setting goals and accomplishing new things. To start off our Parenting with Altitude blogs this year, we’ve asked several parents to tell us about their planning efforts in respect to financial planning and resources for their family. We’ll be publishing this series of blogs over the next several weeks with the hope that you’ll find some ideas and inspiration for planning for your family, specifically for your son or daughter with a disability or special health care need.
What’s Your Plan? Part 2: Options for Planning
Supporting a person with special needs can be a 24/7 job, and many caregivers lay awake at night worrying about what will happen to their son with Down syndrome or sister with Cerebral Palsy if they become unable to provide that support. Discussing your own vulnerability or mortality is never an enjoyable subject, but it is a necessary conversation for all families to have to ensure loved ones are protected and provided for in the future. This is never more crucial than with respect to a family member with special needs. Estate planning for families with special needs, also known as special needs planning, determines in advance how your loved one will be cared for without you (in addition to more typical issues such as the distribution of property).
Public benefit programs like Medicaid are often a lifeline for an individual with special needs, and a key factor determining whether that person can live a decent, fulfilling, and productive life. Thus, one of the most important aspects of special needs planning is maintaining public benefits eligibility. This is typically accomplished with a Special Needs Trust (SNT). A SNT is a legal document created for an individual with special needs in which a Trustee manages assets for the individual to ensure he or she can remain eligible for public benefits.
If you provide financially for your loved one with special needs or plan to leave a financial gift for him or her after your death, a SNT is an essential piece of your estate plan. The assets in a SNT do not count against the Medicaid/SSI resource cap because the individual with special needs does not have direct access to them. Only the SNT Trustee can access the assets, and he or she alone decides when to make distributions from the SNT. This allows assets to be set aside for supplemental expenses not covered by public benefit programs, such as education expenses, vacations, hobbies, or certain medical expenses.
There are several different types of SNTs. An individual first-party SNT, also called a self-settled SNT, is used when the individual with special needs has received or will receive substantial assets that would ordinarily disqualify him or her from public benefit programs, such as a person injury settlement. An individual third-party SNT is used when a third party wishes to provide for an individual with special needs, such as an inheritance from a family member. Finally, there are pooled trusts, in which a nonprofit organization sets up and administers a master SNT for multiple individuals with special needs, combining their assets and investing them together.
In some circumstances, families should also consider drafting a Letter of Intent spelling out the family’s wishes for the SNT funds. A Letter of Intent can also outline the individual’s functional abilities, routines, activities, and medical information. This document is essential if the individual with special needs cannot advocate for him or herself.
Every situation is different. A one-size-fits-all approach does not work for families with special needs, and therefore meeting with an estate planning attorney who understands special needs planning is an important first step in securing your family’s future. Probate Power, the Colorado Cross-Disability Coalition’s new estate planning legal program, focuses almost exclusively on special needs planning and can help address your family’s questions and concerns.
How are you planning for your son or daughter? You can share your ideas with us at: p2p-co@yahoogroups.com
Be sure to visit The Resource Storeroom for more information on Financial Resources and Planning. Two other helpful resources include: The Arc Future Planning and Wright’s Law Future Planning We also love the resources at Lifecoursetools – these are great visual planning resources to use with your son or daughter to create “a good life” with financial planning included.
Are you an individual, business or organization that would like to partner with P2P-CO? Learn more about our Friends of P2P-CO Program!
Editor’s Introduction: We’ve all heard the phrase, “Failing to plan is planning to fail”. Variations of this quote have been attributed to Benjamin Franklin, Winston Churchill and Alan Lakein, as well as others. With the 2018 upon us, we often start to think of planning, setting goals and accomplishing new things. To start off our Parenting with Altitude blogs this year, we’ve asked several parents to tell us about their planning efforts in respect to financial planning and resources for their family. We’ll be publishing this series of blogs over the next several weeks with the hope that you’ll find some ideas and inspiration for planning for your family, specifically for your son or daughter with a disability or special health care need.
What’s Your Plan? Part 1: Getting Started
Planning begins with our values. Values are from our parents, traditions, cultures, education, friends and life experiences. As children, we don’t realize we are learning values, but we are. In addition to my family’s “no whining” policy, my parents demonstrated the value of discipline to achieve goals.
My folks were deceased when my son, Eli, was born, but their values guided me to set and achieve goals for myself as his Mom and the life outcomes I wanted for him. At age 3, Eli was on the path to 36 diagnoses, was spectacularly self-injurious and fitfully slept 4 hours daily. Physicians used the word “terminal”. My goal was to keep him alive while experiencing the most quality life possible.
That goal drove the 1992 Autism treatment and Early Intervention statutes, the CES And CWA Waivers, the HIMAT law, and more than a dozen other statutes and bills I worked on as a single working parent caring for a “worst case scenario” child. I didn’t whine. I set and, as circumstances changed, reset goals and somehow mustered the discipline to work towards achievement. That was the behavior my parents expected of me.
When Eli was 3, an estate planning attorney, Stanton Rosenbaum, also a parent, encouraged me to plan. He asked who would care for Eli if I became incapacitated. My answer was, “no one”, meaning, my goal of keeping Eli alive and experiencing quality of life depended solely on me.
Overwhelmed, constantly exhausted and anxious, I bought insurance (Life, Long-Term Care, Disability). Stanton set up a Supplemental Needs Trust to hold assets and protect Eli’s access to benefits, and suggested I write a Letter of Intent. The Letter of Intent is dually purposed. It is not just instructions for others. It is how we live in the here and now to achieve our desired goals.
At age 3, Eli’s geneticist said, “I don’t think Eli is going to die.” I held onto that “life preserver” as I described my vision for Eli’s future. The Letter of Intent had goals for fulfilling lives for both of us. Eli’s letter influenced his IEP and therapy goals. I asked, “What is needed now to attain independent living skills at 21?” He was only 3, but I recognized it might take 18 years of tiny steps to achieve some independence activities.
I updated Eli’s Letter of Intent when he was 18. I was so surprised when I re-read his age 3 letter and realized we had already achieved many of our future outcomes.
Now that he is an adult, I often update Eli’s Letter of Intent. He, like everyone, changes. It is now more “in my face” that others may need to step up to make decisions in his best interests. The letter describes how best to support Eli and what he expects.
Eli expects people to be promise-keepers, respect him and be nice to him. He has his own work goals and is disciplined towards achievement. He sews for the Autism Community Store and volunteers at the Arthritis Foundation and Talking Books Library. Eli wants to be with patient, compassionate people with realistic expectations.
I have met thousands of parents over nearly 30 years. Every family is unique with their own terrors and triumphs, behaviors and beliefs, visions and values. P2P parents are motivated to do their best for their families. Planning is an opportunity to put our motivations into actions. As Scott Page states in his book, It’s Never Too Late, “we all have an expiration date…we have three choices on how to handle that reality—we can deny it, we can ignore it, or we can plan for it.”
Planning is the process of forethought of what we want to occur, now and in the future. Planning reflects your goals and values.
So, What’s Your Plan? How are you getting started with planning for your son or daughter? You can share your ideas with us by emailing: p2p-co@yahoogroups.com
Be sure to visit The Resource Storeroom for more information on Financial Resources and Planning. Two other helpful resources include: The Arc Future Planning and Wright’s Law Future Planning We also love the resources at Lifecoursetools – these are great visual planning resources to use with your son or daughter to create “a good life” with financial planning included.
‘Tis the Season…For Taking Care of Ourselves!
Whether it’s religious, cultural, or community, December is the month of gatherings and celebrations. Although it is a joyful time, our stress levels can go soaring! Lately, I’ve been contemplating: Why is it so hard for us to take care of ourselves when we are so good at taking care of others?
We know that caregivers need to find some balance but where in the midst of all the season’s busyness do we take care of ourselves? I certainly don’t claim to have all the answers, but I will share with you a tip that my husband and I both use. We are both caregivers for our multiple kids with disabilities, have busy jobs outside that, and other commitments. We have to be pretty intentional to take time for self-care. Our solution?
Take A Mini-Vacation!
What do I mean by that? Well, I mean be intentional about self-time, whether that’s 10 minutes, 30 minutes, 2 hours or more. When you are intentional about those precious minutes or hours, you tell yourself, ‘I’m on vacation’.
That means for this period of time, you will be NOT checking your email, NOT available for homework questions, NOT taking a call/text/message from your boss, your spouse, your teenager or your mother! (Exception: A family member is having an emergency. For us an emergency is defined as life or limb – lots of blood spewing, a bone poking out, or someone turning blue—in other words, if you need an ambulance, ok. Otherwise, no, I’m not available right now)
This requires some discipline. Don’t feel bad if it takes a while to re-educate those in your circle to what you being temporarily unavailable means. Stick with it and you’ll feel less and less guilty, and they will start to get it.
So, what can you do on your mini-vacation? Truly it is up to you and your imagination, but here are some things that I’ve done:
Got 10 Minutes?
Got 30 minutes?
Got 2 hours? This one is like pure luxury! How often do we get 2 hours? Not very often. But be intentional when you do.
Whatever gives you joy, rest, and energy, try to be intentional about some time to do that during this busy season. Try to find at least 10 minutes a day for yourself, 30 minutes a week just for you, and if you can swing it, sometime over these next few weeks grab those 120 minutes and savor some time to take care of yourself. We know that taking care of ourselves helps us to be better caretakers for others and gives us the strength to last through this journey of parenting our sons and daughters.
Another great way to take care of yourself? Stay connected to other parents who understand! It’s free and easy to join Parent to Parent of Colorado! Our community of 4000 parents across Colorado supports each other on the journey of parenting our sons and daughters with disabilities and special health care needs.
You’ll get access to our Online Parent Support Group, connected to a trained Support Parent for one-on-one support (upon request) and you’ll find hundreds of resources on our P2P-CO website!
Editor’s Note: As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us! The efforts of Parent to Parent of Colorado are sustained by your involvement and donations from our community.
Please help us Celebrate 20 years of supporting parents by making your contribution to https://www.coloradogives.org/P2PCO
A Season of Gratitude and Thankfulness: Small Town Charm
Living in a town with a population of less than 2,000 people has its challenges. Sometimes I’d give anything for pizza delivery, and I get frustrated that the nearest Kohl’s is three hours away. There are days when I wish I could just go and buy milk without seeing someone I know.
Still, there are benefits to living in a small community. There’s no mail delivery in my hometown, but if I forget the keys to my post office box, the postmaster will happily retrieve my mail for me without even having to ask for my name or box number.
The town I live in has no stop lights, but there is an emergency signal. There’s also a grocery store, three churches, a couple of restaurants and the county fairgrounds. When I moved to this town to take a teaching job 23 years ago I didn’t think I would stay forever, but I met my husband, we started a family, built a house and put down roots here.
Lately I’ve been feeling especially thankful to be raising my kids in a small town, especially my eight year-old son, Lewis, who has Down syndrome and autism spectrum disorder. All it takes is a trip around town to remind me why I am glad we live here.
Lewis loves to go to the grocery store. As soon as we enter Lewis looks for the store owner, Mr. Bill, who always picks him up and hugs him. Then Lewis pushes his kid-size cart through the store as we pick out our groceries. Sometimes when I think he’s following behind me I turn around to find that he’s run off to see one of the employees, who greets him by name. We stop at the deli, where kids get a free cookie, and Mr. Bill comes around to help us out when we are done. He makes sure to put something light in a bag for Lewis so he can help carry the groceries to the car.
In the parking lot, and really anywhere we go in town, it’s common to hear kids’ voices calling out, “It’s Lewis! Hi, Lewis!” We joke that he is a celebrity here.
My kids attend school in the local school district, which has a total student population of less than 500. What it lacks in size it makes up for in small class sizes and dedicated teachers.
Lewis started in the district’s inclusive preschool program shortly after his third birthday, and he has gone to school with his typical peers ever since. There was never any question about it. All kids are included, with para-professional support when needed, because there is no self-contained classroom option. It has brought Lewis a level of acceptance that I never could have imagined.
Last month Lewis rode his adaptive tricycle in the homecoming parade, and in December he’ll be on stage with his classmates for the holiday program. He may not be able to sing many of the words, but he’ll be rocking side-to-side to the rhythm of the music, and everyone will clap for him.
Living in a Small Town has advantages and disadvantages, but it has brought Lewis a level of inclusion and acceptance that I never could have imagined. At least that’s the way it feels to this proud and thankful mom.
Editor’s Note: As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us! The efforts of Parent to Parent of Colorado are sustained by your involvement and donations from our community.
Please help us Celebrate 20 years of supporting parents by making your contribution to https://www.coloradogives.org/P2PCO
All supports provided to families are free, however we rely on generous donors like YOU to keep our program going strong! Donate today at: coloradogives.org/P2PCO
A Season of Gratitude and Thankfulness: Past, Present, Future
Looking back, It is hard to imagine how much has changed in 30 years. 30 Years ago our son was born, 10 weeks early spending over 5 months in the Neonatal Intensive Care Unit. I will never forget that first winter, those first 8 or 9 months when I was essentially trapped at home with a medically fragile, immune suppressed, adorable and very sick little boy and how isolated I felt.
The past…..
1987 Life was still pretty isolating. No parent to parent organizations and it was hard to find support. Eventually my son was healthy enough to have therapy at a rehab center and I attended a group there. No internet, no cell phones, and no social media. Mostly I was stuck at home.
1994 Pagers became affordable. I could have a life! I could go to the grocery store during the day while my medically fragile kids were in school and wasn’t stuck at home waiting by the phone for the calls that came, sometimes daily but at least once a week. I could have a job where I traveled around the region supporting other families with kids with special needs and my own children’s team could reach me! I was a big fan of pagers!
1996 Cell phones were starting to become more affordable for many families and I got one! Still looking for ways that families could connect with one another. Support groups were fine, and I still attended them when I could find them and referred families. But could we do more?
1997 Parents gathered for the Summit at the Summit and Parent to Parent of Colorado (P2P-CO) was formed. The internet was growing and many pieces of the puzzle were starting to come together. People had ideas of how to connect parents to a grassroots, organized group that could build inclusive communities, provide one another with information and emotional support and take constructive group action. Some forward thinking folks started exploring the idea of using personal computers to connect parents.
1998 The very first message was posted to the brand spanking new P2P-CO e-group which became Yahoo Groups listserv and is now our Online Parent Support Group.
1999 Two coordinators were hired as the first paid Parent to Parent staff. Their primary function was creating and supporting groups of parents. At the same time, one of our coordinators started growing this unique new technology for supporting parents. I don’t remember when I posted the first time but I know by August of ’99 I was reading daily and often responding. The P2P-CO group became my lifeline. Being able to connect no matter the time of day or night meant so much to me!
Fast forward to the present…
2017 We are celebrating our 20th Anniversary of Parent to Parent of Colorado. Through technology we are now connected with over 4000 families across Colorado and with a nation-wide network of Parent to Parent organizations. Listservs are very old technology. Facebook and other social media platforms give everyone — not just families with sons and daughters with disabilities — the ability to connect.
My heart is thankful everyday. For my family. For my larger disability family. For the technology that continues to be a tool to help me stay connected. I will never forget that first winter and how isolated I felt. At Parent to Parent, we hear almost daily, how support from another parent helps a new parent cope and feel less alone. Life is so much better now. The connections make a difference!
What will the future hold?
As technology continues to change, one thing remains constant – parents need other parents in this journey of parenting our sons and daughters with disabilities and special health care needs. Together, we continue to ask questions, give and receive advice, and vent when needed. There is nothing like the connection with another parent who has “been there, done that” to support us in our journey!
Editor’s Note: As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us! The efforts of Parent to Parent of Colorado are sustained through the support from our community. Donating on Colorado Gives Day makes us eligible for additional dollars through the Incentive Fund. Please help us Celebrate 20 years of Supporting Parents by making your donation at https://www.coloradogives.org/P2PCO
A Season of Gratitude and Thankfulness: True Gratitude
Our society seems to push gratitude in a context of comparison:
We see others that we judge to be less fortunate than us and use that as an opportunity to feel grateful. What happens though, when your world falls apart and you find fewer and fewer people fall into that “less fortunate” category? How do you still find gratitude in your heart when your world is crumbling? How do we find gratefulness in the absence of health, family, and material possessions?
Perhaps we need a mind shift away from the “I’m so thankful I’m not like that person” to a place of genuine gratitude for the good and the bad and the way those together have formed our life. Wesley’s birth, and subsequent disability, was not my plan. I didn’t end up with the birth I wanted nor with a healthy baby. I could say, “I’m so grateful he survived” which has definite truth to it, but what about the family whose baby didn’t survive? What do they have to be thankful for?
True gratitude that can withstand the most challenging and heartbreaking situations imaginable comes from an acknowledgement that there is a higher purpose in all of this. That the messy threads of our life are being woven together by a masterful Artist who sees the whole picture not our limited perspective. That I can choose gratitude.
So today, even when it doesn’t always feel true, I choose to say:
Because the gratitude in my heart shapes my attitude towards my life. I can’t change my circumstances but I can change my attitude towards them. So today, I choose gratitude.
Editor’s Note: As we move through this journey of parenting our sons and daughters, we are grateful for those parents who have come before us and those who walk beside us! We’ve asked several P2P Members to share their thoughts on thankfulness and gratitude and we’d like to hear yours also! Email our group at Parents@P2P-CO.groups.io
Want to become a P2P-CO Member? It’s free and easy to JOIN US!
Throughout the year we rely on generous donations like YOURS to keep our supports and services free for parents. Please donate today!
A Season of Gratitude and Thankfulness: For You, I am Thankful!
It’s been 4 years since we have embarked on this journey of parenting. Expectations collided with the reality of life from the moment our darling daughter was born. I remember you curling up next to me in disbelief while she was being prepped to be transported to a nearby hospital. As we feared for her life and for our lives without her, I knew we are going to be okay. The warmth of your tears landing on my shoulder and the quiet sounds of you attempting to breath filled my heart with the comfort I needed… together, we will be okay.
We watched our relationship morph into many different ones. There are a lot of times when us as a couple takes the back seat to us as a family raising a child with special needs. My heart has many things to say to you. Today, I want to take the time to thank you…
Your support, commitment and compromise are unconditional. We’ve had to take many difficult and life altering decisions that wouldn’t have been possible otherwise. For that, I am thankful.
You have been the rock I needed in this wild parenting adventure. You make me a better person and a better mom. For that, I am thankful.
You are a perfect mix of centered and affectionate, kind and hilarious… always knowing how to put a smile on my face. For that, I am thankful.
You are the kind of dad I always knew you’d be… patient, loving and fun. Seeing our daughter grow more and more attached to you every day is the greatest gift. For that, I am thankful.
You forever play an active role in our relationship… For you, I am thankful!
Editor’s Note: As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us! We’ve asked several P2P Members to share their thoughts on thankfulness and gratitude and we’d like to hear yours also! Email our group at p2p-co@yahoogroups.org
Want to become a P2P-CO Member? It’s free and easy to JOIN US!
A Season of Gratitude and Thankfulness: Counting my blessings
As mothers of sons and daughters with disabilities and special health care needs, we face daily challenges. In our family’s world those include: repositioning my 90-pound son (many times a day), g-tube feedings (at least 6 times a day), giving about 20 medications throughout the day and night, diaper changes (6 – 8 times a day). In addition there is constant vigilance to insure our son is breathing well through his new tracheostomy. We pack 3 bags to go with us whenever we leave the house. We plan an extra 30 minutes time whenever we go, to account for loading and unloading the wheelchair and all the stuff.
BUT TODAY I would rather focus on my blessings.
Joshua has the most incredible smile and giggle, especially now that he has a new speaking valve for his tracheostomy. Joshua’s smile is so infectious, perfect strangers can’t help but smile back.
We have 4 children who we are watching blossom into caring, productive, serving adults. Ben and Laura are graduating from college this year, and Ben and Andrew are getting married. We are glad to welcome Ashley and Charise to our family.
Daily, Joshua gets to see his grandma and grandpa, who always make him smile.
I have a wonderful job, caring for my son in our home, thanks to the family care giver act. This allows our son to live at home in safety and surrounded by love and family.
I am grateful for the many parents of Parent to Parent of Colorado who have gone before me. They willingly offer advice, encouragement, and wisdom. Many have worked tirelessly on behalf of our children, and have made a difference in our laws and in our individual lives by being there to answer questions and encourage us.
We own a home that is accessible and meets our needs as a family, and we get to live in beautiful, colorful Colorado.
We have been blessed with hundreds of therapists, nurses, teachers, friends, and family who care for, teach, and communicate with our son every day.
Our family has been a part of 4 churches in the last 30 years where we have found good friends, good fellowship, been able to worship meaningfully, grow spiritually, been able to serve others, and have been embraced as a family with a child who has special needs.
I have a wonderful, loving, responsible, faithful, and Godly husband who is exactly the man I need every day.
Some days, it can be hard to see the blessings, because we spend so much of our time wrestling with diaper changes, or spending sleepless nights, or we are just plain worn out.
But every day, it is a good idea to see if we can all take just a few moments to think about all the many things we can count as our blessings; because if we do, I find that it can make the difference between a discouraging day and one where we can give thanks for the many blessings we all have.
Editor’s Note: As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us! We’ve asked several P2P Members to share their thoughts on thankfulness and gratitude and we’d like to hear yours also! Email our group at p2p-co@yahoogroups.org
Are You Connected? It’s free and easy to Join P2P-CO!
The Colfax Marathon offers a Marathon, Half Marathon, Urban 10 Miler, or run/walk 5k.
To register: https://www.simpleracereg2.com/events/2018_colfax_marathon
Early registration ends January 24, 2018.
When you register, you’ll be asked: Do you (or your team) plan to raise funds or awareness for one of our charity partners? Use the drop down menu to select Ability Connection Colorado.
For more information about the Colfax Marathon, visit their website at this link: http://www.runcolfax.org/
A Glimmer of Hope?
Why “Minimum Progress” is No Longer Acceptable for Our Children
It has been 6 months since the United States Supreme Court issued its decision in a special education case, Endrew F. v. Douglas County Public Schools. In that case, the Supreme Court was tasked with deciding whether the student, Endrew F., received a free and appropriate public education (FAPE) as required by the Individuals with Disabilities Education Act (IDEA).
Endrew F. was a student at Douglas County Public Schools in the Denver-metro area. He has autism, and received service through an Individualized Education Program (IEP). An IEP is the plan that the parent and the school put together each year to define the specialized instruction, accommodations and modifications, and related services the child will need in order to get through the school day and learn. All IEPs have goals for the child. For example, Gracie’s goals include things like maneuvering her walker through doorways without having to be reminded about the wheels, and remembering to look around before she starts moving.
Endrew F.’s IEP had very minimalistic goals that he was meeting, but they did not bring him closer to the academic level of the other kids. He was falling more and more behind each year. In his fourth grade year, Endrew developed behavioral problems, which escalated through the year and became severe by the spring. The school and Endrew’s parents disagreed about how to best accommodate Endrew’s needs in the school environment. Eventually, Endrew’s parents withdrew him from the public school in April of the school year and enrolled him in a private school program, where he is now thriving.
This is where it gets interesting. Endrew’s parents billed the school district for the cost of enrolling Endrew in private school, arguing that he was denied a FAPE. The district, of course, did not pay. The parents engaged in the dispute resolution process, where the hearing officer determined that because Endrew was meeting his IEP goals he was receiving “some educational benefit” that was more than de minimus — more than nothing. The parents appealed, and the 10th Circuit upheld the hearing officer’s decision that because Endrew was making some progress, he was receiving a FAPE. The case made its way to the Supreme Court last fall and was heard in January, 2017.
The Supreme Court ruled that the “more than merely de minimus” standard did not go far enough to ensure that children with disabilities receive a free appropriate public education. The Court determined that schools must offer IEPs that are reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances. That means that schools can’t just put basic goals on the IEP and call it a day — they must develop goals that will help the child progress in school to the best of his or her capabilities.
I find this whole debate ridiculous given that in 2017, there is still any argument that our children deserve less or barely more than zero results in their educational career. Isn’t it much more expensive for society to not teach them, and to pay for institutional care into their old age? For too long, society has shamefully accepted harmful, dismissive and derogatory limits on our kids’ abilities, even resisting granting them equal access into mainstream classrooms. But no one has a crystal ball to determine how far the human spirit and intellect can overcome its challenges, and clear legal standards with bite will force schools to keep up with scientifically proven methods that work.
Sarah is now in a public middle school with a wonderful special education teacher, excellent support staff and a supportive principal. These dedicated educators relish in Sarah’s quirks, but we are playing catch-up from years of neglect. Without proper guidance from the high court, such a luxury of confidence in our school for families like ours remains an ephemeral condition, which can evaporate as quickly as staff turnover. Now that we have a new standard for meaningful educational benefit, I hope this is the key to opening lines of honest communication with educators about what our kids need for their independence and growth (it’s also the key to avoiding future lawsuits). And I hope that schools will place a new “value” on the education of our children because our kids and their different ways of being are immensely and intrinsically valuable in a world that increasingly lacks humility, compassion and boundless love. ~Written by Julie Marshall, Mom of Sarah
Why, you might ask, am I giving a detailed analysis of the Supreme Court’s decision? Well, there are a couple of reasons. First, I’m Gracie’s mom and I already knew about FAPE and IDEA and IEPs long before this case came down. That’s the world we live in, the world of special education and politely fighting with educators and schools. (Oh, I’m sorry, it’s called advocating.) And second, because there are many, many other parents and caregivers out there who also spend way too many hours advocating for their special needs children. It’s what we do.
The Endrew F. case provides a glimmer of hope for parents of children with unique learning needs. Because of Endrew F., schools have a little more accountability. It’s not just “take it or leave it” at the IEP meeting anymore — the schools are now obligated to provide an education that is reasonably calculated to help the child learn to the best of his or her ability. Parents should insist on IEP goals that are designed to push their children to their full potential and for regular progress reports to ensure these goals are being met.
As parents, we want what’s best for our children, regardless of their abilities. As Gracie’s mom, I want her to be challenged academically but accommodated physically so that she does not become exhausted from school and end up in the hospital. I will be much more conscientious of her IEP goals from now on, making sure they are designed to help her grow with her peers. I am hopeful that the Endrew F. decision will become a well-utilized tool in every parent’s IEP toolbox, so that we can all work together with the schools to help our children learn and grow. After all, that’s what we do….It’s called advocating, and we’re all experts at it.
Editor’s Note: Do you want to dig into more information on this court decision? We highly recommend the WrightsLaw website for extensive legal information about a variety of special education topics. Their recent newsletter has multiple articles on the implications of the Endrew F. decision.
For thousands of families across the world and for ACCO, 2005 was one of those remarkable times when we experienced a significant sea change in the treatment of very young children with a diagnosis of life threatening Progressive Infantile Scoliosis.
In 2001 we became acquainted with Heather Hyatt, mother of a beautiful four year old named Olivia, who initially reached out to us to help her find a preschool program for her precious child diagnosed with severe Progressive Infantile Scoliosis. At the time, Olivia had already undergone halo procedures. However, Heather never accepted that a single intensive, invasive and premature procedure of spinal fusion surgery was the only way to treat Olivia’s condition. With courage and determination, Heather began an international search for a cure, and through her perseverance, her journey lead her to the extraordinary and brilliant Dr. Min Mehta, a Pediatric Orthopedic Surgeon from London. We were unbelievably fortunate to have Olivia join our program and Heather has taught us that nothing is stronger than a parents love for their child. Unfortunately, Olivia was too old to benefit from Dr. Mehta’s technique, but she has taught us all a lesson in what true strength looks like. As many of you know, we lost Olivia in February of 2016, however, she will always be remembered in our hearts as the inspiration for the Infantile Scoliosis Outreach Program (ISOP). Olivia and her story will not be forgotten.
When Heather met Dr. Mehta, who suffered from juvenile scoliosis, she was pioneering a noninvasive procedure to cure vulnerable babies with Progressive Infantile Scoliosis. Over the last 12 years, this initiative, spearheaded by Heather, became an established program of ACCO, which has developed into a global effort, spreading knowledge, defining better options for families and organizing free, hands-on training for hundreds of doctors and others on Mehta’s Growth Guidance Casting, resulting in thousands of babies being cured gradually without dangerous surgery.
Dr. Min Mehta left us in August 2017 and while there is no way to adequately express the heartfelt gratitude we feel, we understand how incredibly fortunate we were to have known her and what an honor it has been to work with her. Dr. Mehta once said that, from the age of six, she had always wanted to be a doctor, and she faced enormous challenges, including a negative and dismissive perception of women in the medical field. However, this gentle, non-invasive technique would not have been possible without her significant life’s work, and we know her enormous impact will continue to spread around the world. Heather, as well as many others that knew her, have heard so many life changing and grateful stories from parents and the medical community about the unbelievable impact that Dr. Mehta has had. She is considered the global authority on the only life threatening condition in the world of pediatric orthopedics.
For her compassion and dedication to making the world a better place and for her legacy, which she has left for everyone that has been touched by Progressive Infantile Scoliosis, Dr. Mehta will be forever missed but will never be forgotten, nor will the lifesaving work that ISOP will continue to spread until no more children suffer like Olivia and many others with this devastating, painful and life shortening condition.
Why Do I Love Fall? Creativity Abounds for Our Family!
Fall is upon us. Kids of all ages get excited about Fall festivals, trick-or-treating and especially, costumes! Halloween can be a great time of year for kids with disabilities as it is inclusive of all kinds of kids, families, costumes and behavior. However, sometimes it also challenges our creativity when it comes to accessible activities and costumes.
My daughter, Izzy, uses a wheelchair which can make accessibility a challenge. Door to door trick or treating is out of the question in our neighborhood, but many communities offer trick-or-treat streets or trick-or-trunk. These are great because they are very accessible. Check out this list of activities for families in the Denver Metro Area for ideas. If you live in other areas of Colorado, your local newspaper, a community Facebook page, or your child’s school may be good places to find out about fun family activities.
Many of you may experience uncomfortable looks and stares from other kids and even adults during the year, especially if your child’s disability is obvious or visible. The great thing about Halloween, is that it is ok to stare. And it actually makes for great opportunities for other kids to come up and approach our kids. One of the ways to encourage interaction for our sons and daughters is a creative costume!
I’m sure we have all seen the elaborate costumes online that others have created for kids in wheelchairs. We always try to make it a costume theme for the entire family. That way, my daughter, Izzy, is included in the family activity we are doing for the Fall. Halloween is also a good time to create a costume that reflects your child’s special or unique interests. For older children and teenagers who want to fit in with their peers, you can consider talking to friends about creating a theme that everyone can join.
I do enjoy making things and the wheelchair allows for being creative in my costumes. My daughter has had easy to adapt costumes (witch, jellyfish) to more difficult and elaborate (Peanuts, Flintstones). For some creative ideas about costumes for wheelchairs and strollers, check this out! Read about sensory friendly costume ideas from other parents.
We always want our sons and daughters to experience the joy of seasons and holidays and to be included in our communities. This time of year we have some unique opportunities to make that happen. Enjoy and relish the stares!
Editor’s Note: Does Fall inspire your creativity? What does your family enjoy doing in the Fall? Where have you found fun, accessible family events? Do you have a great costume idea to share? Email us at p2p-co@yahoogroups.com OR post a picture on our Facebook page!
Are YOU Connected? It’s free and easy to join Parent to Parent of Colorado, an active community of parents with sons and daughters with disabilities and special health care needs who support each other on our journey of parenting.
A Magical Time or Frozen Out?
Taking Sarah to A Broadway-Bound Musical
On a crisp Saturday morning in mid-September, my daughter Sarah, 13, and I got ready to go see Frozen the Broadway-Bound musical at the storied Buell Theatre.
She wore a black velvet dress and sensible REI shoes, while I put on a Kohl’s polka dot dress and Ann Taylor heels I had bought in the late ‘90s for a job interview, which led to painful blisters after the matinee. But it was well worth it.
Full of nerves, I met Sarah’s grandma outside the main doors and we began climbing sets of stairs to the top floor balcony, enjoying the view out the tall glass windows of downtown, along with the rainbow of sparkle dresses and tiaras on toddlers passing by.
Outside the door, we shook hands with Lori Garza and Mike Prosser, Patron Service and House managers respectively, for this portion of the Denver Center for Performing Arts. Along with us was Kirk Petersen, Associate Director of Ticketing Services.
I like to tell my friends I set this up as a “come to Jesus” meeting, even though I am not religious and if I were it would be of a Jewish faith. This was an endearing phrase my husband’s devout Catholic stepmom liked to use when the family needed to all come together to get some clarity on an important issue at hand.
For us, the issue at hand was Sarah and her manifestation of autism. Sarah rocks in her chair and when she is happy and thrilled by something like a musical, she emotes joyful yet truly unique noise, something like “ninga ninga ning.” And she likes to sing.
The trio assured me that they had their “A team” on the balcony to assist us with any issues that arise, and even offered to show me our seats ahead of time. Inside, we met Jasmine Palacios and Rhonda Miles, ushers assigned to monitor our area. They could not have been any kinder. Honestly, I think all of us were nervous about what would happen.
The house lights went down and Act 1 began with a swirl of colorful costumes and perfect-pitch song. By the time we got to “Do you want to Build a Snowman,” Sarah was feeling the moment and since her chair had rollers on it, she rocked right into the empty space behind us in ADA seating. But no matter, my mom and I simply wheeled her right back.
Sarah began tapping on the metal bar in front of her; so did the little girl to our right and with more gusto. A boy in front of us asked a litany of questions to his mom while eating Robin’s egg blue cotton candy. Of all the activity around us, Sarah’s humming blended right in.
I don’t think I stopped smiling the whole first act. Sarah was mesmerized by the lights and special effects of icicles forming around the stage and we all gasped when Elsa’s gown turned a bright starlight silver after the last verse of “Let it Go.”
This could have gone horribly wrong, if it were a night crowd, or if the DCPA folks, including Heidi Bosk, hadn’t been so incredibly accommodating. Bosk had called me after I wrote a letter to the editor explaining how a ticket agent told me on the phone that if Sarah bothered anyone who complained, she would have to leave and watch the musical (at $80 apiece) on a screen in the lobby.
Well, that wasn’t entirely true. The actual rule is that discretion is up to the house manager. Which is why I suggested a pre-meeting to iron out details and happily become in their words, a “guinea pig” family to test the waters for special needs kids at the DCPA’s arts events.
The DCPA went the extra mile to ensure Sarah and her family had a magical time. And Petersen tells me that they are planning a sensory friendly event soon. It’s disappointing that Disney – which had done a sensory friendly Lion King musical in New York about six years ago — did not plan any opportunity for families like ours to feel welcomed when traveling to Colorado to offer this beautiful performance of the arts at its very best. But this is progress.
The next step is for you reading this at this P2P blog, Parenting with Altitude, to contact me, because my good friends Carl and Rhonda Benton, have graciously offered to purchase a block of seats to an arts event for our families! So please contact me with ideas! I am thinking perhaps the sensory friendly Nutcracker by the Colorado Conservatory of Dance this December.
Take A Breath….But Don’t Be Fooled! Part 2
It’s been a bumpy ride for the last few months when it comes to health care issues. An unprecedented number of groups have come together in opposition to first, the American Health Care Act then the Better Care Reconciliation Act and finally the Cassidy Graham bill. Disability groups have joined coalitions to #SaveMedicaid and #ProtectOurCare. ADAPT advocates across the country have put their freedom on the line through actions that send the message, “I’d rather go to jail than die without Medicaid”! Throughout July, August and into September, the fight to save Medicaid continued! We all breathed a sigh of relief when the September 30 deadline for legislation passed without a final bill in the Senate.
But…. like the warning sign above, don’t be fooled. The threats continued! In August, Senator McConnell announced that he would reintroduce a bill to repeal the Affordable Care Act that was first proposed in 2015. Within another few hours, several Senators stepped forward to reject “Plan C”. However, many in the Congress are committed to getting rid of the ACA and are merely regrouping for the next round. Medicaid came under additional threats when the Senate returned from its August recess. Although there were hints of a bi-partisan solution being crafted, that effort was stopped. Instead, in mid-September, the Cassidy Graham bill appeared at the forefront of the Senate’s efforts to repeal the Affordable Care Act. Once again, coalition partners came together to fight block granting which is another way to cap and cut Medicaid.
Having trouble keeping track of all of the proposals and changes? The Kaiser Family Foundation offers a comparison chart that may be helpful!
But….don’t be fooled! Although Congress is now turning to budget and tax considerations, the threats are not gone. We don’t know if the next threats will come through more legislation, through budget restrictions, through executive actions or all three. The disability community and our allies need to be prepared for whatever is coming next!
Keep in mind that we need to have a clear vision of WHY we take on this fight. And the WHY is really a WHO. Who in your family or your circle of love and care and friendship is this about? Whether you and your family have employer provided health insurance, private insurance, or Medicaid, the threat is real and is still with us! The Medicaid Supports and Home and Community Based Services that help us and our loved ones live and have meaningful, purposeful lives in our communities of choice have been under attack, and the attack will come back, just with a different label and look. So focus on the face of YOUR ‘Who’ and how those supports make the difference in their life.
From Peter Berns, CEO, The Arc, “This is going to be a long road, but one that people with disabilities, their family members, support staff, and friends will navigate together. We must unite and reject cuts that will take away the dignity and independence of people with disabilities. This is the civil rights fight of our time, and we will remain vigilant to protect all that has been built to ensure the inclusion and equality of people with intellectual and developmental disabilities in our society.” Read more about Health Care Issues for People with Disabilities.
Like the sign says, Don’t Be Fooled! Steep Grades and Sharp Curves are Ahead! In the coming months, we all want to keep these 3 things in mind…
At Parent to Parent of Colorado, our Mission is to connect families to support, to join in effective group advocacy and to promote inclusive communities. You can stay connected to us (and all of the latest in health care and more) through our Online Parent Support Group or our Padre a Padre (Spanish) Support Group, our Parenting with Altitude blog, our Facebook Page and weekly Facebook Live broadcasts, Twitter or Instagram(p2pco).
We’ll be with you through the sharp curves, the steep grades and the bumpy roads of parenting our sons and daughters with disabilities and special health care needs!
Editor’s Note: This blog was originally published July 19, 2017 with updates added October 2, 2017.
Contact your Senators/Representatives — Call, Fax, Email or go visit a local office. Use Social Media
The message is clear: “Senator/Representative _____ must reject any bill that causes large coverage losses, ends the Medicaid expansion, caps and cuts the Medicaid program, or guts critical protections for people with health conditions.”
Focus on telling stories when you contact your Senators/Representatives. Write stories or record brief 60-90 second videos about you, your child, your parent, your relatives, or your friends who have a disability. Include pictures. Share your story of how access to health care and home and community-based services are important to you or your loved ones with disabilities. Those stories will particularly be impactful. Share these stories on Facebook and Twitter and ask your friends and family to do the same. Our Senators/Representatives need to see the human face of Medicaid.
Contacting Congress allows you to easily search for your Senators and access information on their D.C. offices. • How to Set up a Meeting with your Member of Congress – Families USA • Medicaid Cuts Equal Disability Cuts Toolkit – TASH
My Parenting Journey: A Superlative Prognosis
She walks out of the testing room, clipboard in hand. She’s young; probably first or second year out of college. Almost timidly she looks at my wife Renee, and me and says, “Your son does not qualify for speech therapy. He would be better served in augmentative communication. He will never talk as his main form of communication.”
It’s the kind of arrogant, ignorant statement only the purely-by-the-book academic world produces. No real world experience. No exceptions to the data. No understanding of the dynamic nature of the human spirit and mind. No room to accept positive possibilities. No admittance that the seemingly impossible can be overcome.
Renee starts crying. I stare at this therapist in fury. My insides boil. How dare she make such a declarative statement about my son – MY SON – when he’s only two-years-old! At this moment, the angel and demon of my mind flare up in debate of whether to lash out at this young therapist with all the righteous indignation I can muster; or instead kindly dismiss her prognosis and let the fire inside spur me to find the resources my son needs to overcome the challenges he was given.
As much as I may want to choose the demon’s advice, I kindly dismiss this whole evaluation. When we all get home, I begin looking for a private speech therapist, one I’ll most likely have to pay for out-of-pocket. But regardless, I’m willing to do what it takes so my son will learn to overcome – he WILL learn to talk.
Fast-forward six years and my son Zak is now eight-years-old. He talks for all of his communication. Renee and I began teaching him the alphabet phonetically – so “B” was “Bah” instead of “Bee”; “S” is “Sssss” instead of “Es”; etc. He was able to say his name by sounding out each letter “Z” “A” “K” then working to blend it all together for Zak. (We actually changed the spelling of his short-name from Zach to Zak in order for him to more accurately sound out his name phonetically).
We also found a wonderful private speech therapist for him to see about twice a week. On top of that, when he started Kindergarten at our neighborhood public school, we were blessed to find they have the most amazing speech therapist ever. She engaged Zak with her personality and speech games, which led to vast improvements in his overall speech communication year over year. There was a time where the vowel sound for “E” was so difficult for Zak to produce (he would always say it as “ah”), we were beginning to wonder if he would ever be able to achieve that sound. Near the end of Kindergarten, he was successfully saying the vowel sound for “E” and is quite the talker in a multitude of settings.
And sure, obstacles remain – sometimes it can be hard for someone unfamiliar with Zak to fully understand what he’s saying. But with good listening ears and patience, he can be understood well. He loves greeting people (“Hi Ms. Smith! How are you today? How was your evening?”), introducing himself (“My name is Zak. What’s your name?), and calling out all the musical notes and chords he hears in songs (“A sharp minor” “C flat major”) He has a surprising musical gift that hears perfect pitch and he’s self-taught all the notes and chords on piano and guitar.
Sometimes, I think about tracking down the ill-informed therapist to show that purely booked-based academics and rigid assessments based on a few data points will never, ever fully measure nor define the potential, tenacity and achievement of one individual. There’s knowledge and wisdom that can only come from opening one’s eyes to accepting the possibilities, the dynamic probabilities, and even the outright miracles that can happen.
But I’m not quite sure if I’ll chose the angel-side in my approach… or unleash the devilish “I-told-you-so / We-were-right-you-were-so-so-wrong-so-very-wrong/ Boom-in-your-face / He-talks-when-you-said-he-never-would-how-do-you-like-dem-apples?”
I suppose for now, I’ll merely hope and pray she’s learned wisdom after six-years working in her field and will spare any other family a superlative negative prognosis.
Editor’s Note: We always hope that professionals will give us an honest assessment without making predictions about our son or daughter’s potential….because so many of our children have exceeded their “predicted” potential! How do you want professionals to share information with you? We’d love to hear your advice and experiences on our Online Parent Support Group! Email us at p2p-co@yahoogroups.com
Are YOU Connected? A parent to parent connection provides you with support on the journey of parenting your son or daughter with disabilities or special health care needs. Join Us!
Mi Viaje de Crianza: Bendición en Disfraz
Me tumbé en el ensordecedor silencio esperando escuchar tu primer grito. Había viviendo mi vida hasta ese punto pensando que no hay necesidad de preocuparse, las cosas buenas siempre me suceden, todo siempre resulta bueno… son estos pocos momentos que cambiaron esta creencia fundamental y mi viaje con la preocupación acababa comenzar.
Te llevaron inmediatamente a la ICU… no fue hasta 10 días más tarde que pudimos mantenerte por primera vez. Tardó 6 semanas antes que pudieras volver a casa… esperamos meses y meses antes de que vimos tu primera sonrisa. Y no fue hasta 3 años más que tu caminaste lentamente en nuestros brazos.
Después de un largo viaje de pruebas buscando la causa raíz, finalmente conseguimos nuestra respuesta… Tú me tienes- esta persona de Beirut, Líbano que conoce a este tipo de Delhi, India en el estado de Nueva York, de todos los lugares, y ahora tengo un bebé con una condición genética rara y aleatoria que sólo docenas en el mundo tienen. Ya no estaba segura…
¿Todo va a estar bien? ¿Alguna vez me van a pasar cosas buenas?
Decidimos tomar las cosas en nuestras propias manos. Dejé mi trabajo, nos trasladamos a Colorado para un nuevo comienzo necesario, comenzó una empresa de apoyo a las familias con necesidades especiales y pongo mi enfoque en ti y el diagnóstico. Estos pasos audaces que tomamos abrió muchas puertas para nuestra familia. A través de las redes sociales, ahora estamos conectados con 39 familias de todo el mundo que tienen el mismo diagnóstico. Tenemos un grupo de 9 investigadores emocionados por aprender más acerca de sus historias. Y gracias a una familia maravillosa en el mismo barco que nosotros, tenemos un punto de partida para recaudar fondos los $12,000,000 necesarios para llevarnos a ensayos clínicos. Y tú… dulce niña… estás haciendo un tremendo progreso; el foco en usted está haciendo una gran diferencia en su desarrollo.
Reflexionando atrás, me doy cuenta de que tenerte, con tu singularidad, es otra cosa buena que me ha sucedido. Tuve la oportunidad de ser una mejor persona. Tuve la oportunidad de gastar cada poco de mi energía en algo que importa tanto. Tuve la oportunidad de conocer a familias maravillosas de todo el mundo y gestionar un proyecto de investigación de vanguardia que tiene el potencial de cambiar el mundo.
Y tú … dulce Yara … No puedo empezar a decirte cómo llenas nuestros corazones y vidas con alegría y amor. Juntos, seremos testigos de cambios que darán poder a las generaciones venideras. Juntos, disfrutaremos cada poco de nuestro viaje … juntos haremos de este mundo un lugar major.
Eres mi bendición disfrazada. Te amo a la luna y de regreso y a la luna otra vez…
Nota del editor: Sobre la condición…Usted puede aprender más sobre los ángeles de la Guardia de Jordania ver Carole y su familia en: https://www.youtube.com/watch?v=tNUhvSLTK3M Para más información sobre trastornos raros, National Organization for Rare Disorders
El Síndrome de Jordan o la variación del gen PPP2R5D es una mutación genética rara y aleatoria. La condición se ha descubierto recientemente y no se sabe mucho sobre él hasta ahora. Algunas características incluyen retrasos globales en el desarrollo, mayor tamaño de la cabeza, hipotonía, retraso en el habla y posibles convulsiones. Con la variación que afecta la función del cerebro y no la estructura, los investigadores creen que hay un potencial para el tratamiento… un tratamiento que no existe todavía. Tenemos un equipo reunido en busca de una cura o incluso la reversión del gen, aprender más sobre la investigación. Más información http://jordansguardianangels.org/ y www.ppp2r5d.com
My Parenting Journey: Blessing in Disguise
I lay down in the deafening silence waiting to hear your first cry. I had lived my life up to that point thinking that there is no need to worry, good things will always happen to me, everything always turns up to be okay… it is these few moments that changed this fundamental belief and my journey with worry had just started.
You were immediately rushed to the ICU… it wasn’t until 10 days later that we were able to hold you for the first time. It took 6 weeks before you could come home… we waited months and months before we saw your first smile and it wasn’t until 3 years later that you slowly walked into our arms.
After a long journey of tests searching for the root cause, we finally got our answer… You have me, this person from Beirut, Lebanon meeting this guy from Delhi, India in Upstate NY, out of all places, and ending up with a baby girl with a rare and random genetic condition that only dozens in the world have. I just wasn’t sure anymore… is everything going to be okay? Are good things going to happen to me?
We decided to take matters into our own hands. I left my job, we relocated to Colorado for a needed fresh start, started a company supporting families with special needs and put my focus on you and the diagnosis. These bold steps we took opened many doors for our family. Through social media, we are now connected to 39 families around the globe that have the same diagnosis. We have a group of 9 researchers excited to learn more about your stories and thanks to a wonderful family in the same boat as us, we have a starting point towards fundraising the required $12,000,000 to get us to clinical trials. And you… sweet baby girl… you are making tremendous progress; the focus on you is making a big difference in your development.
Reflecting back, I realize that having you, with your uniqueness, is nothing but another good thing that has happened to me. I got the opportunity to become a better person. I got the opportunity to spend every little bit of my energy on something that matters so much. I got the opportunity to meet wonderful families from around the globe and to manage a cutting-edge research project that has the potential to change the world.
And you… sweet Yara… I can’t begin to tell you how you fill our hearts and lives with joy and love. Together, we will witness changes that will empower generations to come. Together, we will enjoy every bit of our journey… together we will make this world a better place.
You are my Blessing in Disguise. I love you to the moon and back and to the moon again…
Editor’s Note: You can learn more about Jordan’s Guardian Angels see Carole and her family at: https://www.youtube.com/watch?v=tNUhvSLTK3M For more information on Rare Disorders, check out the National Organization for Rare Disorders. Jordan’s Syndrome or variation on the gene PPP2R5D is a rare and random genetic mutation. The condition is newly discovered and not a lot is known about it as of yet. Some characteristics include global developmental delays, larger head size, hypotonia, delayed speech, and potential seizures. With the variation affecting the function of the brain and not the structure, researchers believe there is a potential for treatment… a treatment that doesn’t exist as yet. We have a team assembled searching for a cure or even reversal of the gene, learn more about the research. Visit www.jordansguardianangels.org and www.ppp2r5d.com
Are YOU Connected? Connecting with other parents helps you discover that you are not alone! Join 4000 members across Colorado who support each other in parenting our sons and daughters with disabilities and special health care needs! Visit: www.p2p-co.org
The Power of Parent Support: Sharing Your Connection Stories!
Connecting Families by Building Inclusive Communities….Taking Action…Supporting Each Other! At Parent to Parent of Colorado, we take our mission seriously! What began as a small group of parents who were seeking to develop a grassroots support organization 20 years ago has grown to over 4000 members across the state of Colorado! We also have members in Wyoming and Utah (where there is not a P2P USA Affiliate currently) and members from other states who have joined us when they are anticipating moving to Colorado.
Our members represent the diversity of parents living in our state…from those who live along the front range to families in rural and frontier areas. From single parents to married couples to grandparents and foster parents. We represent all racial and ethnic backgrounds as well as a diversity of political philosophies and ideologies and parenting philosophies. Fundamental to our group is value and respect for each other.
What began as a private email list serve as a way to connect parents in a safe, confidential atmosphere has also grown over the years! We continue to support parents daily with our Online Parent Support Group (yahoo list serve) and we have also expanded to Padre a Padre de Colorado (a private Facebook group to support parents who communicate in Spanish) and to a public group on our Facebook page that includes parents, professionals and community members! We have an online group for members who want to focus on public policy. Parenting with Altitude is a blog with the unique perspectives of parents and it’s sister, Parenting with Altitude LIVE, is a weekly Facebook Live broadcast focusing on current public policy issues.
As part of our 20th Anniversary celebration, we asked both parents and professionals to tell us how they got connected to Parent to Parent of Colorado and what they feel is the power of parent support. The answers were compelling, touching, moving, celebratory and more! We want to share a few of the wonderful comments we received!
We also asked how parents first connected to P2P-CO and received some terrific responses!
Some members knew us as professionals before becoming parents. Many of us wear multiple “hats” as parents, professionals and/or advocates. However, our parent ‘hat’ is always part of our P2P response!
Finally, this parent sums up the importance of Parent Support and the value of having a diverse group of parents who can respond to each other, as we say, ’24 hours a day, 7 days a week, 365 days a year’:
Whether you were there from the beginning or are just getting started or are somewhere in between, we appreciate your part in Parent to Parent of Colorado. If you are a professional who works with families, we value your participation and contributions to our parents. As the P2P Staff and Advisory Board we marvel at the thoughtful, kind, consistent responses provided to our members when there is a need. We truly see the importance of Parent Support on a day to day basis and appreciate the unique contributions of each of our members!
Editor’s Note: For more information about the services and supports that Parent to Parent of Colorado provides, visit our Family Services page. Are YOU Connected? Join US now! It’s free and easy! Looking for hundreds of parent recommended resources? Visit The Resource Storeroom! Read more about how Parent to Parent of Colorado got its start! The History of P2P-CO
My Parenting Journey: What Will The Future Hold?
I remember as if it were yesterday … the first day of preschool for my daughter. There were so many questions and unknowns. Would she ever be able to talk? Would she learn? Would she have friends? Am I a good parent? How can I continue to be a strong advocate and have a positive relationship with the people at the school? Will our family be able to survive with all of the added stress and responsibilities of having a child with a disability?
When I was beginning this journey as a parent and as an advocate, I remember learning about the Individuals with Disabilities Education Act (IDEA) and hearing a quote from the law. Part of it said that the law was to ensure “equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.” At the time, I couldn’t even fathom those things for my daughter. Now I know that focusing on equality of opportunity and full participation, not only in school, but also in life, was one of the most important things I could have done.
My daughter has grown up knowing that if she wants to do or try something, we will figure it out and will try to make a way for it to happen. Helping her learn to be independent in high school with getting herself out of bed and ready for the day, getting herself to the bus in the morning, and working on getting the night time routine done (in a reasonable amount of time) have been some of the best precursors to prepare her for getting up and ready for a part-time job, figuring out her transportation issues for the day, and making checklists for all sorts of tasks. When the time came for her to be finished with school, I felt as if I had been released from jail … really a prison of my own making.
During her school years I was filled with stress, worry, and questions. What if I haven’t been a good parent? What if I didn’t advocate effectively enough? What if she is lonely throughout her lifetime? As she finished, I realized that the answers had come through patience and persistence. I had done what needed to be done throughout her life. I tried to stay in the middle of the two extremes of “doing it all for her” and “leaving her without any support”. I had facilitated opportunities for her to have lasting friendships. I had helped teach her how to advocate for herself and get what she wants and needs.
Fast forward to today – 19 years after that first day of preschool. The questions were big but the answers did come. Year after year the questions became bigger and sometimes harder. And those newer, bigger questions were also answered – sometimes with surprises, sometimes with disappointment, and sometimes with more questions. As she approached graduation from high school three years ago, there were so many new and different questions. This biggest question “What will the future hold?” weighed heavily on my mind.
My daughter is now a young adult with activities and interests of her own. She continues to have new experiences and become more independent. Of course there are still questions. There are still times when I wonder what the future will be. But I have those for every area of my life … so I think it’s normal.
If you are filled with stress and worry about your effectiveness as an advocate and parent, I encourage you to give yourself a break. You are making the best decisions that you know how to make and they are the best decisions for your child! There is a quote that says, “We will never arrive at our destination because the journey is parenthood.” That may be especially true for those of us who are parenting children with disabilities and special health care needs. No matter where you are in your journey, you are doing a great job! You are a terrific parent!
Editor’s Note: Getting connected to other parents can help you throughout your child’s life…from newborn to school age to adulthood. Being able to hear from other parents how they handle challenges can help you feel that you are not alone on your parenting journey. You also have a ready resource for all of those “life questions” you are wondering about. Are YOU Connected? Joining our Online Parent Support group is free and easy!
Are you a Community Member or Organization that would like to connect with us? Visit information for Community Members
A young woman, holding an ADA 25th Anniversary sign, marches in a rally. The sign reads, Disability Rights are Civil Rights.
Do A Lot, Do a Little…Every Little Bit Helps #SaveMedicaid
We continued to talk about other ways to make a difference. Now I should note that two weeks later I got a call from her then boyfriend/now husband who told me that she had just formed a new student organization called “Access Now! Dammit!” My shy, introverted daughter went on to form coalitions and alliances with a broad coalition of students and anyone else who join to look at wheelchair access and demand that their university make changes.
Did she chain herself to a door? Well, mostly she used the skills she had strengths in: writing, coalition building, one on one conversations and a commitment to justice. Did she sometimes take part in what the activist world calls an ‘Action’—meaning a sit in or some other form of more tangible protest? Yes. Sometimes. She refused to receive a leadership award publicly when the venue was inaccessible and instead sat in solidarity with others with mobility impairments who watched from closed circuit television in the basement. I was there that day and was delighted to see other students as well as faculty join them in the basement.
But that wasn’t her main role. She was often part of the team meeting in administrator offices, offering up solutions, presenting demands. They were a small but mighty group of dedicated students! By the end of her 4 years there they had accomplished their main goals of getting front door accessibility to the student center and a lift for wheelchair users up to the art and piano studios on the second floor of the art building whose classrooms could not be easily moved. I am proud of the legacy she and her team left.
So what is your role?
We each have a different amount of time, energy, skills and talents to dedicate to any cause. Right now, we critically need ANY thing you can contribute to #SaveMedicaid. Remember, no one goes it alone, we are all connected and together we are better. Here are some ideas how you can help:
A large group of advocates, standing and seated in wheel chairs, gather in front of the Colorado Capitol. They are holding signs in support of Medicaid.
Do you have more than an hour of time? Here are more ideas for you:
Two moms attend a rally to #SaveMedicaid. They are holding balloons and a Parent to Parent sign.
But my kids aren’t eligible for Medicaid and neither am I. Why should I get involved?
We often talk about the journey of parenting a son or daughter with a disability is a marathon, not a sprint. Likewise, advocating for supports and services for our loved ones and others who are in need is also a marathon. If each of us continuously and consistently do what we can, we will finish the race! A little or a lot…it all makes a difference!
But those little efforts (and the big efforts!) they put forth have served them well. My daughter learned then how to advocate and I’ve watched her use those skills in letter writing, in research and advocacy to work with her own career and her own daughter. Those skills were as valuable as her degree when it comes to the University of Life!
Need to Know More About Medicaid Issues? Here are some great, researched based, non-partisan sources:
Want to be part of our Parent to Parent Community that learns about, discusses, and takes action around policy that impacts people with disabilities? Join P2P-Policy! Send an email to infop2p@abilityconnectioncolorado.org with subject: Join Policy
image description: photo of an artichoke on a black background with text that says “BE AN ARTICHOKE. Prickly on the outside. Big heart on the inside. The vegetables of the world are uniting, and we’re not going away!”
Advice on Advocating for Medicaid: Be An Artichoke!
Editor’s Note: Carrie Ann Lucas is a long time member of Parent to Parent and a former Advisory Board member. She is an attorney and advocate for children and youth with disabilities, adults with disabilities and parents with disabilities. Carrie, who lives with significant disabilities, works and lives an active, independent life in her home and community and parents her 4 children who also have disabilities. Her life IS the vision of Parent to Parent: that parents and their sons and daughters are integral valued members of society with a voice in shaping their chosen communities. Carrie wrote a compelling Facebook post last week, and with her permission, we are publishing it here.
I finished reading the healthcare bill a bit ago. The Senate version really is much worse than the House version for disabled and poor people. The cuts to Medicaid are draconian. The elected representatives who vote for this bill are saying my life doesn’t matter. My children’s lives don’t matter. It is better to lock us up in institutions, let us die quick and forget about us.
Medicaid is the primary insurer for people with severe disabilities. I am triply insured. I have insurance from my employer (and I am a government employee, so it is dammed good insurance). I also have Medicare. I am also covered by Medicaid. I pay a premium (a small one) for my private insurance ($50/mo). I pay a premium for Medicare ($134/mo). I pay a premium for Medicaid ($200/mo) Neither my private insurance or Medicare cover attendant care.
I need attendant care to help me in and out of bed, to get dressed, to assist with toileting, to help with cooking, taking medication, and most importantly keep my ventilator — life support equipment, working properly. I don’t use nurses. I hire attendants — non medical people who I train to do my care–because it is substantially cheaper. Medicaid pays for this care.
image description: photo of Carrie Lucas, a woman with long brown hair and blue glasses. She is seated in a wheelchair and is holding a sign that says #SaveMedicaid
Under the AHCA, the Medicaid cuts will force states to stop Medicaid waiver programs that allow people like me to access Medicaid. These waiver programs allow states to offer Medicaid to people who ordinarily won’t qualify due to income.
Because I have worked my entire adult life, and paid into Social Security, I don’t qualify for Medicaid without these waiver programs. Without these waiver services, I can’t continue to live in my home. I can’t continue to work. I can’t continue to parent my children. I can’t continue to volunteer in my community. I would not be a contributing member of my community!
Some lawmakers accused us of criticizing the bill without reading it. I would have read it had they released it. It’s now released and I read all 142 pages of the Discussion Draft while I rode home from work. (And I read all 184 pages of the American Health Care Act, and I have read all 906 pages of the Affordable Care Act).
Other legislators have said they support the Medicaid cuts, and want a free market approach for healthcare. That is exactly what we had prior to 2009, and our country suffered for it. People died so that insurance companies and their investors could get rich from denying necessary healthcare.
I am pissed off that the people in charge promote policies that will cause unnecessary deaths, and deaths of people like me and my family and friends. I am stubborn as hell, and will not go down without a fight. I saw someone call people with disabilities similar to mine “vegetables” and claimed the world was better off without us. We use too many resources; we should just die quick to benefit society.
Ed Roberts once said if he was going to be considered a vegetable, “I decided to be an artichoke – a little prickly on the outside but with a big heart on the inside. You know, the vegetables of the world are uniting, and we’re not going away!”
People might think I am more of a thistle (really prickly on the outside), but here is my artichoke. I am going to be quite prickly on the outside because I love my family. I love my community, and our survival depends on being a lot prickly right now.
My Parenting Journey: Getting Started With Assistive Technology
My journey exploring Assistive Technology started when I was trying to find the best supports for my son Wyatt. Wyatt was diagnosed with Cerebral Palsy when he was a year old. Early on it was clear he would need many supports.
When he entered preschool at three he started to get frustrated that he could not express his wants and needs. This frustration was also being seen at home. He would scream for long periods of time. We had no way to determine if he was frustrated, in pain, or just angry. It was a very helpless feeling to have to guess what would comfort him. The school staff began exploring different methods of communicating. When Wyatt was five we worked with him on a way to express yes or no. He looks up for a yes response and sometimes will shake his head or look down for no.
We began trials of communication devices when Wyatt was 6. He started working with a private Speech Language Pathologist (SLP) who helped find the access that would work best for him. The method he used is auditory scanning with a head switch. His first device was a DynaVox. He then moved to a Nova Chat and now he uses an Accent device. He has a custom vocabulary that reflects his interests and his personality. He has just started spelling responses if he cannot find what he wants to say in his device.
It’s frustrating to watch your child struggle with mobility, independence, and communication. Assistive technology is available to assist with many of these challenges. Assistive Technology may provide a solution to many of these challenges.
The definition of Assistive Technology is: Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of a child with a disability.
Some examples are ramps, automatic door openers, grab bars, special computer software and hardware, automatic page turners, book holders, adaptive pencil grips, adapted switches, a variety of communication devices, and may other items.
It is difficult to know where to start to find what will work best for your child. The Center on Technology and Disability provides a wealth of resources for parents and professionals. You can also check out Assistive Technology – a Parent’s Guide
It is important to find the right person to evaluate your child and their needs. It’s also important that parents research what is available. Speak with other parents, ask questions in support groups. You know your child’s abilities and challenges better than anyone else. You need to know what questions to ask an evaluator. You also need to be able to give them your input on items you have found that you think would be helpful.
Because of the value of assistive technology in helping children become independent learners, IDEA 2004 (the special education law) requires IEP teams to consider the assistive technology needs of ALL children with disabilities. These needs should be evaluated regularly and progress or changes in needs should be discussed at least annually at your son or daughter’s IEP meeting.
The IEP team makes decisions about assistive technology devices and services based on your child’s unique needs so that he can be more confident and independent. The law requires schools to use assistive technology devices and services “to maximize accessibility for children with disabilities.” More on the Legal Resources for Assistive Technology
Your child may be evaluated by the school, an agency or a private therapist. A Physical Therapist can help with recommendations for wheelchairs and other mobility and supportive equipment. Speech Therapists can make recommendations for communication technology. Occupational Therapists can recommend items that may help with fine motor activities. Funding for devices can be provided by Medicaid, private insurance or your child’s school. If the school purchases assistive technology devices they may be made available for home use if the IEP team determines the student will benefit from using the device at home. Your child’s school should train staff and parents to support the child in the use of assistive technology devices.
It may also be possible to borrow items from a lending source to try before purchasing. Trying something can help you find the right fit for your child. All of the information that is available can be pretty overwhelming. But you can break this down into some easier steps:
Remember, your child’s needs will change over their lifetime, so stay up to date on the latest supports. For young children (Birth to 3 years old), the Tech for Tykes program works with Early Intervention Colorado to provide appropriate tech solutions. Most school districts have a team that is trained to provide assistive technology assessments and recommendations. There is a Statewide Assistive, Augmentative, and Alternative Communication (SWAAC) Team that provides technical assistance to school teams and also offers a loan bank so technology can be tried out before being purchase.
As your son or daughter enters transition (ages 14 to 21), it is important to think about the types of technology that will allow him/her to work, go on to other educational opportunities, and live as independently as possible. Assistive Technology Partners provides evaluations for youth and adults around a variety of assistive and mobility devices. Their evaluation clinics include: computer access, aides for daily living, sleep positioning, learning access, wheelchair and seating, and work site accommodations. Rehabilitation technology, including assistive devices, assistive technology services and rehabilitation engineering services to address barriers encountered with employment are part of the evaluation services offered by the Division of Vocational Rehabilitation.
There are many conferences and trainings to learn more about new assistive technology. Families at the Forefront of Technology offers an annual conference where parents and professionals come together to collaborate about technology for people with special needs. Another annual research conference is offered by The Coleman Institute for Cognitive Disabilities which works to integrate advances in technology that promote the quality of life of people with cognitive disabilities and their families.
Products are constantly changing. Websites and Facebook pages are available that share new products and/or supports. Finding new things that can improve your child’s life can be very exciting! This checklist can help you decide if a device or software will help your child. Technology can help your son or daughter access school curriculum, sports, social activities, communicating, and help them be more independent in their everyday life. Ultimately, advances in technology will assist people with disabilities to work and live as independently as possible in their communities.
Wyatt is now 14. He is very social and he has a very funny personality. He loves making people laugh. His ability to communicate has given him the opportunity to participate in school and the community. He does not have to depend on other people to make all of his decisions for him. Being able to express his wants and needs creates a better quality of life for him. He is also able to make his own choices in his medical care. He can also give his input for the people who support him during his day. These opportunities make a huge difference in his day to day life. As a parent, my journey of facilitating Wyatt’s assistive technology has been, at times, challenging and frustrating but equally exciting as I see new and changing possibilities for him!
Editor’s note: Technology is in the news! Read more about how technology is helping college students with disabilities pursue STEM careers. Watch a video by P2P Parent, Alice Brouhard, about how an app gave my daughter a voice. Check out The Resource Storeroom for thousands of parent recommended resources including additional ideas for Equipment and Technology
Let’s continue the conversation! Are you just getting started with Assistive Technology or are you a pro? What technology is your son or daughter currently using and how is it helping them at home, school, work or in the community? Share your ideas and any additional resources by emailing us at: p2p-co@yahoogroups.com
Are YOU Connected? Parent to Parent of Colorado Connects families of sons and daughters with disabilities and special health care needs to information and emotional supports. It’s free and easy to join us!
A sign with an arrow pointing to the left says This Way Street. An arrow pointing to the right says That Way Boulevard. How do you choose ESY or no ESY?
To ESY or Not to ESY? Another perspective on Extended School Year!
Extended School Year (ESY): The special education program and services that are provided during school breaks that support students with disabilities to maintain skills.
There are many, many families who choose an extended school year for their children, and for many different reasons. If your child is eligible and you desire it, as a parent you have a choice to make! To ESY or not to ESY?
For our family, though our children were eligible for ESY since pre-school and throughout their school careers, we always chose NOT to attend the program.
Image description: A picture of different color chairs on a beach with the ocean in the background. The caption says Summer Vacation
Summer has been the time that our family has really tried to be more typical.
When our children were home, I didn’t usually work in the summer, or I have had jobs with flexibility where I could reduce my hours or work from home. So obviously, having mom available at home is what has enabled us to do this.
Summer is when we sent the kids to camp-day camp when they were pre-school, moving up to overnight camps as it became more age appropriate. Sometimes these have been camps for children with special needs, but more often than not, we’ve adapted regular programs for them. This involved some creativity on our part and collaboration with programs as my son, Aaron has significant cognitive and physical disabilities and my daughter, Deidra is legally blind, and has health and mental health issues.
Image description: A picture of young men and women. Some are riding horses and some are leading the horses. In the background are summer camp grounds.
You do need to know it took some wheedling, cajoling, and encouraging of the staff to convince them that they were good and qualified to work with our kids-they weren’t necessarily to start with, but I wasn’t about to let them know that! And by the time the camps were done, they certainly could handle much more than to begin with.
Summer was also the time when we could work on other skills at a more leisurely pace. Depending on the summer, we would focus on physical skills, potty training, social or academic skills , but not usually all at the same time.
Image description: A picture of a family with a mother, father and two young boys. They are sitting on a blanket with a picnic at a summer concert.
We also used summer to do fun family activities: take picnic lunches or picnic suppers, free concerts in the parks and community theater. This meant that Mom and Dad got a little piece of culture in their lives and the kids learned to appreciate lots of different kinds of music or other performances. Since it’s outside, while they are on that learning curve of when to be quiet and when to talk, no one minds, because we aren’t sitting in a stuffy concert hall.
We are fortunate in Colorado to have great family activities available! We went to play grounds (search here for accessible parks and playgrounds), spent time with typical kids, solidified our friendships with other kids with disabilities, went camping as a family, took vacations, visited relatives, learned to swim and hung out at the pool.
Did the kids regress over the summer? Sure, a little. But the break from routine and the opportunity to try new things and just enjoy summer-looking for butterflies, touching dandelions under our chins, smelling the flowers, feeling ants crawl over our legs (a challenge for kids with SI issues!), burying each other in the sand was invaluable for our family!
Image description: A picture of a family hiking in the woods. On the left is a teenage boy standing, a young boy who uses a wheelchair. In the center is a woman standing. On the right is a man standing behind another young person who is using a wheelchair.
I won’t deny, it took some effort and planning and work on my part, but I wouldn’t trade those times for anything. I was always more than ready to send my kids back by the time school starts again.
So, if you think your child really needs ESY, and would be harmed without it, go for it!
But if you want to take another perspective, look at summer (or other school break times) as an adventure — a chance to see who your child is as a family member, a member of the community, a friend, a sibling, a person outside of the school setting. Don’t be afraid to fail. Not all of our summer activities have been successful, but we learned from each of them.
For more information on Extended School Year Services:
Let’s continue this conversation! What are your plans for summer with your family? What activities are you looking forward to? Do you need ideas for accommodations for your son or daughter?
Share with us by emailing p2p-co@yahoogroups.com Not a P2P Member? Join us today!
Mi viaje de crianza: Lo dio dirección a mi vida
A veces las situaciones suceden en nuestra vida y no tenemos ninguna comprensión en cuanto a porqué o cómo incluso veremos un día más brillante. Esto sucedió cuando mi hija, Valerie, nació con Síndrome de Down. Cuando fue diagnosticada por primera vez, yo tenía 6 meses de embarazo. Debido a su pobre funcionamiento cardíaco y renal, dijeron que no viviría mucho tiempo después del nacimiento, pero de alguna manera luchó y vivió 8 meses. También nació con un paladar hendido. Me esforcé por qué Dios me había dado 2 niños sanos y luego una hija con tantos desafíos de salud. No sabía si no era justo para Valerie, para mis otros hijos o para mí.
Cuando Valerie falleció, ella falleció en su sueño, en casa, a mi lado en la cama. Nunca olvidaré ese día, cuando la sostuve durante 4 horas. No podía dejar ir. Lloré y lloré con tanto dolor que pensé que mi corazón pararía como el suyo. Pero tuve que concentrarme y darme cuenta de que Valerie fue traída a mi vida par a darme dirección … y que ella lo hizo.
Luego volví a la escuela de enfermera el próximo semestre y después de unos años, tuve la oportunidad de trabajar con niños discapacitados, desde el nacimiento hasta los 21 años de edad. Hice esto durante 15 años. Me encantaron mis hijos especiales y me volví tan cerca de sus familias. Me di cuenta de que por mi dolor, Valerie me había dado la dirección en mi vida para poder entender lo que otros padres estaban pasando. Pude tener más compasión y comprensión, incluso después de las muertes de mis pacientes pediátricos. Pude consolar a la familia con más empatía, ya que entendí su dolor.
Hoy, ya no estoy trabajando de enfermera pediátrica, pero sigo trabajando con la comunidad de discapacitados. Me encanta mi trabajo profesional y mis horas de voluntariado. Me encanta hacer una diferencia positiva. A veces ocurren situaciones en nuestra vida que no tenemos control y no entendemos, pero la dirección que nos lleva es más gratificante que cualquier cosa que podamos imaginar.
Y con esto, he decidido correr el Maratón Colfax (26.2 millas) el fin de semana del 20 y 21 de Mayo de 2017. Estoy corriendo para mi hija Valerie, para el hijo de mi mejor amiga, Sergio, que también pasó de Parálisis Cerebral, y para todos los otros niños con discapacidades para el estado de Colorado. ¡También estoy corriendo para apoyar a Parent to Parent de Colorado!
No voy a mentir, estoy asustada porque sé lo difícil que será, pero estoy decidido a terminar con esta gran causa con mis pequeños ángeles que me ayudan a lo largo. Nunca en mi vida nunca pensé que iba a correr un maratón, pero nunca en mi vida nunca pensé que sería una mamá de un bebé con Síndrome de Down.
He estado entrenando agresivamente porque quiero que todos sepan cómo la salud de los niños es tan importante y los niños y padres especiales enfrentan una variedad de desafíos diarios.
Pido sus donaciones para Padre a Padre de Colorado a través de Ability Connection de Colorado. Ability Connection tendrá un stand en el Maratón de Colfax, así que si estás en el área, necesito tu apoyo, así que vayamos juntos para aumentar la conciencia y apoyarnos mutuamente en las direcciones que guían nuestro s hijos especiales.
Nota del editor: Usted puede apoyar a Padre a Padre de Colorado y mostrar su apoyo a Chrissy haciendo una donación en: https://www.coloradogives.org/P2PCO Usted también puede honrar a un ser querido con su donación ahora o en cualquier momento durante el año! El 100% de su donación va directamente a nuestro programa de apoyo y las donaciones a Padre a Padre son deducibles de impuestos (consulte a su profesional de impuestos).
Sergio
My Parenting Journey: Giving Direction to My Life
Sometimes situations happen in our life and we have no understanding as to why or how we will even see a brighter day. This happened when my daughter, Valerie, was born with Down syndrome. When she was first diagnosed, I was 6 months pregnant. Due to her poor cardiac and kidney functioning, they said she wouldn’t live long after birth, but somehow she struggled and lived 8 months. She was also born with a cleft palate. I struggled as to why God had given me 2 healthy children and then a daughter with so many health challenges. I didn’t know if it was fair to Valerie, to my other children, or to myself.
When Valerie passed away, she passed away in her sleep, at home, next to me in bed. I will never forget that day, when I held her for 4 hours. I couldn’t let go. I cried and cried with such pain that I thought my heart would stop like hers. But I had to focus and realize that Valerie was brought into my life to give me direction…and that she did.
A picture of Sergio, a young boy in a wheelchair with a small dog on his lap.
I then went back to nursing school the next semester and after a few years, I had the opportunity to work with children with disabilities, from birth to 21 years of age. I did this for 15 years. I loved my special kids and became so close to their families. I realized that from my pain, Valerie had given me direction in my life to be able to understand what other parents were going through. I was able to have more compassion and understanding, even upon my pediatric patients’ deaths. I was able to console the family with more empathy, as I understood their pain and sorrow.
Today, I am not practicing pediatric nursing but I continue to work with the disability community. I love my professional work and my volunteer hours. I love to make a positive difference. Sometimes situations happen in our life that we have no control over and no understanding about but the direction it takes us is more rewarding than anything we can imagine.
A picture of many people starting to run with a Colfax Marathon sign above them.
And with this, I have decided to run the Colfax Marathon (26.2 miles) the weekend of May 20 and 21, 2017. I am running for my daughter Valerie, for my best friend’s son, Sergio, who also passed from complications of Cerebral Palsy, and for all the other children with disabilities in the state of Colorado. I am also running to support Parent to Parent of Colorado!
I won’t lie, I am scared because I know how difficult it will be, but I am determined to finish with this great cause with my little angels helping me along. Never in my life did I ever think that I would run a marathon, but never in my life did I ever think I would be a mom of a Down syndrome little baby.
A picture of Chrissy running on a treadmill at her gym as she trains for the Colfax Marathon.
I have been training aggressively because I want everyone to know how children’s health is of such importance and special children and parents face a variety of daily challenges. Your donations to Parent to Parent of Colorado will help me reach my goal of continuing to support families who face daily joys and challenges.
Ability Connection Colorado (the umbrella organization over Parent to Parent) will have a booth at the Colfax Marathon so if you are in the area, I so need your support!
Let’s come together and raise awareness and support each other in the directions led by our special children.
Editor’s Note: We often talk about the journey of parenting as a marathon and we are so thrilled that Chrissy is putting her journey into action! You can support Parent to Parent of Colorado and show your support for Chrissy by making a donation at: https://www.coloradogives.org/P2PCO You can also honor a loved one with your donation now or at any time during the year! Your donation goes directly to our support our program and donations to Parent to Parent are tax deductible (consult your tax professional).
A picture of a woman running on a dirt road with blue sky and clouds on the horizon.
Did you know we have thousands of resources for parents and professionals in The Resource Storeroom? Find parent recommended resources on Disability, Education, Technology and more!
Are YOU Connected?
Parent to Parent connects families of sons and daughters with disabilities to information and emotional support. We work with all ages, all disabilities across the state of Colorado! Join us today! It’s free and easy to register!
Renee’s Story: At 30 weeks gestation, our little guy decided enough of this womb stuff and out he came. Our third preemie. Our oldest was only a few weeks early and was a typical preschooler. Our second child had only lived 45 minutes – all we wanted was for our son to live. So began a parenting journey that continues 30 years later. He lived, we breathed a sigh of relief. He had multiple challenges – we had questions – doctors didn’t have a lot of answers. I needed to talk to another parent, someone who’d been down this road before me. 30 years ago there were few programs but the social worker connected me to another parent. I’ve forgotten their names, but I remember how I felt after the conversation. Their daughter was Emily, she was 3 and I will never forget the last thing they said. They said that Emily was continuing to develop and learn but when she stopped it would be ok ‘cuz she would still be Emily.’ Wise words! I saw that there was another family who had been through this and lived to tell the tale. They were thriving – we could too.Are YOU Connected? The Power of Parent Support
Twenty years ago, in May 1997, a group of parent leaders from across the state met to build on the idea of parent support. They were seeking the type of support that only parents who have “been there” can give to each other. Out of these beginning conversations grew the idea of a group that could connect parents to each other across the state….Parent to Parent of Colorado!
It is our vision that parents and their sons and daughters are integral valued members of society with a voice in shaping their chosen communities.
These parents envisioned a group that was parent run and independent of the service systems in the state. And our mission became: Parent to Parent of Colorado (P2P-CO) is a parent initiated, parent controlled, organized group that builds inclusive communities, takes effective and constructive group action and supports each other on the journey of parenting our sons and daughters with disabilities and/or special health care needs.
Pretty forward thinking for a group of parents from all different perspectives! Many of the original founding members of P2P are still active with us today.
Today, families connect to Parent to Parent at all different times in their lives. Families join us with preemies, 3 year olds getting their first diagnosis, school aged children who have learning challenges, middle schoolers who have a diagnosis and the parents have never before met another parent with their child’s diagnosis. They find us and we connect them to a trained Support Parent in state or through one of our national partners. They come with high school age youth transitioning to the world of adult services — what does the adult world look like when the little yellow bus quits coming to their door? They come as older parents of adult sons and daughters who have been doing it on their own for decades and discover us and find out they do not have to do this alone.
The journey is unique to each family and the needs individual to the child, but through our connections parents realize that they are not alone, there are other parents who understand and can support you, and together is better!
isa’s story: I first heard about Parent to Parent when I was serving as a representative to the Colorado Special Education Advisory Committee. This group of parents and professionals meets regularly to advise the Colorado Exceptional Student Services unit on special education topics. I connected with Karen who was a P2PCO Staff member and also a representative on the committee. I was impressed with the ability of P2PCO to provide meaningful support to parents in a variety of ways. Karen and I also found common ground in the unique support needs of our children. When I had the opportunity to join the staff team, I found new excitement and enthusiasm for connecting families to the information and emotional supports they need on a daily basis.
From a small group of visionary parent leaders we have grown to over 4000 members across the state of Colorado (and even a few in Wyoming and Utah!). Our strength is found in the diversity of our membership, the variety of our experiences and the willingness to share our support with each other openly and generously. Through our outreach, information and referral services, we provided resources for over 16,000 individuals last year! Our active Online Parent Support groups answer questions, gives advice and supports each other with an average of 250 posts per month.
As we begin to celebrate the 20 year history of Parent to Parent of Colorado, we would love to hear how YOU got connected to us! Whether you are a parent, a professional or like many of us you wear both hats, please take a few minutes to share your thoughts in this brief survey. We will be sharing your stories about the Power of Parent Support throughout the year!
Are YOU connected?
We connect parents of sons and daughters with disabilities and special health care needs to information and emotional support. It’s free and easy to join us!
My Parenting Journey: Becoming a Parent Leader
Receiving the diagnosis of a disability or special health care need for a son or daughter is a life changer for most parents. All of us have different reactions to the initial diagnosis and subsequent changes that happen in our lives. For some parents, these changes include becoming a Parent Leader in the disability community.
Jessica Howard is a parent whose son’s diagnosis of autism propelled her into leadership. Today’s blog is an interview with Jessica by Marcia Tewell of the Colorado Developmental Disabilities Council.
MT: What has influenced your work on disability and social justice issues? Why do you do what you do?
JH: I was interested in political science in college and how policy decisions affecting marginalized communities are made. During that time Paul Childs, a developmentally disabled teen, was shot and killed by Denver police officers as they responded to a call at his family’s home in northeast Denver. I became interested in the community’s response to this tragic event, as well as the creation of the independent monitoring process for the Police Department. Additionally, my son was diagnosed with autism in 2012 and I became interested in not only accessing decent therapeutic services, but how to set high expectations and dream of a meaningful future for him.
MT: You participated in a Leadership Class sponsored by the DD Council. What are you doing presently as a result of your participation?
JH: As a result of learning more about systems and gaining important leadership skills, I am a member of the Colorado Developmental Disabilities Council as a parent representative. I joined the Protection and Advocacy System for Individuals with Mental Illness (PAMI) Advisory Council at Disability Law Colorado as an ACLU representative. I continue to learn more about policy changes and leadership within the disability advocacy community, especially in the criminal justice system. It has been good to try to put new ideas into practice.
MT: What are the most pressing issues you see for your family at this point in time?
JH: Consistent health care is our primary concern. My husband was employed by a large company when my child was diagnosed with autism, but his company was self-insured under the Employee Retirement Income Security Act (ERISA), which did not cover basic needs such as Occupational Therapy, Physical Therapy, Speech Therapy, or Positive Behavior Therapy. My son was on the wait list for the Children with Autism Waiver, and eventually was selected to receive services, but not for long before he aged out.
Luckily, my employer’s medical insurance picked up the coverage for his services when he aged out of the waiver. His services are now covered by my insurance, which is not a self-insured model, so there are basic requirements of what is covered and therapies are part of that. I don’t know what my husband and I would do if we went back to the issues of having a pre-existing condition and being shut out of insurance for our son.
The additional services my son receives at home have greatly helped with potty training, using hand gestures and visual supports. He can now indicate if he is hurt. It is great to get supports that assist his learning.
MT: What kinds of supports do you think would be most helpful to empower families as they move into a position of leadership within the disability advocacy community?
JH: It takes family supports to participate in advocacy work on a volunteer basis. There should be stipends for the time participating on a volunteer basis. There are many responsibilities as a parent and time is a precious commodity, so it is difficult with so few hours in the day. I suspect many working parents, especially single parents also have a hard time participating in leadership trainings, so their voice is often missing. It should not “cost” to participate.
MT: What keeps you moving forward in difficult times of advocacy? What inspires you to get up and keep going on the issues we face in our communities?
JH: Because my son is African-American and has a disability, there is an increased level of concern and advocacy to be done until he can take over for himself. There are issues of excessive force, suspension and expulsion, seclusion and restraint, and many others to which I will continue to lend my voice. As a mother, I have the job of doing advocacy for many years ahead.
I use the concept of hope to stay engaged in the change process. When I look back at life for persons with disabilities a generation or two ago when many individuals were institutionalized, changes can be noted. If we have made strides since then, we should be able to keep up the momentum now. There is so much work to be done.
Editor’s Note: The Colorado Developmental Disabilities Council funds local leadership development grants that take many forms and have a wide range of participants and locations statewide. The purpose of the grants is to give participants a skills and values base that allows them to advocate in policy areas for system change that will promote the values of inclusion and social justice as well as question the status quo. The Colorado Developmental Disabilities Council meets bi-monthly to implement a 5 year plan. The meetings are open to the public and family members are encourage to attend and participate. The Council also has several subcommittees, including Legislative and Public Policy and Planning and Grants, that family members can join. For information on Council or subcommittee meetings, please email: Seth Downs
Are you interested in increasing your Parent Leadership Skills? At P2P, we love the online option called Partners in Policy Making. You can take a number of self-paced courses with topics that include community living, history of disability advocacy, education, public policy, and employment. If you are interested in taking the Partners in Making Your Case (public policy) course and would like to join a discussion group on this topic, please email: infop2p@abilityconnectioncolorado.org All partners classes are free!
Are you connected? Parent to Parent of Colorado connects families of sons and daughters with disabilities and special health care needs to information and emotional support. It’s free and easy to join!
¿Tendrá que Marchar para Medicaid?
El 6 de Marzo de 2017, el Congreso eliminó la “Derogación y Reemplazar Obamacare” de su ubicación secreta y reveló al mundo el plan GOP para la atención médica. El anuncio tiene muchos de nosotros rascarse nuestras cabezas preguntándose si los servicios de Medicaid como hemos llegado a conocerlos va a cambiar. La respuesta aún no está clara.
Lo que sí sabemos es que el Congreso está avanzando rápidamente en una nueva agenda y algunos dicen que Medicaid será cambiado, posiblemente avanzando hacia las Subvenciones en Bloque. Palabra en la calle es que esto podría significar un 50% de reducción en los servicios para los beneficiarios de Medicaid en Colorado.
No conozco tu viaje como padre, pero estoy familiarizado con los pasos que tomas. Mi suposición es que para la mayoría de ustedes, Medicaid es la sangre vital del sistema de apoyo de su familia para su hijo con discapacidades o necesidades especiales de atención médica. Y sé que con el rasguño de una pluma en un documento sagrado blanco todo lo que han llegado a conocer aquí en Colorado puede desaparecer.
Lo que necesitas saber….
Medicaid está profundamente entrelazado con la Ley del Cuidado de Salud a Bajo Precio (Affordable Care Act-ACA). Colorado, junto con otros 30 estados expandieron los programas estatales de Medicaid, deduciendo los dólares federales correspondientes.
Como parte de los esfuerzos de “Derogar y Reemplazar” actualmente en curso en Washington, DC, el plan GOP establece una dirección diferente para Medicaid y servicios a largo plazo. En esta versión actual podríamos haber cogido una rotura mientras que los estados de la extensión de Medicaid serán apoyados en los niveles actuales hasta 2020.
Colorado podría ver un corte de 50% en los programas de Medicaid si el Congreso se mueve para implementar la subvención en bloque para Medicaid. La concesión de bloques permite a los estados más flexibilidad en cómo se utilizan los fondos de Medicaid. Sin embargo, estos fondos serían limitados y probablemente reducidos.
Recuerdo un tiempo sin Medicaid. Yo era una madre soltera y trabajadora de dos hijos. Durante los primeros once años de la vida joven de Mikelle, no recibimos Medicaid y nuestro seguro médico se negó a pagar los costos relacionados con su discapacidad. Sin embargo, Mikelle nunca se fue sin lo que necesitaba para progresar en su vida. Ella tenía una madre que era poderosa en sus esfuerzos de recaudación de fondos para pagar por sillas de ruedas, dispositivos de comunicación y terapias. Mientras que muchas cosas buenas vinieron de la recaudación de fondos continua, era agotador.
¿VAS a Marchar por Medicaid?
Hoy, apelo a sus instintos de supervivencia, le pido que despierte sus voces tranquilas ya que es el momento de Marchar para Medicaid:
¡Nuestras voces juntas son poderosas!
Will You March for Medicaid?
On March 6, 2017, Congress removed the “Repeal and Replace Obamacare” from it’s locked down secret location and revealed to the world the GOP plan for healthcare. The announcement has many of us scratching our heads wondering if Medicaid services as we have come to know them will change. The answer is still unclear.
What we do know is Congress is swiftly moving on a new agenda and some say Medicaid will be changed, possibly moving towards Block Grants. Word on the street is that this could mean a 50% cut in services for Medicaid recipients in Colorado.
I do not know your journey as a parent, but I am familiar with the steps you take. My guess is that for most of you Medicaid is the life blood of your family’s support system for your child with disabilities or special health care needs. And, I know with the scratch point of a pen on a hallowed white document all you have come to know here in Colorado may disappear.
What You Need to Know….
Medicaid is deeply intertwined with the Affordable Care Act (ACA). Colorado along with 30 other states expanded state Medicaid programs drawing down federal matching dollars.
As part of the “Repeal and Replace” efforts currently underway in Washington, DC, the GOP blueprint establishes a different direction for Medicaid and long-term services. In this current version we MAY have caught a break as Medicaid expansion states will be supported at current levels until 2020.
Colorado potentially could see a fifty percent cut in Medicaid programs as well as other impacts if Congress moves to implement block grant funding for Medicaid. Block granting and Per Capita Funding allow states more flexibility in how Medicaid funds are utilized. However, these funds would be limited and most likely reduced.
I remember a time without Medicaid.
I was a single, working mother of two. For the first eleven years of Mikelle’s young life, we received no Medicaid and our medical insurance refused to pay for any costs relating to her disability. However, Mikelle never went without what she needed to progress in her life. She had a mom who was powerful in her fundraising efforts to pay for wheelchairs, communication devices, and therapies. While many good things came from continual fundraising, it was exhausting.
Will YOU March for Medicaid?
Today, I appeal to your survival instincts, I ask you to awaken your quiet voices for it is time to March for Medicaid.
Contact your legislators today, tomorrow and the next day. Call until we know our young children, our school age children, and our adult children have the Medicaid services they deserve. Our voices together are powerful! Our Senators and Representatives in Congress are listening. It’s time to March for Medicaid!
Contact Elected Officials is a tool for finding your government officials at the federal, state and local levels.
Protect our Care Colorado is a coalition of organizations working together to share the impacts of health care changes in Colorado. There are several steps you can take to make a difference on their website. We encourage you to share your story!
Find more information on Public Policy on our website.
Editor’s Note: Thank you to P2P Members Katherine Carol and Kelly Stahlman for being great advocates and sharing the pictures above of events they’ve attended!
Eres Mi Fuerza, Eres Mi Debilidad
… es en ese momento cuando comienza el viaje de preocupaciones, esperanzas y oraciones. Es ese momento que me redefinió como una persona. Yo ya no era la niña que creció en la guerra o la joven adulto que se mudó a un nuevo país con sólo $40 en el bolsillo o la mujer que destrozó todos los estereotipos en un campo dominado por hombres. Ya no tenía objetivos, ambiciones o planes personales… Es en ese momento que me convertí en madre, una madre de un niño con una discapacidad de por vida.
Recuerdo que mi corazón dolía hasta el último extremo. Un dolor que no se puede comparar con ningún otro… no es el de un adolescente con el corazón destrozado o de un niño decepcionado. El dolor era tan profundo que ponía todo a su alrededor en perspectiva. Canalizó cada pedacito de energía hacia Un Propósito, Un Pensamiento, Un Amor.
Aquí estoy 3 años más tarde preguntándose – ¿Cómo serás pequeña niña?
¿Va a estar determinado a hacer un impacto en este planeta? ¿Vas a amar profundamente y luchar fuertemente por lo que crees? ¿Va a ser justo y defender la justicia a cualquier precio? ¿Vas a compartir lo que tienes con los necesitados? ¿Vas a ser un hombro que los amigos pueden depender?
Te amo y te acepto ni importa qué… Siempre seré tu mamá; Cerca cuando quieras que esté y lejana como necesites que sea… Yo te vigilaré y haré todo lo que pueda para convertirte en una mujer fuerte, inteligente, independiente y capaz; Una mujer que conoce el bien del mal; Una mujer que va a salir de este planeta un lugar mejor que cuando entró… esto, niña, te lo prometo!
Nada cambia quién eres. Aprecio todo lo que haces o intentas hacer. Alrededor de ti mi corazón está tan satisfecho. Pero entonces… estoy sola y mis pensamientos comienzan a perseguir a través de lo imprevisto de este viaje ha sido y no puedo evitar esta emoción que se apoderan de…
Eres mi fuerza… eres mi debilidad… ¿Y si no estoy cerca, vas a e
Nota del Editor: ¡AMAMOS la sincera carta de Carole a su hija! Si desea compartir sus pensamientos acerca de la crianza de su hijo o hija con una discapacidad con nuestro grupo, nos encantaría leerlos! Puede enviar una presentación de blog a: ccarrerap2p@abilityconnectioncolorado.org para Padres a Padres. Ayudamos con la edición, el formato y la búsqueda de imágenes para su escritura!
You Are My Strength…You Are My Weakness…
…it is at that moment when the journey of worries, hopes, and prayers started. It is that moment that redefined me as a person. I was no longer the child that grew up in war or the young adult that moved to a new country with just $40 in her pocket or the woman that shattered every stereotype in a male dominated field. I no longer had personal goals, ambitions, or plans… It is at that moment that I became a mother, the mother of a child with a lifelong disability.
I remember my heart aching to no end. A pain that can’t be compared to any other… it’s not the one of a heartbroken teenager or of a disappointed child. The pain was so deep that it put everything around it in perspective. It channeled every bit of energy towards One Purpose, One Thought, One Love.
Here I am 3 years later wondering – what are you going to be like little baby girl?
Are you going to be determined to make an impact on this planet? Are you going to love deeply and fight strongly for what you believe in? Are you going to be fair and stand for justice at any price? Are you going to share what you have with those in need? Are you going to be a shoulder friends can depend on?
I love you and accept you no matter what… I will always be your mama; close when you want me to be and distant as you need me to be… I will watch over you and do everything I can to raise you into a strong, smart, independent, and capable woman; a woman who knows right from wrong; a woman that will leave this planet a better place than when she entered it… that, baby girl, I promise you!
Nothing changes who you are. I appreciate every little bit you do or try to do.
Around you my heart is so fulfilled. But then… I’m alone and my thoughts start chasing through how unplanned this journey has been and I cannot help this rush of emotions that take over…
You are my strength… you are my weakness…What if I am not around, are you going to be okay??
For a beautiful photographic series on mothers and children with special needs, check out Defined By Our Hearts by Natalie McCain.
Editor’s Note: We LOVE Carole’s heartfelt letter to her daughter! If you would like to share your thoughts about parenting your son or daughter with a disability or special health care need with our group, we would love to read them! You can email a blog submission to: rwalbertp2p@abilityconnectioncolorado.org.
We help with editing, formatting and finding pictures for your writing!
Are You Connected? Join Parent to Parent of Colorado and we’ll connect you with other families of sons and daughters with disabilities and special health care needs. We provide information, emotional support and more!
Rodando de la Negación….Crianza con la Altitud
Negación. Es algo con lo que lucho. Como padre de un niño con necesidades especiales, siempre es un factor. Flujo y reflujo, entrando y saliendo como las aguas en el océano.
Una de mis negativas principales trató de conseguir una silla de ruedas para mi hijo Z. Z tiene parálisis cerebral (CP), un trastorno que afecta su tono muscular y movimiento. CP afecta a las personas de manera diferente, pero para Z, le afecta la cabeza a los pies, causando tono muscular rígido, haciendo movimientos básicos difíciles ya veces doloroso. También es dinámico, lo que significa que puede salir de su tono cuando está relajado.
Prefiero no mencionar la etiqueta porque él es una persona primero y más importante y es cómo debe ser conocido. Demasiado a menudo la gente pasa por alto este componente básico de la humanidad para centrarse en “lo que está mal con él”.
¿Nos presentamos a los “típicos”, seguidos de nuestras etiquetas o diagnósticos? ¿Qué es “incorrecto” con nosotros mismos? En mi cosmovisión, cada uno de nosotros tiene algún tipo de discapacidad; Algunos son simplemente más visibles que otros.
Pero yo divago.
Cuando Z dio vuelta 2 años, los terapeutas recomendaron conseguirle una silla de ruedas pediátrica. Seguimos ciegamente adelante pidiendo uno, sólo para descubrir que vino con un copago del seguro $ 1,500, que todo tuvo que ser pagado por adelantado.
Desde que éramos jóvenes, padres muy pobres, no iba a pasar. Mi primer pensamiento subconsciente debe haber sido agradecimiento; Agradecido de que mi negación pudiera durar un poco más.
La negación te alcanza. La verdad tiene una desagradable manera de golpearte, patearte y lanzar dagas a su corazón.
Fue mi miedo al preescolar, lo que me llevó a enfrentar mi negación una vez más. Z se acercaba rápidamente a los tres años de edad y comenzaría un programa preescolar en unas pocas semanas. Con su condición y habilidades actuales, era muy evidente que necesitaría una silla de ruedas para apropiado participación en la escuela. Me quedé con la opción de seguro, que no tenía dinero para, o…bueno, Craigslist, por supuesto.
Encontramos una silla de ruedas decente por una fracción del precio de copago. Era la silla vieja de una adolescente. Las barras de la base eran púrpura brillante y el nombre de la muchacha fue cosido en la parte posterior. Nos arrancó la costura, un especialista en equipos médicos se ajustó para el tamaño más pequeño de Z – mi esposa tomó mi cinta adhesiva de camuflaje y envuelto los bares de color púrpura que lo convierten en una silla más para un hombre.
Z tomó su paseo inaugural a la iglesia, y luego otra vez cuando recorrimos el preescolar. Sorprendentemente, me acostumbré más a la idea de Z en una silla de ruedas e incluso me sentí más a gusto que él estaría a la misma altura cuando se enfrenta a esos niños altos, bullicioso, y quisquilloso en el aula.
¿Fue mi negación de la silla de ruedas enfrentada y superada? Verlo sentarse derecho, rueda alrededor sin esfuerzo, y disfrutar del paseo me sacó de la negación en esta área.
Siendo por el momento.
La negación es graciosa, el flujo y reflujo, un día aquí, el día siguiente ido, solamente para volver en otra área. Es la vida del padre que crió a un niño con necesidades especiales.
No me opongo a la silla, lo odio, ni siento animosidad en contra de ella. Es simplemente negación. Siempre había esperado que fuera capaz de caminar; Un día milagroso, se pondría de pie y se defendería por sí mismo, aunque fuera un poco torpe.
Yo estaba en la negación del hecho de que alguna vez necesitaría una silla de ruedas.
En los años posteriores, Z está balanceando su tercera silla de ruedas manual y le encanta navegar independientemente en su silla de poder. Su silla de fuerza es, de lejos, su favorita; Lo llama su coche y le encanta fingir conducir a otros estados o salir a cenar. Es su crucero interno y externo donde puede disfrutar de algo de independencia.
Mientras él continúa trabajando con terapias tradicionales y alternativas, siempre tenemos la esperanza algún día, a través de la tecnología o de los avances médicos y científicos, Z podría ser capaz de caminar y mantenerse solo.
Un día. Tal vez. Ojalá.
Pero si el día no llega, he ido más allá de la negación a aceptar y abrazar la silla de ruedas.
La negación siempre encontrará una nueva área en la que albergar.
Mi esposa y yo durante años hemos estado negando el hecho de que necesitamos conseguir un vehículo totalmente accesible con ascensor de silla de ruedas y empate. Con el desarrollo de la independencia de Z en su silla de poder, ahora estamos enfrentando la verdad-necesitamos un vehículo en el que pueda entrar para poder llevar su silla de poder donde quiera que vayamos.
Si sólo pudiéramos negar que loco y costosos son esos.
Nota del Editor: ¿Sabía usted que la negación es una habilidad de supervivencia importante para hacer frente a los desafíos que puede enfrentar? Para más información sobre las etapas de la adaptación cuando usted tiene un niño con una discapacidad, visite http://www.parentcompanion.org/articulo/the-4-stages-of-adaptation-stage-1-surviving es un recurso que fue desarrollado en sociedad con Padre de Padre de Texas.
Vamos a mantener la conversación? ¿Cuál es su experiencia con el “reflujo y flujo” de la negación? Comparte tus ideas con Padre a Padre De Colorado
¿No eres miembro de P2P? Conéctese ccarrerap2p@abilityconnectioncolorado.org o Teléfono 877-472-7201.
Wheeling Out of Denial
Denial. It’s something I wrestle with. As a parent of a child with special needs, it’s always a factor. It ebbs and flows, coming in and going out like the tidal waters of the ocean.
One of my major denials dealt with getting a wheelchair for my son Z.
Z has cerebral palsy (CP), a disorder affecting his muscle tone and movement. CP affects people differently, but for Z, it affects him head to toe, causing stiff muscle tone, making basic movements difficult and sometimes painful. He is also dynamic, meaning he can break out of his tone when he’s relaxed.
I’d rather not mention the label because he’s a person first and foremost and it’s how he should be known. Too often people overlook this basic component of humanity to focus on “what’s wrong with him”.
Do we “typical” folk introduce ourselves followed by our labels or diagnoses? What’s “wrong” with ourselves? In my worldview, every one of us has some sort of disability; some are simply more visible than others.
But I digress.
When Z turned 2, therapists recommended getting him a pediatric wheelchair. We blindly went forward ordering one, only to discover it came with a $1,500 insurance copay, which all had to be paid up front.
Since we were young, broke parents, it wasn’t going to happen. My first subconscious thought must have been thankfulness; thankful my denial could set in for a little bit longer.
Denial catches up with you. Truth has a nasty way of punching you, kicking you and throwing daggers at your heart.
It was my fear of preschool, which led me to face my denial once again. Z was quickly approaching three-years-old and would start a preschool program in a few weeks. With his current condition and abilities, it was very apparent he would need a wheelchair for proper school participation. I was left with the insurance option, which we had no money for, or … well, Craigslist, of course.
We found a decent wheelchair for a fraction of the copay price. It was the old chair of a teenage girl. The base bars were bright purple and the girl’s name was stitched on the back. We ripped out the stitching, a medical equipment specialist got it adjusted for Z’s smaller size – my wife took my camo duct tape and wrapped the purple bars making it a manlier chair.
Z took his inaugural ride to church, then again when we toured the preschool. Surprisingly, I became more accustomed to the idea of Z in a wheelchair and even felt more at ease he’d be at the same height when facing those tall, rambunctious, touchy kids in the classroom.
Was my wheelchair denial faced and overcome? Seeing him sit up straight, wheel around effortlessly, and enjoy the ride wheeled me out of denial in this area.
For the time being.
Denial is funny, ebbing and flowing, one day here, next day gone, only to return in another area. It’s the life of the parent raising a child with special needs. I’m not opposed to the chair, hate it, or feel animosity against it. It’s simply denial. I’d always hoped he would eventually be able to walk; one miraculous day, he’d stand and fend for himself, even if a bit clumsy.
I was in denial of the fact he would ever need a wheelchair.
In the years since, Z is rocking his third manual wheelchair and loves cruising independently in his power chair. His power chair is by far his favorite; he calls it his car and loves pretending to drive to other states or out to dinner. It’s his in-house and outside cruiser where he can enjoy some independence.
While he continues working with traditional and alternative therapies, we always hold the hope someday, through technology or medical and scientific advancements, Z might be able to walk and stand by himself.
One day. Maybe. Hopefully.
But if the day doesn’t come, I’ve moved beyond denial to accepting and embracing the wheelchair.
Denial will always find a new area in which to harbor.
My wife and I for years have been denying the fact we need to get a fully accessible vehicle with wheelchair lift and tie downs. With Z’s developing independence in his power chair, we are now facing the truth—we need a vehicle he can get into so he can take his power chair everywhere we go.
If only we could deny how crazy expensive those are!
Editor’s Note: Did you know that denial is an important survival skill for coping with the challenges you may be facing? For more information on the stages of adaptation when you have a child with a disability, visit http://www.parentcompanion.org/article/the-4-stages-of-adaptation-stage-1-surviving This was developed in partnership with Parent to Parent of Texas.
Let’s keep the conversation going? What’s your experience with the “ebb and flow” of denial? Share your thoughts with us at: p2p-co@yahoogroups.com
Not a P2P Member? Join Us TODAY!
Mi Viaje de Crianza…Presunto Competencia!
Presunción de Competencia. Douglas Biklen y Jamie Burke definieron la “presumible competencia” como creer que un niño, independientemente de su discapacidad, es intelectualmente capaz y tiene las habilidades y la motivación para manifestarse como cualquier persona en la vida diaria.
¿Cómo ridículo suena a “presumir competencia” cuando estamos constantemente y abrumadoramente lidiando con los problemas de nuestro hijo, deficiencias, lagunas, retrasos, comparaciones con hermanos y hijos de la misma edad?
Basta con considerar por un momento la mirada en el mundo de una manera diferente. Nuestro pequeño será con adultos típicos algún día, y no sería genial si pudieran sentirse tan competente como sea posible en el mundo real?
Sobre la base de mis esfuerzos para ayudar a mi hijo Kyle a ser tan incluido y respetado como se convirtió en un adulto, estas fueron 6 estrategias que trató, y logró con él:
1) Garantizar una vida escolar inclusiva. Él fue a eventos deportivos de la escuela secundaria y sociales y bailes escolares con compañeros que no tenían discapacidades.
2) Durante sus años de planificación de transición (a partir de los 14 años), trabajó en 2 trabajos comunitarios a tiempo parcial, que continuó trabajando después de los años escolares terminados a los 21 años.
3) Durante su último año de escuela, se conectó a una iglesia cerca de un grupo para solteros enviar de la escuela secundaria y disfrutó de esta beca infinitamente.
4) Durante su último año de escuela, estuvo involucrado en actividades comunitarias sociales y de recreación donde hizo amistades con personas que no eran discapacitadas.
5) Nos aseguró el mejor uso de la tecnología durante la escuela y después para su comunicación y para aficiones – como música, tarjetas y juegos de mesa, y la televisión.
6) Después de los años escolares, Kyle disfrutó especialmente asistiendo a las reuniones como uno mismo-abogado, presentándose orgulloso (vía su dispositivo de la comunicación) como ayudante de trabajo, pagado de la biblioteca.
Bastante impresionante para alguien con una etiqueta de discapacidad intelectual / desarrollo, y sin movimiento físico funcional, además de una pulgada o tan movimiento de la cabeza para controlar un interruptor.
PRESUME COMPETENCE… ¡y la competencia se puede lograr!
Para obtener más información sobre las ideas de Presumed Competence, consulte:
http://blog.brookespublishing.com/presuming-competence-what-it-is-what-it-looks-like/
Https://www.youtube.com/watch?v=66LrZuWtLjA
¡Continuemos la conversación! ¿Qué estás haciendo para “presumir competencia” con tu hijo o hija? ¿Cómo se comunica esto a otros miembros de la familia, amigos y profesionales? ¡Comparte tus ideas con nosotros! Comentario sobre Padre a Padre de Colorado en Facebook.
¿No es miembro de P2P? únase a nuestro grupo Padre a Padre Facebook! Email ccarrerap2p@abilityconnectioncolorado.org para más información!
My Parenting Journey….Presume Competence!
Presuming Competence. … Douglas Biklen and Jamie Burke define “presuming competence” as believing that a child, regardless of disability, is intellectually capable and has the skills and motivation to manifest just as anyone in daily life.
How ridiculous does it sound to “presume competence” when we are constantly and overwhelmingly dealing with our youngster’s problems, deficiencies, gaps, fall-behinds, comparisons to siblings and same-age kiddos?
Just consider for a moment looking at the world a different way. Our little ones will be with typical adults someday, and wouldn’t it be great if they could feel as competent as possible in the real world?
Based on my efforts to help my son Kyle to be included and respected as he became an adult, these were 6 strategies I tried, and achieved with him:
1) Ensure an inclusive school life. He went to high school sports events and school socials and dances with peers who had no disabilities.
2) During his transition planning years (beginning at 14), he worked in 2 part-time community jobs, which he continued to work at after school years ended at 21.
3) During his last year of school, he got connected to a nearby church Post High School Singles group, and enjoyed this fellowship infinitely.
4) During his last year of school, he was involved in community social and recreation activities where he made friends with folks who were not disability challenged.
5) We ensured the best use of technology during school and afterward for his communication and for hobbies – like music, cards and table games, and the TV.
6) After school years, Kyle especially enjoyed attending meetings as a self-advocate, proudly introducing himself (via his communication device) as a working, paid library assistant.
Pretty impressive for someone with an intellectual/developmental disability label, and no functional physical movement besides an inch or so head movement to control a switch.
PRESUME COMPETENCE…and competency can be achieved!
For more information about the ideas of Presuming Competence, check out:
http://blog.brookespublishing.com/presuming-competence-what-it-is-what-it-looks-like/
https://www.youtube.com/watch?v=66LrZuWtLjA
Let’s continue the conversation! What are you doing to “presume competence” with your son or daughter? How do you communicate this to other family members, friends, and professionals?
Share your ideas with us! Email p2p-co@yahoogroups.com
Not a P2P Member? Join us at http://tinyurl.com/ConnectP2P
¡Ola tu varita mágica!
Sucede una y otra vez, más recientemente cuando tomé a mis 3 nietas para ver la película, Cinderella-la Hada Madrina llega, agita su varita mágica y todo está “felizmente siempre después”. Si pudieras mover una varita mágica, ¿qué cambiarías para tu hijo o hija?
Mi interés en esta pregunta se inició durante una presentación de panel cuando se le pidió a un grupo de madres – todas las madres tienen un hijo con una discapacidad. Lo que me sorprendió fueron las respuestas – o la falta de una respuesta que yo hubiera esperado. Ni una madre dijo que iba a cambiar la discapacidad de su hijo. Estas madres hablaron de cambiar las expectativas de su hijo, cambiar los recursos disponibles, y cambiar la aceptación y la comprensión de los demás. Pero nadie quería cambiar la discapacidad de su hijo.
Entonces hice esta pregunta de nuestros miembros de la Junta Consultiva de Padres a Padres.
Aquí está algunas de sus respuestas:
Mientras reflexionaba sobre esta pregunta para mi hija, decidí si podía agitar una varita mágica, cambiaría la química del cerebro que hace que su viaje de la costa del rodillo de las emociones. Sólo puedo imaginar lo agotador que es ir de muy alto y frenético a irritable y enojada a severamente deprimido en cuestión de días o unas pocas semanas. También cambiaría la comprensión y aceptación de las personas que la rodean. Tener una “discapacidad invisible” era difícil para ella en toda la escuela porque los adultos a menudo asumían que ella estaba siendo “voluntariosa” o “falsa”.
Sin embargo, no cambiaría su creatividad, sus habilidades artísticas, su pensamiento “fuera de la caja” o su corazón afectuoso; No sabemos cuántas de estas características están vinculadas a un diagnóstico de trastorno bipolar. Hay ciertamente una serie de artistas famosos, músicos, innovadores que se cree que también tienen la química del cerebro alternativo. Por lo tanto, al final, podría concluir, como lo hicieron las mamás en el panel, que cambiar la condición mental de mi hija cambiaría la esencia de ella … y que yo no querría cambiar!
Vamos a continuar este diálogo! Al entrar en un nuevo año, ¿qué le gustaría cambiar (o no)? Me encantaría saber acerca de SU varita mágica.
Puede enviar sus ideas en Padre a Padre de Colorado en Facebook.
¿No es miembro de P2P? ¡Es gratis y fácil unirse a nosotros! Para unirse, envíe un correo electrónico a Chrissy Carrera a ccarrerap2p@abilityconnectioncolorado.org
Más información sobre las condiciones de salud mental y los recursos están disponibles en el sitio web de P2P en The Resource Storeroom (Almacén de recursos)! Busque recursos de salud mental y recursos específicos para discapacitados ¡Este es un gran lugar para encontrar miles de recursos recomendados por nuestros miembros!
Wave Your Magic Wand!
It happens over and over again, most recently when I took my 3 granddaughters to see the movie, Cinderella—the fairy Godmother arrives, waves her magic wand and everything is “happily ever after”. If you could wave a magic wand, what would you change for your son or daughter?
My interest in this question started during a panel presentation when it was asked to a group of moms—all of whom have a child with a disability. What surprised me were the responses – or the lack of a response I would have expected. Not one mom said she would change her child’s disability. These moms spoke of changing expectations for their child, changing the resources available, and changing acceptance and understanding by others. But no one wanted to change their child’s disability.
Then I asked this question of our Parent to Parent Advisory Board Members.
Here are some of their responses:
As I reflected on this question for my daughter, I decided if I could wave a magic wand, I would change the brain chemistry that causes her roller coast ride of emotions. I can only imagine how exhausting it is to go from extremely high and frenetic to irritable and angry to severely depressed in a matter of days or a few weeks. I would also change the understanding and acceptance of the people around her. Having an ‘invisible’ disability was difficult for her throughout school because adults often assumed she was being ‘willful’ or ‘faking it’.
However, I would not change her creativity, her artistic abilities, her ‘out of the box’ thinking or her caring heart; we don’t know how many of these characteristics are linked to a bi-polar disorder diagnosis. There are certainly a number of famous artists, musicians, innovators who are thought to also have alternate brain chemistry. So, in the end, I might conclude, like the moms on the panel did, that changing my daughter’s mental health condition would change the essence of her…and that I would not want to change!
Let’s continue this dialog! As we enter a new year, I am gifting you with a Magic Wand……what would you like to change? You can email your thoughts to our Online Parent Support Group at P2P-CO@yahoogroups.com
Not a P2P Member? It’s free and easy to join us!
More information about mental health conditions and resources is available on the P2P website in The Resource Storeroom! Look for Mental Health Resources and Specific Disability Resources This is a great place to find thousands of resources recommended by our members!
Mi hijo, Logan, nació en Flagstaff, Arizona en 2003 y nuestras vidas parecían ser las mismas que todas las nuevas familias. Alrededor de 6 meses de edad durante una visita de bien bebé, el médico comenzó a preocuparse de que Logan no estaba formando nuevas palabras como “ma” o “da”. Nos aseguraron que estaba bien y los niños a menudo tienen retrasos del habla. A los nueve meses, Logan fue diagnosticada con plagiocefalia (cabeza plana) y torcicolo (acortamiento del músculo del cuello). A lo largo de este período de tiempo, Logan no pudo cumplir con otros hitos. Se sentó a tiempo, pero nunca se arrastró. En su lugar, rodaría de un lugar a otro. Estábamos conscientes, pero sin preocuparnos por cosas como él que no lloraba ni dormía mientras pasaba la aspiradora. Sólo pensamos que era “un buen bebé”. Cuando Logan no pudo caminar alrededor de 12 meses, nuestra terapia física cambió a aprender a caminar. Además, iniciamos la intervención temprana para trabajar con un terapeuta del habla para facilitar la conversación.
Logan comenzó a caminar a los 17 meses y nos aseguraron una vez más que esto era el límite más externo de “normal”. Sin embargo, todavía no estaba hablando. Podía balbucear y decir una palabra, “mamá”. Nos enviaron al hospital de niños de Phoenix para un ABR sedado (respuesta auditiva del tronco encefálico). ¡El doctor salió y me dijo que Logan era sordo! Tuvo una pérdida auditiva bilateral entre 55-60 db. Me quedé impactado. No por el diagnóstico, pero porque todo el mundo parecía que te lo pierdas !! Nos tranquilizaron que estaba bien, sólo retrasado. ¿Cómo podría haber cambiado tanto las cosas después de una prueba?
Durante este mismo tiempo, también había visto comportamientos “extravagantes” de Logan, como la celebración de su mano a la luz y el zumbido. También estaba fascinado con los ventiladores de techo. Todavía no jugaba con juguetes, pero prefería ollas y sartenes. Era diferente pero no tan inusual. En 2006, Logan comenzó el preescolar aquí en Colorado a la edad de 3 años, y dentro de dos meses se nos pidió permiso para probar Logan. No me dijeron qué para, pero más bien que era práctica estándar y todos los niños estaban siendo probados. En mi mente sabía que esto no era cierto. Todavía recuerdo vívidamente una conversación con mi hermana en su cocina cuando le dije: “Si le diagnostican autismo me pondrá triste. ¡Triste para todas las cosas que él faltará hacia fuera encendido, no podrá hacer! “En la rotura del invierno, fui llamado adentro y dado el diagnóstico del autismo también. Logan también fue diagnosticado con PICA (comiendo no alimentos) y aún no estaba ni siquiera cerca de ser el baño entrenado. Realmente no reaccioné. Ni siquiera recuerdo llorar. Estaba entumecido. Me sentí tan sola.
Los comportamientos de Logan también comenzaron a empeorar durante el semestre de primavera y no estaba aprendiendo el lenguaje de señas. Después de una acalorada discusión con la Escuela Estatal para Sordos, nos dijeron que “no podían satisfacer sus necesidades académicas” y que tendríamos que ir a la escuela pública. Se pasó de un programa a otro, escuela a escuela, con el distrito escolar haciendo poco para apoyarlo. Cada vez que se le requirió para pasar a otro programa, me dijeron: “No podemos satisfacer sus necesidades educativas.” Logan terminó asistiendo a 7 escuelas diferentes en 4 años! Estaba frustrado, enojado, triste, confundido. ¡Sólo quería que alguien ayudara a mi hijo!
Logan tuvo dificultades para adaptarse a otra escuela cuando nos mudamos a Denver. Sus comportamientos se intensificaron. Se golpeaba la cabeza en la pared, echaba cosas, derribaba los escritorios y golpeaba a otros estudiantes. Otro recuerdo vívido para mí es un día que vine a recogerlo. Su par lo sacó y sus dos brazos fueron cubiertos con vendajes. No tenía que preguntar quién lo había hecho a ella. Me miró y trató de tranquilizarme de que estaba bien. Lo único que puedo hacer es disculparme. Cuando entré en el coche, empecé a llorar. Lloré por ella y lloré por mí mismo. ¿Por qué era mi hijo el que nadie podía manejar?
No fue sólo en la escuela que sus comportamientos fueron empeorando. A menudo destruía muebles, arrojaba cosas hasta que se rompían o incluso atacaban a su hermana ya mí. En Noviembre de 2012, tuve que hacer lo que nunca pensé que haría, y Logan comenzó a medicación para quimicamente restringirlo.
A los 13 años, Logan es un chico diferente ahora. Ahora tiene una pérdida auditiva de 90-100 db por razones desconocidas. Ahora usará audífonos, pero me dicen que si pierde más audición, serán inútiles. Todas sus pruebas genéticas regresaron negativas. Los doctores todavía no tienen ninguna respuesta en cuanto a porqué él es la manera que él es. Pero, él es más viejo, madurado y es conductual estable la mayoría del tiempo. Todavía tengo muebles rotos y agujeros en mis paredes. No estoy mirando la vida a través de lentes color rosa. Pero, estamos felices. Tenemos grandes días, tenemos días horribles. A todos nos encanta viajar y hacerlo en el coche. ¡No he desafiado el aeropuerto todavía! Sólo puedo terminar diciendo que nuestras vidas han sido desafiantes. A veces se siente como que toma tanta fuerza para cumplir el día siguiente.
Me uní a Padre a Padre como una manera de conectarme con otros que eran “como yo”. Saber que otros se enfrentaron a desafíos similares me ayudó a lidiar con las circunstancias de mi propia vida. Tengo pocos apoyos naturales ya que mi familia ha sido en gran parte incapaz de manejarlo durante sus berrinches de comportamiento. Como madre soltera, me resulta difícil “cuidar de mí mismo” cuando no había un compañero para recoger la holgura.
Ser parte de la Junta Asesora de P2P me permite estar más involucrado en la comunidad y conocer a otros de diferentes maneras, tales como nuestros foros “Conoce a tus vecinos de la comunidad” que hemos hecho en una gran parte de Colorado. Me siento bendecido de ser parte de un grupo increíble de personas, incluyendo el personal y las familias de P2P.
Nota del editor: Cada año en diciembre, promovemos nuestra campaña de donaciones llamada “Abasteciendo el Viaje” A menudo hablamos de nuestros viajes de crianza, si estamos empezando con un nuevo diagnóstico o si somos veteranos que tratan con nuevas alegrías y desafíos. En P2P-CO creemos en el poder de conectar a los padres con otros padres que entienden. Sabemos que este tipo de apoyo de los padres está disponible y puede ser un salvavidas para muchas de nuestras familias. No sólo eso, sino que dura toda la vida… ahora tenemos miembros P2P que han sido parte de nuestro grupo durante casi 20 años!
USTED puede apoyar a los padres en su viaje de la crianza de un hijo o hija con una discapacidad o necesidades especiales de atención de salud y ayudar a combustible el viaje! ¡Una pequeña donación semanal, mensual o trimestral se suma a un apoyo continuo para más de 3800 familias en todo Colorado! Www.coloradogives.org/P2PCO
¿Quieres compartir tu viaje de crianza? Nos encantaría que estas historias sean una característica regular en nuestro blog, Crianza con Altitud. Para más detalles, envíenos un correo electrónico a infop2p@abilityconnectioncolorado.org
My Parenting Journey…the Power of Parent Support
My son Logan was born in Flagstaff, Arizona in 2003 and our lives seemed to be the same as all new families. Around 6 months old during a well-baby visit, the doctor started to become concerned Logan wasn’t forming new words like “ma” or “da”. We were assured this was fine and boys often have speech delays. At nine months, Logan was diagnosed with plagiocephaly (flat head) and torticollis (shortening of the neck muscle). Throughout this time period, Logan failed to meet other milestones. He sat up on time, but never crawled. He instead would roll from place to place. We were aware, but unconcerned about things like him not ever crying or sleeping while vacuuming. We just thought he was “a good baby”. When Logan failed to walk around 12 months, our physical therapy shifted to learning to walk. Additionally, we started Early Intervention to work with a speech therapist to facilitate talking.
Logan began walking at 17 months and we were once again assured this was the outer most limits of “normal”. However, he still wasn’t speaking. He could babble and say one word, “mom”. We were sent to Phoenix children’s hospital for a sedated ABR (auditory brainstem response). The doctor came out and told me Logan was deaf! He had bilateral hearing loss between 55-60 db. I was shocked. Not because of the diagnosis, but because everyone seemed to miss it!! They reassured us he was fine, just delayed. How could things have changed so much after one test?
During this same time, I had also seen ‘quirky’ behaviors from Logan such as holding his hand up to the light and humming. He was also fascinated with ceiling fans. He still didn’t play with toys but preferred pots and pans. It was different but not so unusual. In 2006, Logan began preschool here in Colorado at age 3, and within two months we were asked permission to test Logan. I weren’t told what for, but rather that it was standard practice and all the kids were being tested. In my mind I knew this wasn’t true. I can still vividly recall a conversation with my sister in her kitchen when I said, “If he’s diagnosed with autism it will make me sad. Sad for all the things he’ll miss out on, won’t be able to do!” By winter break, I was called in and given the diagnosis of autism too. Logan was also diagnosed with PICA (eating non-food items) and still wasn’t even close to being toilet trained. I didn’t really react. I don’t really even remember crying. I was numb. I felt so alone.
Logan’s behaviors also began to worsen during the spring semester and he wasn’t learning sign language. After a heated discussion with the State Deaf School, we were told they ‘could not meet his academic needs’ and we would need to go to public school. He was passed from one program to another, school to school, with the school district doing little to support him. Every time he was required to move to another program, I was told, “We cannot meet his educational needs.” Logan ended up attending 7 different schools in 4 years! I was frustrated, angry, sad, confused. I just wanted someone to help my son!
Logan had difficulty adjusting to yet another school when we moved to Denver. His behaviors intensified. He would bang his head on the wall, throw things, topple over desks and hit other students. Another vivid memory for me is a day I came to pick him up. His para brought him out and both her arms were covered with bandages. I didn’t have to ask who had done it to her. She looked at me and tried to reassure me she was ok. All I could do is apologize. When I got in the car I began to cry. I cried for her and I cried for myself. Why was my son the one no one could handle?
It wasn’t just at school that his behaviors were worsening. Logan often destroyed furniture, threw things until they broke or even attacked his sister and myself. In November 2012, I had to do what I never thought I’d do, and Logan started medication to chemically restrain him.
At age 13, Logan is a different boy now. He’s now at a 90-100 db hearing loss for unknown reasons. He will now wear hearing aids, but I’m told if he loses more hearing, they’ll be pointless. All his genetic testing came back negative. Doctors still have no answer as to why he is the way he is. But, he’s older, matured and is behaviorally stable the majority of the time. I still have broken furniture and holes in my walls. I’m not looking at life through rose colored glasses. But, we’re happy. We have great days, we have horrible days. We all love to travel and do so in the car. I haven’t braved the airport yet! I can only finish by saying, our lives have been challenging. Sometimes it feels like it takes so much strength to meet the next day.
I joined Parent to Parent as a way to connect with others who were “like me”. Knowing others faced similar challenges helped me cope with my own life circumstances. I have few natural supports since my family has largely been incapable of handling him during his behavioral tantrums. As a single parent, I find it difficult to “take care of myself” when there isn’t a partner to pick up the slack.
Being a part of the P2P Advisory Board allows me to be further involved in the community and meet others in different ways such as our “Get to know you community neighbors” forums we’ve done across a large part of Colorado. I feel blessed to be a part of such an amazing group of people, including the staff and families of P2P.
Editor’s Note: Every year in December, we promote our giving campaign called “Fueling the Journey” We often talk about our parenting journeys, whether we are just starting out with a new diagnosis or whether we are veterans dealing with new joys and challenges. At P2P-CO we believe in the power of connecting parents to other parents who understand. We know that this type of parent support at P2P is readily available (we are here 24/7/365!) and can be a lifeline for many of our families. Not only that, it lasts across the lifespan…we now have P2P members who have been a part of our group for nearly 20 years!
YOU can support parents on their journey of parenting a son or daughter with a disability or special health care need and help Fuel the Journey! A small weekly, monthly or quarterly donation adds up to ongoing support for over 3800 families across Colorado! www.coloradogives.org/P2PCO
Siete Ideas Para Romper el Estrés de Las Vacaciones Para Familias con Necesidades Especiales
Las hojas están girando, el clima es más fresco. Las decoraciones de vacaciones llenan los centros comerciales, los catálogos llenan mi buzón. La temporada de vacaciones está de nuevo. Recuerdos: galletas cocinando, luces de colores, música y reuniones de vacaciones.
La realidad golpea.
Cada viaje a la tienda se convierte en una batalla de las voluntades-decoraciones de vacaciones y juguetes nuevos. Mi hija adulta con Síndrome de Down quiere sentarse en el regazo de Santa. Yo digo que no. Los compradores de vacaciones me miran.
Un hijo, que tiene OCD, Se pone en línea para ver a Santa. En voz alta anuncia, “No es el REAL Santa, él está usando los pantalones de color equivocado.” ¡Los niños más pequeños en línea empiezan a llorar mientras me alejo!Recuerdo la víspera de Navidad en el hospital psiquiátrico del estado. No hay nada tan “alegre” como abrir sus regalos bajo el ojo vigilante y desaprobador de la enfermera Ratchet!
Nuestros hijos adultos comienzan el tirón-de-guerra sobre quién vendrá con quién a cual casa en qué día de fiesta! Imagínese esto: familia mixta de hijastros, ex cónyuges, abuelos y abuelas presentes y anteriores, tías y tíos, hijos adoptivos y adoptivos que traen consigo a padres biológicos, abuelos y tías de nacimiento, tíos y primos, agregan a amigos que se han convertido en cerca como familia y fiestas relacionadas con el empleo y el trabajo comunitario.
Usted termina con una pesadilla de programación en el curso de unas doce semanas! Agregue que muchos de sus niños tienen necesidades especiales y recuerdos “no tan afectuosos” de las fiestas. Y casi tres semanas sin escuela! “El bullicio” de las vacaciones se convierte en estrés a sus límites!
Podríamos fingir que las vacaciones no existen. Tome todo el dinero gastado en las vacaciones y tenga unas vacaciones agradables en una isla que no tenga tradiciones del día de fiesta… sin los niños o los parientes clasificados de curso! O podríamos cambiar nuestras pensamientos de vacaciones!
La autora Ann Svensen identifica cuándo necesita “rebotar un poco de estrés”: Si está irritable o pierde el sueño; Usted está perdiendo o engordando; Usted se siente tenso – dolores musculares o dolores de cabeza o simplemente se siente abrumado! Agregue que nuestros niños tienen tolerancia más baja del estrés también, requieren más cuidado, requieren más paciencia, parecen absorber nuestro propio estrés y usted tiene una ecuación para un día de fiesta no tan feliz.
Después de décadas de crianza de niños con una variedad de necesidades, he adaptado el consejo del artículo anterior y mis experiencias prácticas para ayudar a “estropear” su estrés de vacaciones:
Los factores de estrés que afectan a nuestros hijos “típicos” se pueden multiplicar por diez cuando se agrega la discapacidad a la mezcla.
Haz lo mejor que puedas y pon un gran círculo rojo alrededor de la semana en que los niños vuelven a la escuela.
A continuación, darse un regalo de fin de vacaciones – tomar una larga caminata, terminar el chocolate sobrante, ver una película de la tarde, pasar un día en pijama leyendo un buen libro, lo que te hace sentir en paz y descansado.
Tener una temporada de vacaciones verdaderamente feliz!
¿Cómo “rompes” el estrés de tus vacaciones? ¡Comparte tus pensamientos y ideas con nosotros en nuestro Grupo de Apoyo para Padres en Línea! Envíe sus ideas por correo electrónico a Padre a Padre de Colorado en Facebook.
¿No es un miembro de P2P? Puede unirse a nosotros completando nuestro formulario de inscripción en: www.p2p-co.org o dejar un mensaje a Chrissy Carrera en 877-472-7201. Es rápido y fácil y es gratis!
Para obtener más ideas sobre cómo hacer frente a las situaciones de vacaciones, visite: http://www.familyeducation.com/entertainment-activities/holiday-stress
Seven Holiday Stress Busting Ideas for Families with Special Needs
The leaves have turned, the weather’s cooler. Holiday decorations fill the shopping malls, catalogues fill my mailbox. The holiday season is upon us again. Fond memories: cookies baking, colored lights, music and holiday gatherings.
Reality hits.
Every trip to the store becomes a battle of the wills-holiday decorations and new toys. My adult daughter with Down syndrome wants to sit on Santa’s lap. I say no. Holiday shoppers glare at me.
One son, who has OCD, stands in line to see Santa. Loudly announces, “That’s not the REAL Santa, he’s wearing the wrong color pants.” Younger kids in line start to cry as I slink away!
I remember the Christmas Eve spent in the state psychiatric hospital. There is nothing so “merry” as opening your presents under the watchful and disapproving eye of Nurse Ratchet!
Our adult children begin the tug-of-war over who will come with whom to whose house on which holiday! Picture this: blended family of step-children, former spouses, present and former grandparents, aunts and uncles, foster and adopted children who bring with them birth parents, birth grandparents and birth aunts, uncles and cousins, add in friends who have become as close as family and parties related to employment and community work.
You end up with a scheduling nightmare over the course about twelve weeks! Add that many of your children have special needs and “not so fond” memories of the holidays. And almost three weeks of no school! “Hustle and bustle” of the holidays becomes stress to its limits!
We could pretend the holidays don’t exist. Take all the money spent on the holidays and have a nice vacation on an island that has no holiday traditions… without children or assorted relatives of course! Or we could shift our holiday thinking!
Author Ann Svensen identifies when you need to “bust some stress”: If you are irritable or losing sleep; you’re losing or gaining weight; you feel tense–muscle aches or headaches or you just feel overwhelmed! Add that our children have lower stress tolerance too, require more care, require more patience, seem to absorb our own stress and you have an equation for a not-so-happy holiday.
After decades parenting children with a variety of needs, I’ve adapted advice from the article above and my practical experiences to help “bust” your holiday stress:
Stressors that impact our “typical” children can be multiplied tenfold when you add disability to the mix.
Do the best you can and put a big red circle around the week the kids go back to school.
Then give yourself an end-of-the-holiday gift – take a long hike, finish up leftover chocolate, see an afternoon movie, spend a day in your pajamas reading a good book- whatever makes you feel at peace and rested.
Have a truly happy holiday season!
How do you “bust” your holiday stress? Share your thoughts and ideas with us on our Online Parent Support Group! Email your thoughts to: p2p-co@yahoogroups.com Not a P2P member? You can join us by completing our registration form at: www.p2p-co.org It’s quick and easy and it’s free!
For more ideas about coping with holiday situations, visit: http://www.familyeducation.com/entertainment-activities/holiday-stress
Redefiniendo la Maternidad… en una Temporada de Ausencia
Creo que fue hace unos seis meses…
Pero antes de seguir, tengo que decir esto! Si hay una cosa que realmente importa cuando usted está criando a un niño por su cuenta – es la validación.
Fue el día en que nuestro terapeuta en casa apareció, pero mi hija no. Fue muy parecido a cualquier otro día 2016. Hicimos nuestro mejor esfuerzo para continuar con la sesión, pero ¿dónde estaba mi hija?
Lo sostuve emocionalmente mientras el terapeuta estaba aquí, pero yo estaba asustado. Cuando el terapeuta se iba, ella dijo algo: “Tengo que felicitarte por lo ingenioso que has sido, incluso en las circunstancias más difíciles”.
¡Validación! Eso significaba mucho. Dije gracias, y luego lloré.
Hace tres meses….
Luego hubo el día en que decidí que era hora de volver a conectar con la pareja que adoptó los hermanos de nacimiento de mi hija y otros dos niños también. Para entonces había pasado varias semanas buscándola, después de un año de su salida de la escuela, desapareciendo de su cama o apenas no volviendo a casa cada vez que la respuesta era “no” a algo que habría sido una mala opción.
El dolor comienza de nuevo cada día.
No tengo que decirle a ninguno de ustedes que criar a un niño con necesidades de comportamiento es un desafío para cualquier padre. Cuando añades la capa de misterios genéticos, los adolescentes con preguntas difíciles y un universo digital complejo – la crianza de los hijos se convierte en algo completamente diferente.
Esa primera vez que su hijo desaparece puede hacer que cuestione todo lo que ha hecho. Por mucho que me gustaría hacer clic en “deshacer”, tengo que darme crédito por encontrar un mundo de mamás que han estado “allí” (y de regreso). ¡Validación!
La gente sigue diciéndome que no estoy solo, así que tal vez debería empezar a escuchar. Eventualmente, mi hija resurgió – lo que marcó el comienzo de una nueva realidad, un nuevo nivel de dolor y un nuevo conjunto de desafíos – dentro de un sistema que es profundamente defectuoso.
Hace unas pocas semanas…
Mi hija me dijo: “Mamá, siempre tienes que estar agradecido por lo que tienes”. Y le dije: “Es verdad”.
Tengo que decir que he hecho algunas cosas bien – hacer las preguntas correctas, instintivamente saber quién está dispuesto a compartir experiencias, decepciones… empatía.
Es por eso que Padre to Padre está aquí, por supuesto, sólo para mí en mi temporada de crisis. Y es por eso que estoy aquí para quien necesite lo que tenga que compartir.
Espero que sea la validación a medida que continuamos en nuestro viaje de crianza…. Juntos.
Nota del editor: En Padre to Padre of Colorado a menudo hablamos sobre el “Viaje de Crianza”. La visualidad de un viaje se ajusta a tantas razones… ¡está en marcha, a menudo desigual, a veces desolado y frecuentemente hermoso!
A lo largo del año, Padre a Padre de Colorado brinda apoyo a los padres de hijos y hijas con discapacidades y necesidades especiales de atención médica … incluyendo las necesidades de salud mental y conductual. Estamos disponibles 24/7 a través de nuestro Grupo de Apoyo para Padres en Línea. Ofrecemos una correspondencia individual con padres de Apoyo capacitados para familias que desean conectar uno a uno. El personal de Padres a Padres también responde a correos electrónicos y llamadas de información y referencias para la comunidad en general, y participa en ferias de recursos comunitarios, políticas y esfuerzos legislativos y promoción para mejorar las vidas de las familias.
En esta Temporada de Gratitud y Dando … por favor apoye a los Padres a Padres para continuar nuestro importante trabajo en esta comunidad. Es fácil programar una donación única o una donación periódica semanal, mensual o trimestral. ¡Lo que usted puede dar, estaremos agradecidos por su ayuda!
Redefining Motherhood….in a Season of Absence
I think it was about six months ago…
But before I go on, I have to say this! If there is one thing that really matters when you’re parenting a child on your own – it is validation.
It was the day our in-home therapist showed up, but my daughter did NOT. It was very much like any other 2016 day. We did our best to carry on some semblance of a session, but where was my child?
I held it together emotionally while the therapist was here, but I was panic-stricken. As the therapist was leaving, she said something like: ‘I have to commend you for how resourceful you have been, even under the most difficult circumstances.’
Validation! That meant a lot. I said thank you, and then I sobbed.
Three months ago….
There was the day when I decided it was time to reconnect with the couple who adopted my daughter’s birth siblings and two other children as well.
By then I had spent several weeks looking for her after a year of her leaving school, disappearing from her bed or just not coming home whenever the answer was no to something that would have been a bad choice.
The grief begins over again every single day.
On that day, listening to my words come out of another adoptive mother’s mouth for two hours was the single most validating moment of my Mommyhood. It’s not just me. The world of adoption comes with its own unique set of questions, fears and unknowns.
I don’t have to tell any of you that parenting a child with behavioral needs is a challenge for any parent.
When you add the layer of genetic mysteries, adolescents with tough questions and a complex digital universe – parenting becomes something else altogether.
That first time your child disappears can make you question everything you’ve ever done. As much as I’d like to click “undo,” I have to give myself credit for finding a world of Moms who have “been there” (and back). Validation!
People keep telling me I’m not alone so maybe I should start listening. Eventually, my daughter did resurface – which marked the beginning of a new reality, a new level of grief and a new set of challenges – within a system that is deeply flawed.
A few weeks ago…..
My daughter told me, “Mom, you always have to be grateful for what you have.” And I said, “That’s true.”
I have to say I’ve done a few things right – asking the right questions, instinctively knowing who’s willing to share experiences, disappointments…empathy.
That’s why Parent to Parent is here of course – just for me in my season of crisis. And it’s why I’m here for whomever needs whatever I have to share.
I hope it will be validating as we continue on our journey of parenting….together.
Editor’s note: At Parent to Parent of Colorado we often talk about the “Journey of Parenting”. The visual of a journey fits for so many reasons….it’s on-going, often bumpy, sometimes desolate, frequently beautiful. This journey may lead us in directions that we never thought of…but also to new adventures we would never have experienced otherwise. It’s also a journey that never ends….whether our sons and daughters are with us…or absent.
Throughout the year, Parent to Parent of Colorado provides support to parents of sons and daughters with disabilities and special health care needs…..including behavioral and mental health needs. We are available 24/7 through our Online Parent Support Group. We offer individual matching with trained Support Parents for families who would like to connect one-on-one. Parent to Parent staff also respond to emails and calls for information and referral for the greater community and participate in community resource fairs, policy and legislative efforts, and advocacy to improve the lives of families.
In this Season of Gratitude and Giving…please support Parent to Parent to continue our important work in this community. It’s easy to schedule a one-time donation or a recurring donation on a weekly, monthly or quarterly basis. Whatever you can give, we will be grateful for your support!
“La gratitud es la música del corazón, cuando sus cuerdas son barridas por la brisa de la bondad”
–Autor desconocido
Una Temporada para Dar y Tener Gratitud
Durante esta época del año, nuestros días se llenan tan rápidamente con la familia, el trabajo y las cosas personales que a menudo es un reto para encontrar sólo unos minutos para nosotros mismos. Cuidar a los miembros de nuestra familia por lo general tiene prioridad sobre el cuidado de nosotros mismos. En esta temporada de gratitud y donación, queremos animarle a que tome unos minutos para reflexionar sobre lo que está agradecido!
Estas son algunas cosas que nuestros miembros P2P son agradecidos por ….
De Lori Parker …
No tenemos familia en Colorado. Somos sólo nosotros: mi esposo, yo, y tres niños. Antes de que naciera nuestro hijo con discapacidades, era más fácil involucrarse con personas – vecinos, colegas, etc y regresar a Oklahoma o Louisiana para visitar a la familia. Después no tanto! Su cuidado requiere un intenso compromiso de tiempo que ha limitado mi capacidad de participar libremente en grupos o actividades. Aunque esto me ha enseñado a concentrarme (y muchas otras habilidades), sé que ha limitado mi capacidad de “crecer” una comunidad de amigos y vecinos. Al menos fuera de P2P! Estoy muy agradecido por Padre a Padre por ser mi comunidad “virtual” a través de los años.
De Shirley Swope …
En este momento en que el mundo parece tan triste y aterrador, queremos sentarnos y pensar en lo que estamos agradecidos. Me imagino que muchos de nosotros comenzará con la familia y los amigos, y las lecciones proporcionadas para nosotros allí. A veces nos cegamos por obstáculos cotidianos que nos bloquean a nosotros o nuestros hijos de obtener o ser todo lo que podemos ser. Diciendo esto, me alegro de que yo viva en un país que es relativamente seguro. Llego a defender nuestro sistema educativo para dar a los niños con discapacidades una mejor educación, agradecidos de que la suposición es que son permitidos en la escuela de forma gratuita, no lo normal para muchos países.
De Renee Walbert …
Estoy agradecido por la familia, que comparten nuestras alegrías y también nuestras penas. Agradecido por los amigos, que vienen junto a nosotros para ayudar a llevar la carga cuando se vuelve demasiado pesado. Agradecido por los pequeños placeres: caminar en las lluvias, el olor del pan, la nieve helada en los pinos, el sonido de un arroyo corriente.
Estoy agradecido por el P2P, encontrando apoyo emocional a través de las complejidades de los niños con discapacidades – desde pequeños hasta ahora adultos. Encuentro información importante de manera oportuna. Con la sabiduría de los padres que han caminado este viaje por delante de mí, encuentro preguntas que hacer y cosas para poner en marcha pasar de la edad escolar en el mundo adulto! Ellos tienen trabajos, hogares y amigos y viven con el apoyo adecuado en sus comunidades de elección! No podría haber hecho esto sin el apoyo de P2P!
¿De qué estas agradecido? Vamos a mantener la conversación en nuestro Padre a Padre de Colorado en Facebook.
¿No es un miembro? Es fácil y rápido unirse a nuestro grupo de padres de Colorado de hijos y hijas con discapacidades y necesidades especiales de atención médica. Por favor envíe un correo electrónico: ccarrerap2p@abilityconnectioncolorado.org
“Gratitude is the music of the heart, when its chords are swept by the breeze of kindness”
–Author Unknown
A Season of Gratitude and Giving
During this time of year, our days get filled up so quickly with family, work, and personal things that it is often a challenge to find just a few minutes for ourselves. Caring for our family members usually takes priority over caring for ourselves. In this season of gratitude and giving, we want to encourage you to take a few minutes to reflect on what you are thankful for!
Here are some things that our P2P Members are Thankful for….
From Lori Parker…
We have no family in Colorado. It’s just us: husband, myself and three boys. Before our son with disabilities was born, it was easier to get involved with people – neighbors, colleagues, etc and to trek back to Oklahoma or Louisiana to visit family. Afterwards not so much! His care requires an intense commitment of time that has limited my ability to freely join groups or activities. While this has taught me focus (and many other skills), I know that it has limited my ability to “grow” a community of friends and neighbors. At least outside of P2P! I am so thankful for Parent to Parent for being my “virtual” community through the years.
From Shirley Swope…
At this time when the world seems so sad and scary, we want to sit back and think of what we are thankful for. I would imagine that many of us will start with family and friends, and the lessons provided for us there.
Sometimes we get blinded by everyday obstacles that block us or our children from getting or being all that we can be. With that said, I am thankful that I get to live in a country that is relatively safe. I get to push our educational system to give children with disabilities a better education, grateful that the assumption is that they are ALLOWED in school for free, not the normal thing for many countries.
From Renee Walbert…
I am thankful for family, who share our joys and also our sorrows. Thankful for friends, who come along beside us to help carry the load when it becomes too heavy. Thankful for little pleasures: walking in rain showers, the smell of baking bread, snow frosted on pine trees, the sound of a running stream.
I am thankful for P2P, finding emotional support through the complexities of parenting kids with disabilities–from tiny to now adults. I find important information in a timely manner. With wisdom from parents who’ve walked this journey ahead of me, I find questions to ask and things to put in place moving from school age into the adult world! They have jobs, homes and friends and live with appropriate supports in their communities of choice! Couldn’t have done this without the support of P2P!
Let’s keep the conversation going on our P2P Online Parent Support Group! Email your ideas to: p2p-co@yahoogroups.com
Not a member? It’s quick and easy to join our group of Colorado parents of sons and daughters with disabilities and special health care needs. You can find our registration form at: www.p2p-co.org
Sensory Friendly Events Provide Inclusion for ALL Families!
Last fall, my good friend Jill told me, in tears, how her family had attended Boulder’s Nutcracker every year – like so many families – as a beloved, multi-generational holiday tradition. But, she added, they stopped going when her child started showing signs of being different.
On a related note, I just opened an email from another mom friend, Mel, who asked if she should forgo the Nutcracker this year, because her daughter will most definitely try to climb on stage – she can’t help it, Mel writes, because like my own daughter, hers has autism.
My favorite story comes from a father, Tim, who bravely endured 18 years of “stink eye” because his daughter had to attend Barney concerts. You would think the purple dinosaur crowd would be used to noises and scant compliance!
So many people outside of our world still don’t realize how families like Jill’s and Mel’s and Tim’s– and mine – are shut out from experiencing the professional arts.
But today I bring some very uplifting news that we all need, because Boulder’s and the state of Colorado’s most important inclusive event is coming Nov. 23, at 2 p.m., when Boulder Ballet and The Boulder Philharmonic Orchestra open the doors to CU’s Macky Auditorium to let our families inside.
It’s being called The Gentle Nutcracker – a sensory friendly event that welcomes those who need to vocalize and perhaps switch seats, or even to leave the auditorium and head to a sensory break room. Or twirl. Or elicit joy in the body and heart.
This past summer, Boulder Ballet, The Boulder Philharmonic Orchestra, Imagine!, Dayspring, the ACL Association for Community Living (ACL), as well as Macky tech staff and managers, and my own grassroots group, Brainsong: No Shushing Events, have been meeting and planning to offer Boulder and the state of Colorado its first professional inclusive Nutcracker ballet. We have additional training from Autism Society of Colorado. Benjamin Tarasewicz, who has autism, is our emcee!
The Boulder Philharmonic Orchestra, photo credit: Boulder Philharmonic Orchestra
This is huge!
I’ll repeat – the first professional Nutcracker with a full live, orchestra, full sets and costumes, that is welcoming to kids and families who are different but no less deserving. We follow Pittsburgh, Houston and Cincinnati, who already have a professional sensory friendly version of the world’s most ubiquitous ballet.
It’s happening because inclusion is important to Wrenn Combs, Boulder Ballet’s Executive Director, and to Ana Claire, its artistic director who is equally driven to make the world a more welcoming place. The Boulder Philharmonic Orchestra’s forward-thinking Music Director Michael Butterman has made diverse audiences a priority this season, and so has the director of community engagement, Cynthia Sliker.
That we have an entire live, professional orchestra as part of this new Nutcracker tradition (which by the way makes it easier to control volume) is testimony to a cultural change afoot in Colorado.
From my experience, so many organizations want to join in this movement, they just don’t know how. One of the wisest women I know, Ailsa Wonnacott, Executive Director of the ACL, says, “it’s not rocket science. There just has to be a will to embrace humanity.”
I think we are finding humanity through the arts.
The Nutcracker is the perfect venue for cultural and social change, because after all, it is a universal story that ultimately teaches us how we can be our very best.
This holiday season, if Sarah or any child like her feels the need to stand on their toes and twirl, or make a joyful noise to join in Tchaikovsky’s magical score, no one is going to judge them; no one will shush them and their parents won’t have to explain for them being their perfect, exquisitely delightful quirky selves.
No Shushing Events with Boulder Ballet, June 2016; Photo Credit: Jill Marshall
To find out how to purchase tickets to the Gentle Nutcracker, and other sensory friendly events, please visit http://www.boulderphil.org/bpo-kids/sensory-friendly-concert
Please allow me to thank everyone who has donated to this cause, especially Carl and Rhonda Benton, Family Home Health’s Joe Stanton, and our planning committee, including Julie Hartman, Jamie and Kate Adams,, Rojana Savoye, Rudy Betancourt, and John Jungerberg. Boulder can be proud, and so can Lafayette with its support from EC2 (Empowerment Center of East County), the ACL (Association for Community Living) and Imagine’s Ania Young, who heads its Behavioral Health Services, and Caitlin Looney and Kate Hines of Dayspring, who trained volunteers.
Parent to Parent of Colorado supports the right of ALL citizens to vote! Find your local polling location or ballot drop off location here.
“The strongest oak tree of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.” – Napoleon Hill, author
Although it’s a cool analogy, I propose that for parents of children with disabilities, a Willow is a better tree. A Willow’s roots go deep, but they also spread out, searching for a little water to nourish them. They thrive best by a stream that will refresh them, but can go years without water, living with only the tiniest bit of moisture to sustain them.
When a strong wind comes, a mighty oak, standing alone, can be knocked to the ground. It’s a target for lightning- tearing a limb, leaving a wound vulnerable to infestation by bugs that can weaken it. It can catch on fire after a dry season or two.
Bend or Break?
A Willow bends in the wind, it twists, it may warp…but it will still stand. If struck by lightning, its moisture will sustain it and withstand fire. If it loses a limb, it produces sap to heal that spot. It will warp, it will be scarred, but it will live! The warps and twists make it interesting and lovely to look at.
When the sun shines on a Willow, yes, it grows higher, storing energy to sustain it in the hard times. But it also spreads out, sending out shoots to bring the next generation of Willows to life. The Willow weeps, yes, but under its graceful arms, many other life forms find shelter and it is in the twists of the limbs, in the flow and the grace of the weeping that we see the beauty of the tree.
So be encouraged! You may be battered, and feel like the trials you have gone through warp and twist you, but you are beautiful, like the willow. Full of grace – you will survive the storms.
Let’s continue the conversation! What is your reaction to the Oak versus Willow analogy? As a parent, what makes you feel more like a Willow or an Oak? We’d love to hear your thoughts and reactions on our Online Parent Support Group for Parent to Parent members. Email your ideas to: P2P-CO@yahoogroups.com
Not a member? It’s free and easy to join! Become A P2P Member
A Big Thank You to our Friends at Premier Healthcare Services for providing refreshments at our Metro Area “Getting to Know Your P2P Neighbor” gatherings! Thanks also to El Groupo Vida for refreshments provided in Glenwood Springs! And thank you to Ability Connection Colorado for the great eats at our Fort Collins meetings! Our P2P Advisory Members and Staff team enjoyed the opportunity to get to know you! Watch for announcements about our South/Southwest gatherings in Spring 2017!
P2P Members are invited to join us at 4 Regional gatherings in September to “Get to Know Your P2P Neighbor”. We’ll be meeting in Fort Collins, Glenwood Springs, Castle Rock and Jeffco/Denver West. Check our Online Parent Support Group for all the details! You can register at: http://tinyurl.com/P2PGet2KnowU
Your child is special and unique, and we want to nurture every bit of their unlimited potential in a safe, nurturing environment.
We offer:
Rigorous Learning
Free Nutritious Meals & Snacks
At Ability Connection Colorado (ACCO), we are so fortunate to have an incredible community of support – both internally and externally – including amazingly dedicated employees, volunteers, corporations, and foundations who care deeply and commit themselves to the mission of ACCO. On March 18, 2016, we held our bi-annual Citywide Meeting, where employees and community members gather to celebrate individual and organizational achievements, and recognize the many who make this work possible. We wanted to share these great recognitions with our larger community, since not everyone could attend due to the incredible snowfall on this day. (more…)
In 1947, the Kiwanis Club of Denver gifted $750.00 to Cerebral Palsy of Colorado (now Ability Connection Colorado) to establish a loan library to “aid parents in their search for more knowledge concerning Cerebral Palsy.” Seven decades later, this tradition continues with the South Denver Kiwanis Club. (more…)
Appears this month Business Den
With its waiting list of about 800 would-be students, Ability Connection Colorado needs more space.
The nonprofit is breaking ground on a fifth early childhood education center in Aurora next month. The waiting list for classroom seats is hovering at around 800 potential students, and Tiffani Lennon, VP of strategic development, said the expansion will allow Ability Connection to increase enrollment by 20 percent. (more…)
For all the latest news and happenings at Ability Connection Colorado, please check out our all new Fall 2015 Newsletter. (more…)
Originally published in The Dime Colorado. 
Rebecca is a 66-year-old woman with severe cerebral palsy. Her elderly parents both passed, leaving her dependent on institutions for her medical and personal care. A judge presiding over Rebecca’s case happened to be familiar with Guardianship Alliance of Colorado (a program of Ability Connection Colorado) and referred her to the program. (more…)
A little change can make a lot of sense.
Updated September 4, 2015
If you walk into any Circle K or Shell gas station in Colorado you will notice a donation canister on the counter benefiting the programs and services of Ability Connection Colorado (ACCO). Thanks to Circle K and Shell customers like you,
invaluable funds have been donated. (more…)
ACCO’s well attended Annual Meeting was held on March 13, 2015. Employees and guests gathered together to review the impacts and outcomes of fiscal year 2013-2014 and to recognize the outstanding accomplishments of coworkers, community agencies and partners through a special annual awards presentation. Additionally, Rick Allsbrook, Market Manager for Circle K Stores, (more…)
Pictured: Enercom President, Greg Barnett, comedian, Josh Blue and Ability Connection Colorado President and CEO, Judy Ham
A big “Thank You” to EnerCom, Inc. for generating charity commitments of more than $55,000 for Ability Connection Colorado through its annual charity golf tournament on Sunday, August 17 at the at the world-renowned Arrowhead Golf Club in Littleton, Colorado. The tournament served as the kickoff event for EnerCom’s The Oil and Gas Conference® 19, which drew 118 companies from all over the world, including many industry leaders. Golfers enjoyed the scenic venue at Arrowhead and a perfect day of weather. At the conclusion of the tournament, attendees gathered together for a little bonus entertainment, courtesy of one of Denver’s favorite funnymen, comedian, Josh Blue.
The annual charity tournament is the highest grossing event for ACCO. EnerCom first named ACCO beneficiary of the tournament in 2006. Since that time, the annual fundraiser has gifted more than $300,000 to help support the critical work Ability Connection does on behalf of Coloradans with disabilities and other challenges. The cause is near and dear to Enercom President Greg Barnett and wife, Tommey, as they have two nephews impacted by Cerebral Palsy.
Creative Options Center for Early Education was selected through a winning essay to receive playground equipment and curricula valued at $16,000 from Big Toys – aPlayCore Company. We submitted a brief essay on behalf of Creative Options on the importance of outdoor play for our children which was selected from over 200 entrants. The essays were reviewed by a panel of early childhood experts based on how the entrants (early childhood centers/organizations) planned on implementing new equipment and curricula to benefit their early childhood program. Creative Options will receive five Investigation Stations and a customized sign for our outdoor play environment, a full InvestiGator Club Inquiry-Based Learning System, and the new Outdoor Creative Plan and Learning Curriculum with standards-based playground activities. President/CEO, Judy Ham, states “We are so thrilled that our early childhood centers have been selected to receive this fantastic plan equipment and curricula. We know that social/emotional development of children is paramount – and so much of that happens through their play.” We hope to use the equipment at Creative Options Five. Special thanks to BigToys, InvestiGator Club and PlayCore for making all of this possible.
Held in February 7, 2015, at the Wynkoop Brewery, last year’s 21st installment of the annual 9-ball tournament was hosted by the Colorado Professional Firefighters, Denver Firefighters Local 858 and other local area firefighters and helped raise $90,000 for children with developmental needs through the Kyle E. fisher Memorial Fund at Ability Connection Colorado. Parents, Brian & Kelli Fisher, set up the memorial fund in honor of their son, Kyle, who was born with Cerebral Palsy. Proceeds from this uplifting event help ACCO provide scholarships for therapy and early education for children who otherwise would not receive these services. It is a fitting tribute and meaningful way to share with others the spirit, courage and inspirational joy for life and learning that Kyle embraced so strongly.
Presenting sponsor, Circle K, along with 35 other sponsors provided players for the event which made up most of the 60 teams that participated. In addition to billiards play, the event also featured a silent auction, local area sports celebrities and even a couple of Bronco cheerleaders. Ability Connection Colorado would like to extend our thanks to all of the sponsors, contributors, volunteers and players who participated and made the event such a big success.
To view pictures from the event, please visit our gallery page.
Originally published in the Summit Daily
Every year, Ned Archibald is given a blank check for one Summit County event.
It’s no wonder the Keystone Resort executive pastry chef’s desserts usually steal the show at the annual Wine in the Pines fundraiser, which will celebrate its 32nd year this Saturday, Oct. 24.
Hundreds of guests will be treated to an extravagant sensory experience as their eyes are drawn to sparkling evening gowns, their ears to an a cappella music group, their mouths to samples of wine and high-end foods and their noses to the centerpiece chocolate fountain.
“I call it the adult prom, Summit County adult prom,” founder and organizer Mike Smith said.
Plus, attendees can take pleasure in knowing their money is going to a good cause.
The event has always supported the Denver-based nonprofit Ability Connection Colorado, which will turn 70 next year. This year’s event proceeds will again go toward the organization’s employment programs.
The nonprofit’s Kelly Smith Employment Center is named for the youngest child of Wine in the Pines founders, Mike and Margaret Smith. The couple created the fundraiser in honor of Kelly, who was born with cerebral palsy, which affects muscle functions among other complications.
Mike Smith said the event has raised about $3 million over the decades through ticket sales and live and silent auctions. Organizers expect this year’s gala to net $100,000 or more for the nonprofit’s efforts.
WHAT’S NEW
This year, the Denver-based Auction Divas will be conducting the live auction, Smith said, which will include a hybrid electric vehicle.
Hudson Auto Source in Silverthorne donated a new 2014 Cadillac hybrid worth about $80,000, and FD Taylor Electric donated a garage conversion for the buyer to be able to plug in the electric vehicle at home.
Other standout auction items beyond the typical packages from local businesses include a trip for 10 people to Tuscany, a family vacation to Maui, an autographed Peyton Manning jersey, limited edition New Belgium Fat Tire bicycle and a couple dozen bottles of wine selected and signed by local celebrities.
This year’s theme is an All Star Celebration, and the event will feature the musical talents of the Denver-based 17th Avenue Allstars, the Allstars Dance Band and jazz singer Tina Naylor.
Kelly Smith, now 44, will be in attendance.
Her parents, longtime Dillon residents, started the event in the early 1980s when she was a child as a way to get involved and give back.
“We wanted to do something special with her and for her,” Mike Smith said.
PREPARE YOUR PALATE
Besides raising funds for Ability Connection Colorado, the family also wanted to promote wine in Summit County. The Smiths own Dillon Ridge Liquors, and Kelly’s older siblings are both in the wine business.
Mike Smith said he is working with almost every distributor in Colorado to provide 500 to 600 wines from around the world. Attendees also can choose from various liquors and beers from local breweries.
For food, guests will sample the finest dishes produced by the top-rated restaurants in Keystone.
“The chefs at Keystone, they try to outdo each other every year,” he said, “and then, to top it off, there’s Ned.”
Archibald said he and his seven-person staff are preparing 17 desserts including white chocolate hazelnut tartuffi, honey almond florentines and s’mores truffles. The team will spend nearly 600 hours creating the desserts and the event’s solid chocolate decorations.
Next to the chocolate fountain, he will place typical dipping items as well as three types of bacon: spicy sriracha red chili, a maple brown sugar ginger and apple wood smoked.
“Bacon is so flipping good on its own,” he said about giving in to the bacon-dessert craze a couple years ago. But, at a recent Vail Resorts company event, “everybody’s plate had chocolate with bacon on it, everybody’s!”
For more information, visit wineinthepines.org.
Written by: Alli Langley alangley@summitdaily.com
Hello Heather,
I cannot thank you enough, from the bottom of my heart, for how grateful we are.
You are a special person and to get such precise information to us so quick and feeling poorly.
We have a fight on our hands but will will fight and get the best treatment for _____.
Its people like you that make this world a great place to live in.
I will keep you updated and once this has been sorted I will be looking at some point in the future to
highlight infant scoliosis in the UK. Im not sure how but have a group of parents who are up for a bit
of positive media coverage also.
If you are ever in the UK you are welcome in our home.
Love to you and Liv x
Spotlight:
The Greatest Gift – Experimental scoliosis procedure gives toddler new hope.
Denver Rocky Mountain News Thursday, December 19, 2000
Ryan, our wonderful surprise baby, was born just 11 months after his bother. I had no complications during my pregnancy and Ryan was born to term. Ryan was always laid back and happy. Other than some reflux, he was very healthy. We did notice some differences between Ryan and his older brother. Ryan learned to sit up later than his brother and when he did, he had bad posture. He slouched, and he would plop down and lean back on his little Mickey Sofa. Sometimes he would just stop playing suddenly and lay down. I used to joke and say he was being lazy. Shortly after his 1st Birthday, I noticed the ribs on the right side of his back were sticking out. It looked like he had more muscle on that side of his back. I showed my husband and we both knew something was wrong.I got him in to see his pediatrician’s associate. He didn’t seem too concerned, but after I mentioned that Ryan’s older sister had to have surgery for her severe scoliosis at age 12, he told us to have x-rays taken. My husband took him to get his x-rays the next day at a local lab. My husband said that when they took the x-rays, Ryan was laying down; my husband held Ryan’s legs straight, while the tech pulled his arms above his head. This first x-Ray, measured Ryan’s curve at 17 degrees. That night my husband showed me the x-ray and told me that it Ryan has what’s called Infantile or Early Onset Scoliosis. I immediately started searching the internet for information. Luckily, I came across the Infantile Scoliosis Outreach program. I read all about Mehta casting and saw the success stories. I joined the Early Onset & Mehta Casting Facebook group and read through every post I could. All of the parents were so helpful. I learned that Ryan’s curve would be worse than 17 degrees since he was lying down and pulled straight for the first x-ray. I learned that he needed a Mehta as soon as possible. He was already 13 months and the best window of time to cast is between 1 and 2 years old. I had also read that parents in our area were taking their children to the Texas Scottish Rite Hospital for Children in Dallas. By the next morning, I was on the phone with Heather Hyatt Montoya. She confirmed that Ryan needed to go to the Texas Scottish Rite Hospital soon. Our pediatrician referred us to the hospital but we were told we would need to wait for 3 months until out initial appointment. With Heather’s guidance, I put together a packet and sent it to the hospital. I was thrilled when we got a call within the week and got an appointment the next month.
At Ryan’s first appointment, proper standing x-rays were taken. The standing x-ray revealed Ryan’s curve was actually 34 degrees and his RVAD was measured at 29. An RVAD over 20 generally means it will progress. We set up a casting date for October 24, 2013. I was nervous for the first casting but I knew my little guys needed this treatment. The best news was hearing that the doctor was able to get great Ryan’s curve down to 11 degrees in cast number 1. Eight months later and Ryan is now in cast #4. His curve is measuring at 8 degrees in cast. He will get his last cast on July 11, 2014.
Ryan is thriving in his cast. He can do everything another toddler his age can do except get wet. He loves playing with his brother, jumping on his trampoline, and going on walks. He is happy, healthy and his spine is growing straight. We are so blessed to have found Heather and ISOP when we did. We are sharing Ryan’s story to show that Mehta’s EDF casting works! There are still so many pediatricians who don’t screen for infantile scoliosis and so many specialists that don’t recommend casting. I have heard from countless families who were told to “wait and see” which lead to these children missing their window for early treatment. Mehta Casting should be the first option for children like Ryan.
Just wanted to provide an update and thank you for your help in getting us headed in the right direction. Without ISOP we would have had no alternative but to wait six months as the ortho doc requested and our baby would have had a long road ahead of him without Mehta casting. We were able to get an appointment with Dr. ____, last Wednesday, and he recommended casting!
We go back in two weeks for his first cast and MRI. Everyone was so nice there and we are just overwhelmed by how blessed and grateful we feel to have found ISOP, had immediate access to and advice from you, and the general encouragement that is given and shared amongst the FB group. You are really doing something special and amazing, Heather. If you hadn’t fought so hard to get this alternative established so many families would not be having the experiences they are.
I don’t know how to repay you for the role you have played in our son’s future. I know we are just starting this journey, that cast #1 may be the hardest, and there are days when I have no idea how we are going to cope and get through it, but I know that we will. We will keep you and the FB group posted as we continue our journey but I just wanted to check in and most of all share my gratitude.
Sincerely, Dana
The moment Maggie was born we knew something was wrong. When the doctors quickly whisk your child away and whisper in a corner, things are probably not going well. She had severe torticollis on the right side of her neck, causing her face and ear to swell. While in the hospital she had a quick x-ray, renal ultrasound and echocardiogram – fortunately her heart and liver were functioning properly, although the x-ray revealed a 30 degree spinal curve.
Maggie was a small, full-term baby and a poor eater (Breastfeeding did not work). Even on breast milk she developed reflux, and gained weight very slowly. It’s funny looking back on those early days as her nutrition was our paramount priority. We even took her to a GI doctor and worked tirelessly to get food into her. While still very small (5 years, 27 pounds), our focus has changed significantly.
Pretty quickly after her birth we were at the orthopedic clinic at our local Children’s Hospital. The doctors said that usually infantile scoliosis resolves by itself in a few months. After a year the curve was at 50 degrees – Maggie was becoming noticeably asymmetrical. Our appointment schedule shifted to every 2 months, with a chest x-ray to assess the curve. Six months later, the number was at 60 degrees – the diagnosis was progressive infantile scoliosis. It was time to start treatment…
Maggie’s curve is very high in the thoracic region of her spine – a very hard place to treat. In addition, an MRI revealed no rib or vertebrae deformities. Her spine just wanted to curve. The recommendation was to start with a Risser cast to shape the spine through pressure on the ribs. It’s hard to explain the horrible feeling that washes over you as a parent to know that you “opted-in” to a bulky, hot and itchy torso cast. We took the week prior to the casting as a perfect excuse to go to the beach. Seeing Maggie in the cast after the procedure brought me to tears. Waking up from anesthesia as an 18 month old kid now stuck in a cast that weighs one third of your body weight was more than I could handle. Maggie handled it way better than I did – she was active, mobile, and more or less unaffected. Her spine also, was unaffected. Each subsequent visit to children’s revealed a small increase to the curve: 62 degrees, 66, 72, 75, 79, 81, 82, then 90 degrees. Maggie was amazingly not showing any ill affects of her curve; no shortness of breath, fatigue, or trouble walking. Still, casting was not working…
Our doctors introduced us to VEPTR, an extendable titanium rod which is implanted in the back to manage a spinal curve while a child is growing. Sounded like the holy grail to us. “My daughter gets to get out of this cast? Swim? Take baths? And the results are very positive??” Sign us up. Maggie was around three and a half by this time with no relent to her ever-progressing curve. “There’s another option as well” our doctor told us, ‘It’s called halo traction”. Horrified, we could hardly even comprehend the desperation required to engaged in that medieval torture. “You seriously have to drill a halo into her head? Then hang her from a pulley in a walker or wheelchair she can’t get out of???” It literally could have been one of the worst things I could imagine. “But it’s easily reversible, and isn’t major surgery.” said our Doctor. We though about that for 10 minutes and concluded: VEPTR it is….
Maggie’s surgery was scheduled a couple days after her fourth birthday. We told her staying in the hospital would mean as many movies as she wanted – she was very excited. The surgery took three hours, three nerve-wracking hours, full of pacing, staring at each other, and mindlessly surfing the internet. She metabolized the anesthesia very quickly, and woke up fast and disoriented in the PICU, without us there. When we were finally allowed back, it took my wife a long time to calm Maggie down. Sleeping in hospitals is the absolute worst: two days in the PICU, and 4 more in the recovery room put a huge strain on my wife, who would not leave. Maggie’s condition was sub-par, she was unable to move her right arm (fingers moved though), her pain was high, and we were discharged with her hardly walking. A slow couple of weeks saw her going back to preschool an hour at a time, and some increased right arm movement. Then everything went bad, very bad…
Maggie suffered an episode at school that put her in a great deal of pain. She stopped moving her right arm, had a great deal of asymmetrical sweating (only the right side of her face) and was unable to do much but sit on the couch. We thought it was a strain or a pain spike and that a good night’s sleep would make it better. It didn’t, her condition worsened. She was lethargic, scared, and extremely timid – her face resonated pain. Our doctors did not know what could be causing it, guesses included a muscle tear (they had to cut through many layers of muscle on the right side to seat the VEPTR), an infection, or nerve damage. We continued to hope that rest and minor physical therapy would improve her condition, it didn’t. This went on for a month, until her sutures burst on her back – infection was now the known culprit. Surgery was scheduled to clean out her VEPTRs – it was performed the next day. She was put on antibiotics and we were sent home. Her condition slowly but steadily improved and we took her off the antibiotics. After about a month, constant monitoring of the wound did reveal that the new sutures started to pull apart again, we went back on the antibiotics. The wound healed as did Maggie’s condition – she regained full movement of her arm, along with her bubbly personality. She was however on 3 doses of antibiotics everyday, with no real exit strategy other then pulling out the rods.
After the initial VEPTR surgery, Maggie had three extension surgeries. They had no positive effect. Her spinal curve was over 95 degrees – I think the doctors must stop giving you exact numbers at this point, as they started telling us “Mid to high 90’s”. That desperation I talked about above was now on us in full force. We started getting our minds prepared for the ‘medieval torture devices’ – it was the only reversible option left. We formulated a plan: We took Maggie off the antibiotics, and would let the infection tell us that it was time for the rods to come out and the halo traction to go on. The infection didn’t come back… Great, now we get to choose when Maggie goes in the wheelchair. We tried one more extension surgery with no improvement and quickly scheduled the halo traction surgery….
Maggie would be getting her rods pulled out and a halo attached to her skull with eight screws. I did not cry when I saw her after she woke up from anesthesia. Her halo was big and bulky, with a large metal hook to attach to the wheelchair/walker’s(forthwith referred to as ‘hardware’) pulley system. Fortunately, there was no need for the PICU, and we went straight to the recovery room. Three more nights in the hospital, but Maggie was doing really well – both in terms of her pain and her tolerance for the hardware. Two days after surgery she was running down the halls of the hospital in her walker, jumping and doing tricks on the pulley system and making friends in the playroom. I’m lucky I recently upgraded my Subaru Impreza to a Ford F150, I don’t know what we would have done trying to move the hardware in anything but a pickup. Due to the fact that we currently have only a few weeks of experience with halo traction, I’ll end on this positive note: After one week of halo traction, and only two days of the final traction weight, Maggie’s curve has gone from over 100 degrees to 66…
You can see/grab some pictures from the Caringbridge site I set up for Maggie’s last two major surgeries: http://www.caringbridge.org/visit/maggiecondie/photos
Regards,
Ian
At the end of two months, Maggie’s curve is down to 50 degrees. It amazing for us to see some treatment actually have a positive effect. I feel horrible now that we even went through the VEPTR surgery, probably a regret I’ll have for the rest of my life. After the halo came off we had Maggie fitted for a new brace. One that has a neck brace along with a body brace – Maggie has been wearing that for about 23.5 hours per day. We’ll get another X-ray in a month to see how her spine looks, but the traction/bracing has given us new hope that we can keep her growing for a years to come.
At just five and a half months old, tiny little Nora was diagnosed with congenital scoliosis. We had noticed a curve in her spine; it was actually hard to see. You would have only noticed it if you were looking for it or if you were a parent, because that’s what parents do. After meeting with a pediatric orthopedic surgeon who specialized in scoliosis we learned she had two hemi vertebras in a row (malformed wedge shaped discs) in her thoracic region creating a curve of about 37 degrees at that time. We learned at that appointment that she would need surgery eventually but for now we would just monitor her through x-rays every three to four months.
It’s also not uncommon for children with congenital scoliosis to have other abnormalities, particularly with the spinal cord itself and heart and kidney abnormalities. This is because when the spine is developing in a fetus that development happens at the same time as the heart and kidneys. So Nora was scheduled for a full spine and spinal cord MRI, and echocardiogram and a kidney ultrasound at seven months old. Thankfully she had no other abnormalities present.
By time Nora was a year old her curve had progressed to 58 degrees and we were at a point where we had to sit down with her surgeon and figure out what to do next. Congenital Scoliosis is tricky.
Technically it is not a subset of early onset scoliosis subset but rather its own category. This is because the age of onset is prenatal and not between 0 and 5 which is how typical Early Onset is described. Congenital scoliosis is rare, occurring in only one of every 30,000 births. Spinal deformities in these patients have different treatments and prognoses based on the severity of deformation of the bone or bones, the pattern of deformity and whether the abnormal bones become more deformed as the child grows. There is limited research and studies regarding treatment of congenital scoliosis and therefore a lot of different opinions regarding treatment as well.
We wanted to pursue any options we had that were less invasive as surgery. It was our understanding that bracing very rarely works in congenital cases but metha/EDF casts can be successful. So when Nora was 14 months old we began the process of Mehta casting. We didn’t know if it would work, but our surgeon was hopeful. The goals of casting a child with congenital scoliosis are very different from those with idiopathic scoliosis. With idiopathic the goal is curve correction through a growth guided cast. In congenital scoliosis casting is used to buy valuable growth time before starting down the road of surgery. We aren’t looking for correction to happen; we are just hoping to slow the curve progression down that naturally happens during growth.
Casting children with congenital scoliosis is controversial and many pediatric orthopedic surgeons simply do not cast. Because congenital scoliosis is complex casting might not even be an option depending on the deformity and where. We were willing to try and see as the alternative was to just sit back and watch it progress and force into doing surgery sooner than anyone would want.
In the course of a year, we have been through five casts and we are happy to say her curve has held pretty steady and only worsened a degree or two. We are incredibly grateful we had a surgeon who was willing to take this approach and see if it would work. Nora is over two years old now and will soon be getting her sixth cast. We know surgery and/or surgeries are in her future and that’s another complicated road ahead of us but for now we are just gonna keep on casting as long as we can. It can work!
To learn more about congenital scoliosis or Nora’s journey, visit our blog at http://norasjourney-early-onset-congenital-scoliosis.com
We are from a small Midwest town in KS and before the arrival of my 3rd beautiful baby girl on new years eve, 2003, I confess I had never even heard of infantile scoliosis. Utterly uninformed and ill prepared, I had no inkling that within a years time, not only would I have become fluent in the medical terminology, but I would also learn through many slammed doors that this diagnosis can also carry with it a death sentence.
Eliana Jeanne was born at 30 weeks gestation due to my out of control eclampsia/HELLP syndrome and underlying issues. With a birth weight of 2 lbs. 12 oz, she had experienced growth restriction and was tiny for 30 weeks. In spite of the steroid injection for her lungs before birth, they were still seriously under developed and that coupled with a diagnosis of both annular pancreas requiring high risk duodenum resegmentation within 24 hours and an atrial septal defect in her heart, we weren’t given lots of reason to be hopeful. As I nearly simultaneaously met my daughter, I was trying to kiss the air around her hard enough to say goodbye should that be the last time I saw her beautiful tiny pink face. She was given a 15% chance of surviving surgery and coupled with the mounting complications of prematurity, we were given a grim prognosis. Complications of a noscommial strep B infection through her cvc line and a left germinal matrix brain hemorrhage were just two of the life threatening challenges she faced. Over the course of the next 3 long months in the NICU, she battled her way back from deaths door more than once and I became forever changed by the tenacity of spirit I witnessed daily in such a tiny fragile vessel.
Interestingly enough her spine was however…never an issue. Spina bifida oculta ruled out, although there was present evidence of a small sinus dermal tract to her tailbone. It was closed and her spine was perfect. Proven over and over while keeping a close eye upon her lungs. Her perfectly straight spine apparent, week after week in the the chest films taken to warn of pneumonia or scaring. Finally at 3 months old, we took our very tiny miracle, heart monitor and all, home. Thriving now, all things felt possible given enough time, and our lives fell into one of predictable routine. In the weeks preparing for her 6 mo. well baby check, we began growing increasingly concerned about a slightly perceptible shift in her chest wall in the roundness of our grasp…and the fact she always slumped to the left unless being held. After passing her check up with flying colors, her doctor assured me that I was seeing issues out of fear and that I needed to accept that she was healthy now. I politely stated that I would do so as soon as I saw a chest film, and they needed to accept I had no intention of leaving without one. The look on the man’s pale face after returning with her films is one ill never forget, as it would become a repeating vignette over the next 6 months. We were looking at a right thoracic curve with a 55 degree cobb angle, 30 degrees of kyphosis and severe rotation in a spine that had been perfectly straight a mere 3 months prior. In 30 yrs of practice he’d never seen it before, nor did he know how to help us. He did however promise to help us find someone who did, and with that began our Scoliosis journey.
Starting at the closest major city, MRI films in hand, we began ping ponging around in an ever expanding circle of specialists. By our 3rd apointment we were given a traction suit of velcro & straps to derotate her spine, but did nothing except made her uncomfortable. Wait and see they said. More hopeful for our 4th opinion, we forged ahead to that of a highly acclaimed surgeon in St. Louis when she was 10 months old. She barely weighed 11 lbs and by this point had progressed to a lethal 100 degrees with 60 of kyphosis. No congenital reasons, no malformations, hemi vertebrae or underlying diagnosis. Idiopathic and a complete mystery, yet deemed the most severe in its nature. All that was certain was that in conjunction with her underlying lung and heart complications from birth, we were running out of time, so quickly my mind balked at taking its measure. “Wait and see” had become the only option given us due to her size but it was clear now however with her rotation deemed relentless that waiting had never been a viable option. Out of desperation at home we were using a modified gait walker to literally hang her from just below the arms in ‘traction’ several times a day and I had begun doing my own research. It was when “bring her back in 6 months, lets wait and see” was repeated by this renound surgeon, that I first uttered the word casting to this Dr.
True, I admitted, I knew nothing about it, but I was certain what more time would bring and I was willing to try anything at this point. It was also then that his demeanor shifted to one decidedly more curt and his response left me deflated and hopeless. Surgical intervention was not possible due to her small size and severity. I needed to come to terms with it, take her home and keep her comfortable. “Enjoy her while I had her, and we would see where we were in 6 months”. I knew where my baby would be in six months and it made me reel with anger. In disbelief that he was actually just giving up, I again pressed the topic of casting. This time he was entirely dismissive, called it barbaric and questioned what sort of parent would put their child through that. When I stated there was no need for another appointment in 6 months because I deemed waiting & watching her die ‘barbaric’, and that we would be seeking another opinion, he abruptly stood to leave and with the parting statement, “another opinion will probably only confuse you, but of course that is your prerogative” …he disappeared from the room…and so did we, never to look back.
I want to be clear at this point that I am in no way disparaging the hospital in St. Louis, or even this Dr. Merely stating that in 2003, there was vast ignorance regarding the effectiveness of this treatment. In an ironic twist, I later saw this very surgeon that had given us no hope, years later in another panel of specialists there in SLC to learn. I wonder sometimes if it was Elianas updated presentation or her face that struck a chord to his memory…because on that day in the shriners lobby, he was silent but stared long and hard. You see, I had sent him a letter a couple years prior with a picture of Eliana at an age he said she’d never attain with a mere reminder that the option he’d dismissed as barbaric and old school, had managed to do what the surgical approach could not, and humbly asked him to keep an open mind. I was happy to see by his presence that maybe he did.
Far more compassion came from our next appointment in Denver, but sadly, no difference of opinion. 12 months old now and 110 degrees, sleep was fitful at best every night. The evening after our 5 th opinion, in my despair I stumbled across a parent support group online called I.S.O.P. The next morning after being granted access to this group…I finally gasped my first decent breath in months as I began pouring over the data in the links provided on the sight. Information about Dr. Min H. Mehta and her serial casting approach as a means to in some, cure, but in others, to buy precious time to grow. It was the first ray of hope afforded us since this had all started and I immersed myself in it into the early morning. Through the guidance and wisdom of the sites founder, Heather Hyatt Montoya, and her own incredible journey to help her daughter…the links to data published in Europe along with the support of parents on the site who helped narrow my focus, I settled upon the Shriners Hospital in Salt Lake City, Utah. Casting was available there and although retired, Dr. Min Mehta herself was traveling there for the very first Early Treatment Trial Project, showcasing her 40 years of data and bringing her style to the interested Dr.s here in the states. Eliana recieved her first cast at 13 mo old, in early stage cardiac failure from the pressure of her own tiny spine. Although her first cast was not a Mehta style e.d.f. cast (the first E.T.T.P was a couple months away) it saved her life and I attended that life changing conference with my once again thriving and growing baby girl.Every subsequent cast, starting with #2, through #33 which she is wearing now, nearly 10 years later, have been Mehta’s style growth guidance casts that have saved her life & become part of us now.
At 13 months, 115 degrees, 80 kyphosis and early stage cardiac failure… Eliana received her first cast with scaresly a second left to spare. We managed to harness one precious year of rapid infancy type growth before the rigidity of her curves made it become obvious that casting might not be a cure for us, but it has without a doubt become the one and only life saving tool with which we bought my daughter precious time to get to where she is now. Happy, healthy, beautiful, nearly 11 year old girl who is now big enough to embark upon the next step in her journey. We begin halo gravity traction in about 3 weeks in our hospital home away from home, and then on to growth rod surgery. A new approach brought to fruition within the last couple years, invented during this precious time the casts have purchased us.
I sobbed the first time I shook Dr. Mehta’s hand at that first ETTP, in awe of all that I’d been so lucky to find. It was a lifesaving miracle and I will forever owe Min Mehta’s research, our Doctors willingness and I.S.O.P’s assistance, an impossible debt. To that end is why I write this. I owe it to them and to every parent out there who has sat, blinking back tears at a computer screen desperate to find something that can at the very least offer a modicum of time. There is much more acceptance of this treatment now than the beginning of our journey thanks in large part to I.S.O.P. However as is true of all things in this age of information, there is much mis-information out there as well and sadly many children are still falling through the cracks. Its become increasingly clear to me how paramount getting out the accurate information is becoming.
I must state for the sake of that accuracy, and honesty, it was a very difficult thing to go through, that first cast. In spite of the fact it saved her life I still caught myself wondering as she cried nearly inconsolably upon first waking, “my God what have I done?” I thought it for hours as she barely ate and as I floundered at attempt upon attempt to get her diaper on, as she lie there already soaked in pee up her back within hours of what was meant to be a 3 month cast. Once the tears from the procedure subsided, the tears of frustration kicked in from it taking her newly acquired ability to crawl the first couple days, and now I cried openly with her. With each day however we both grew stronger and more accustom. She quickly learned to crawl again, and I how to care for the diapering and cast. She even learned to walk, all the while in a cast…and a small bike helmet for good measure, (we had hardwood floors). Each successive casting grew more manageable as we both learned what to expect…and the bounce back time has shortened after each and every cast since. She is now nearly 11 years old…and in her 33rd cast. Braces, although effective for some, don’t hold her rotation and at this point, stabilization is what we’re cultivating. Casting will not be a cure for my girl, but it has purchased us precious time to grow, and run and laugh and live a remarkably normal childhood. Thanks to casting, again like when I first brought her home, all things seem possible, given enough time.
Its why I feel compelled to say, don’t ever give up in pursuit of another opinion if your not being heard. Don’t believe every casting approach is the same, they are not. Pursue the data, the lions share of which came from the lifelong devotion and research of Dr. Min H. Mehta and has been made available through I.S.O.P. Don’t believe it if your told this approach is the old way or that its barbaric, it is not. Don’t accept “wait and see” in a curve you see with an increasing RVAD, the first couple of years when most flexible is time you cannot get back. We learned the hard way. Try to not get too caught up in the numbers. Its a marathon, not a sprint. More than that though, she’s absolutely thriving! Growing and attending school with her peers. Its true, impatience has lead me to other research just as I am certain we all have at some point…but it all leads to one inescapable truth. If I could leave you with one final thought it would be of that truth. Once instrumentation is introduced into the body the odds of complication are nearly 100%. If you think there is even the potential for this gentle, non invasive approach to help your young child…I implore you to empower yourself.
God bless
Carrie J. Halfhide
In the early 1940s, Dr. Harold Abramson, a New York pediatrician, pored over heartrending reports of babies who accidentally suffocated while they slept. As he reviewed case after case, he noticed that a vast majority of the deaths occurred when babies slept on their stomachs. After decades of additional research the federal government, the American Academy of Pediatrics and child advocacy groups formally launched the Back to Sleep campaign, instructing parents to place infants on their backs for sleep for the first year. There’s no question the Back to Sleep campaign has helped save lives. Since 1994 the rate of Sudden Infant Death Syndrome (SIDS) has declined by more than 50 percent. What this campaign has also effectively done is scare new parents so much that they don’t want to put their babies on their tummies ever.
More research suggests taking away “tummy time,” cuts off a pivotal avenue of development. The less time infants spend on their stomachs, the slower they generally are to acquire motor skills during their first year, which means the potential delay of simple feats like lifting their heads as well as more-complicated movements like rolling over, crawling, and pulling to stand. Doctors have hesitated to sound the alarm about this, since children usually walk shortly after their first birthday regardless of how much tummy time they’ve had. But a growing body of evidence now suggests that the timing of the motor-skill milestones that precede walking is crucial and can even factor into long-term health and cognitive ability. Pediatricians however, have had mixed reactions to this and have passed this off as inconsequential. Others, including the American Academy of Pediatrics, champion of the Back to Sleep campaign, have seen the head shapes and motor hang-ups as a harbinger of future problems and recommended supervised tummy time when a baby is awake.
Here’s where infantile scoliosis fits in. Parents are seeing the potential of death as outweighing the potential of delayed motor skills. What parents aren’t hearing are the increased risks of Infantile Scoliosis, the most challenging orthopedic condition in babies, from not having sufficient tummy time.
Prior to the 1980s the incidence of infantile scoliosis was much higher in Europe where infants were commonly placed on their backs to sleep. During this time babies in the US were traditionally placed on their stomachs to sleep and the incidence of infantile scoliosis was a rare phenomenon in North America accounting for less than .5% of all diagnosed cases of scoliosis. During the 1980s Europeans adopted the tummy sleeping position for children and the incidence of infantile scoliosis dropped to record low numbers.
Now take a look at Scotland before the 80s, where parents were routinely advised to place their infants to sleep on their backs, cases of infantile scoliosis accounted for 41% of all diagnosed scoliosis cases. After 1980 Scotland reversed their stance on back sleeping and the incidence of infantile scoliosis in Scotland dropped to 4%. At the same time there is research going as far back as 1966 that states one of the benefits of stomach sleeping was the prevention of scoliosis.
So what do parents do with this conflicting information? Putting an infant to sleep on his or her back is without a doubt the recommended sleep position for a baby’s first year of life. However tummy time is equally important and recommended for motor skill development and the prevention of scoliosis. The key is getting a sufficient amount of tummy time in. Parents should be encouraged to have their babies spend a healthy chunk of awake time on their tummies. This should begin soon after birth once the umbilical cord stump has fallen off. Several times a day so the child becomes used to it early on and likes it. There are lots of ways parents can practice tummy time, propping a baby on a nursing pillow while on the floor with them or even on a parent’s chest are great ways to get that added tummy time in and keeping everyone comfortable. Baby wearing is also greatly encouraged, as it too also helps promote physical development and decreases the risks of a baby developing infantile scoliosis. When parents choose a baby carrier it’s important to look for one that is comfortable to wear but is also ergonomic for baby.
Moriah was born by C-section at Via Christi St. Francis Hospital in Wichita, Kansas, on November 6, 1996. The next morning during her checkup, the doctor heard an abnormal heart sound and called in a pediatric cardiologist to consult. Moriah was diagnosed with Tetrology of Fallot, a congenital heart defect and she was immediately transferred to the NICU for observation. We were told that Moriah would need either a heart catheter or surgery within 1-3 months. When Moriah was 4 days old, we were able to take her home. Ten days later at a cardiology checkup, we were informed that she needed surgery as soon as possible, and she was admitted the next day at Wesley Medical Center. Surgeons placed a Blaylock-Tussig shunt in her heart to re-direct blood flow to allow for better blood oxygenation. This procedure bought Moriah some time to gain weight and grow before a repair surgery.
On the same day of her first surgery, Moriah contracted Necrotizingenterocolitus (NEC). The doctors called it “dying of the colon” and explained that her tissue was being attacked by infection. The presenting symptom was the mottling of the skin. There were three possible outcomes of the infection: no damage, minimal damage requiring surgery to remove the dead part and reconnect healthy tissue, or death. Moriah was treated in the PICU with three powerful antibiotics for three weeks. She spent another week on a regular floor and transitioned to discharge. I stayed with her throughout the ordeal, learning as much as I could about her medical care. This included running a Kangaroo pump and inserting putting a nasal gastric tube (NG tube), which I was afraid to do because I didn’t want to hurt her. The nurse simply asked me “Do you want her to eat?” I replied, “yes”. She said, “Then put the tube down.” That was exactly the no-nonsense approach I needed to make me do it. Little did I know I would be learning how to change a tracheostomy tube in a few short years.
Moriah’s father, Travis, visited our baby daily before and after work. He whispered in her ear that she was doing a good job and encouraged her to keep fighting. He nicknamed her “mighty Mo” after the Mighty Missouri. Our family, friends, and church supplied nearly every meal for us during her month-long hospitilization. We are so thankful that there was no long-term damage done by the NEC. Moriah was fed through an NG tube for six months while we worked with therapists to maintain bottle feeding and eventually take in solid foods. Moriah also had physical and occupational therapy for a year to build up muscle tone lost from being immobile in the hospital, and to help her meet her developmental milestones.
During a cardiology checkup at about 3 months of age, chest x-rays showed a curve in Moriah’s spine. The cardiologist explained that congenital heart defects are often paired with another congential defect such as scoliosis. Moriah was referred to a local orthopedic doctor, who measured her thoracic curve at about 30 degrees. We were directed to wait and watch, with appointments every few months to see how the curve would progress. Travis inquired whether there were any type of cast or brace Moriah could wear to hinder the progression, and we were told there was not. The doctors were mainly focusing on resolving Moriah’s heart problems first, and did not want to restrict her chest cavity. We were not given any information on an RVAD measurement, or congential anomalies such as hemivertebrae.
At 7 months of age, Moriah had an MRI. Even then, we were not given any additional information or guidance beyond “wait and watch.” Years later, when we requested all of Moriah’s medical records, we found the report showed she did have at least two hemivertebrae at that time. By the time we had that knowledge, Moriah had undergone so much fusion that it was impossible to tell if the diagnosis had been correct. At the time of the initial diagnosis, my husband and I didn’t even know what questions to ask and we could find nothing on the internet to give us direction. We trusted the orthopedic doctor’s advice: we waited and watched Moriah’s scoliosis get progressively worse.
Moriah underwent her second open heart surgery to repair her Tetrology in April of 1998, at 17 months of age. This was our first surgery away from home and family. Thoracic surgeons at The Children’s Hospital (TCH) in Denver patched a hole to decrease the amount of mixing oxygenated and un-oxygenated blood, and they widened an artery. Moriah was sent home on a low dose of oxygen. We learned how to administer oxygen and monitor her oxygen saturation rate via a “sat” monitor.
By November of 1998, at two years of age, Moriah’s scoliosis measured 90 degrees with rotation and kyphosis. Our orthopedic doctor referred us to an orthopedic surgeon who measured Moriah’s curve at 115 degrees and recommended spinal fusion to slow the progression. We trusted this advice, and Moriah had her first fusion surgery on November 19th, at Via Christi St. Francis. She wore a TLSO brace 9 months following this surgery. We asked the surgeon whether the brace would correct the scoliosis at all before the fusion set. His response was no, the brace was only to protect the fusion as it set over the next 6 months to one year. In August of 1999, we again traveled to Denver for a heart catheter and to check on the results of the Tetrology repair surgery.
Shortly before May 2000, we learned that Moriah’s fusion had not stopped her curve and that it was “crank shafting.” Moriah underwent a second spinal fusion surgery that month. She was now fused anterior and posterior. After this surgery, Moriah experienced difficulty breathing and needed C-pap and oxygen. She stayed in the hospital a little longer than normal, but went home without oxygen. Moriah again wore a TLSO brace for 6 months. Her little brother Declan was born October of 2000.
During the winter of 2001, Moriah’s cardiologist informed us that a leaky valve in her heart had worsened and needed to be replaced. Moriah had become pale, lost energy, and her saturation levels were lower. Because performing the necessary operation during the winter would risk pneumonia, Moriah was scheduled for surgery in Denver in April. When we arrived at the hospital, her surgery was postponed due to poor lung function. While her valve did need to be replaced, it was her restricted lungs that were causing the low oxygen saturation numbers, according to pulmonologists and TCH. My husband and I had been told by both Moriah’s cardiologist and orthopedic surgeon that Moriah would have “restrictive lung disease.” They explained that this was due to her weakened heart function, and that she would become “winded” more easily. This was the first time we understood that there was a connection between Moriah’s scoliosis and her lung function. Previously, our focus had been on getting her through the numerous surgeries and having as normal a life as possible in between. While in Denver, Moriah had a heart catheter and a stent placed in one of her arteries. Doctors considered whether or not Moriah needed a tracheostomyat that time to help her breathe. At her heart surgeon’s request, we also consulted with a pediatricorthopedic surgeon. We discussed options to address Moriah’s scoliosis, which was threatening the repairs to her heart. Upon dismissal, we were advised to see a pulmonologist as soon as we got home. Ironically, the specialist we were referred to was in the same building, on the same floor, one hall down from Moriah’s cardiologist. Moriah began bi-pap therapy at night to help her exhale fully, expelling more carbon dioxide. Two sleep studies were done to check the bi-pap settings. Moriah also had carbon dioxide level checks periodically.
December 2001 Moriah had the leaky valve in her heart replaced at TCH. She was hospitalized only 8 days and went home on a low dose of oxygen. While we were in Denver this time, her heart surgeon again asked us to consult with the same pediatric orthopedic surgeon. X-rays showed that Moriah’s curve was again moving despite the fusions. The heart surgeon was concerned that Moriah’s progressing scoliosis would cause damage to the repairs done on her heart. He was also confident that, once recovered from the most recent surgery, Moriah’s heart would be strong enough to withstand a major spinal operation. We decided to have Moriah undergo halo traction in a wheelchair in an effort to reduce her curve and take pressure off her heart and lungs. We were told they expected up to a 50% curve reduction.
In May of 2002, surgeons in Denver broke apart some of Moriah’s previous fusions, removed some of her growth plates, and put in new fusion. A halo was applied to her head with 8 pins to distribute the traction weight. This proved to be her most painful surgery experience. Moriah required heavy pain medication to withstand the first two weeks of traction in the wheelchair. It took two weeks to wean Moriah from the ventilator this time. When, after 3 days, her CO2 levels went back to the 70s, we agreed to a tracheostomy surgery. Moriah was not doing well on bi-pap and passing out in her wheelchair traction. She did not have any energy to eat and the NG tube could not be removed.
All totaled, Moriah and I spent a month in Denver this visit. Travis flew home two days after the spinal surgery to resume working, so this was our first hospital stay apart. We had daily cell phone updates. Our son, Declan, was 18 months old at the time, and he stayed with us in Denver for 3 weeks at the Ronald McDonald House. My friend, my sister, and my aunt and young cousin each took week-long shifts, flying out to Denver to babysit Declan. When we knew Moriah was going to have the tracheostomy we decided to send Declan with my aunt and cousin. He was with them for 5 weeks, away from his parents and sister. Every trip to the Denver airport made me cry as others went home and we were still in the hospital. We saw Travis once more before transferring via medical flight to Wesley in Wichita, Kansas: he surprised us by arriving the day of the tracheostomy surgery. Moriah had told me before they took her in that she wished Daddy could be there because he helps her to be brave. When she woke up from an evening nap, there he was, smiling at her.
Moriah spent 5 weeks in the PICU at Wesley. Travis again visited every morning and after work. I slept at Moriah’s beside or in a nearby parent sleep room. Family and friends showered us with food and things to occupy our time. Teen volunteers decorated Moriah’s room like we were having a party, to cheer her up. Moriah recovered slowly as we increased the traction weight. Moriah only weighed 27 pounds, and had never been able to gain much weight on her own. We asked the pediatric intensivist for an appetite enhancing medication, and he recommended Megesterol (Megace), a medication often used for patients who experience appetite and weight loss due to AIDS and cancer. It is also used with individuals who have difficulty gaining weight due to multiple surgeries. Moriah was started on Megace, and resumed physical and occupational therapy to fight against muscle loss while in the wheelchair. She worked to be able to use the restroom out of traction with someone holding tension on the halo.
As a parent of a child with a trach, I learned to change and clean the trach tube. I also learned suctioning, manual chest percussion therapy (CPT), cleaning of the halo pin sites, and Moriah’s physical therapy routine. Before we left Denver, the physical therapists made a video of how to transfer Moriah from her bed to the wheelchair, how to hold tension on the halo while she walked out of traction, and how to hook up the traction line and weights, both in the bed and the wheelchair. I shared this video with the nurses and doctors at Wesley, as they had not worked with this type of traction before. Moriah was discharged from Wesley on a ventilator. Before we were allowed to take her home, in-home nursing staff was set up. My husband and I also had to demonstrate that we were capable of caring for Moriah on our own for a number of hours a day. This included understanding her vent settings, and what to do or who to call if complications arose. We turned one room of our house into a psuedo-hospital room. We isolated the wiring to its own breaker, had a medical bed delivered, set up organized space for supplies. We also had an oxygen concentrator, backup O2 for power outages, an external backup battery for the vent, a portable suction machine, and an O2 sat monitor. Moriah was also sent home with the NG tube, so we had the Kangaroo pump again. Our home nurses were used for pin-site care and trach-care, but were unfamiliar with Moriah’s traction. I had them watch the video and showed them what I had been taught.
The experience of having nurses in our home has been both comforting and stressful. We really have to be aware of having family time. The trach made it necessary for our home to be open to nurses, respiratory therapists, and their case managers. We also, for the first time, had to apply for Medicaid to cover Moriah’s increasing medical expenses. While it is great to have Medicaid pay for what insurance will not, the financial limits the system forced us to follow to retain coverage were unreasonable. Our family was used to being independent, and it was very hard to ask for help. No one, no matter their earnings, can afford the costs of the medical equipment rental and nursing. Yet, without those things in the home, Moriah would have spent her entire traction time in the hospital. Kid-Screen, a case management program offered in Kansas, fought several months to have Moriah placed on the TA (technology assisted) Waiver list. With this classification, Medicaid no longer scrutinized my husband’s wages, and we no longer feared losing our home while trying to earn under their limits.
Moriah was in halo wheelchair traction for a total of 7 months. X-rays were done monthly at Wichita Clinic with a local orthopedic doctor who emailed them to Moriah’s surgeon in Denver. During this time Moriah rode the wheelchair bus to kindergarten. Since the school did not have a full-time nurse to watch over Moriah, one of our home nurses attended school with her. The orthotist who made Moriah’s two previous TLSO braces furnished us with an “off the shelf” neck collar to wear on the bus. He enlarged an opening so her trach and ventilator tubing wouldn’t be disturbed. Moriah remained on the vent and eventually weaned to a Passy-Muir valve during the day. We put her T-bird vent, suction machine, O2 Sat machine, oxygen tank, and medical supply bag in a Radio Flyer wagon and pulled it behind the wheelchair everywhere Moriah went. By December, we were up to 25 lbs. of traction weight and Moriah’s scoliosis had reduced to approximately 60 degrees. She had gained 5 inches in height and 16 pounds in weight.
December 13, 2002, the halo was removed in the surgeon’s clinic in Denver. We had not been advised that this could turn into an overnight procedure involving anesthetic, and we had not planned for that in our trip. The surgeon said it would be alright to remove the halo in the clinic if Moriah could hold still enough. We had also not been told that traction weight should be removed as gradually as it was added, so Moriah went from 25 pounds of traction weight to nothing in a matter of minutes. She was so brave and still as they loosened each pin and pulled them out. When they told her it was safe to move, she lunged into my arms, crying. Although my husband and I asked, a brace was not recommended, nor was physical therapy prescribed. Moriah was in a great deal of pain without the traction support. We obtained orders for Lortab and physical therapy from our family doctor at home.
Just a few months later, in March 2003, we noticed that Moriah’s kyphosis looked worse. X-rays showed her curve had increased to 80 degrees. We contacted her surgeon, who explained that it was a “settling” effect from being out of the traction. We again asked for a brace to stabilize this “settling” and were told Moriah did not need one. By November 2003 Moriah’s scoliotic curve had reached 120 degrees with 120 degrees kyphosis and rotation.
About this time, we learned of the Vertical Expandable Titanium Rib Project (VEPTR) through the Infantile Scoliosis Outreach Program, and initiated contact with the University of Texas Health Sciences Center, in San Antonio, Texas, where the new procedure was being performed. In January of 2004, Moriah was rejected for the VEPTR implants because of the severity of her kyphosis.
February 2004 we took Moriah to Denver for a 3D CT scan. Both her scoliosis and kyphosis measured in excess of 120 degrees–almost immeasurable due to the rotation. The CT scan showed cracks in her fusion at T8 and T11. We later found documentation (referred to earlier) stating that Moriah had hemivertebrae at T9 and T10. After weighing options, we chose to repeat the halo traction process and to have as much of her previous fusion as possible removed. We were told that this should be her last halo in light of scar tissue, etc., and we wanted her spine to be as flexible as possible. The surgery could not be scheduled until May, and the surgeon did not feel her spine could get much worse in the meanwhile.
In May of 2004, Moriah underwent 9 hours of surgery. The surgeons were not able to release as much fusion as they did in the previous surgery. Nor did they have an optimistic prognosis for correction: possible only to 90 degrees instead of the 60 degrees we were hoping for. Also during this operation, her thoracic surgeon, who was assisting in the approach, noticed two portions of diseased lung tissue, the size of fifty-cent pieces, on the lower lobe of the left lung. He removed the diseased tissue as it was “an infection waiting to happen.” Because Moriah’s spine was so close to her ribs, they cut the ribs apart to gain access to the fusion, and then wired them back together. Thankfully, Moriah experienced no nerve loss in that area. Some of the complications Moriah experienced from this surgery included: pneumonia, UTI, bladder retention, and clonis in her ankles. They put her on a cuffed trach with an inner bubble that blocked all air leaks, preventing her from speaking for over a week. This took a toll on Moriah’s usually cheery disposition.
While at TCH, I initiated discussions with the orthopedic department about constructing a traction walker from a photograph of one used at the Shriners Hospital in Utah. TCH orthopedics were willing to try if a walker could be found, and if the funding were approved for the extra traction tubing needed. The walker would cost $600 and was not in the hospital’s budget. A great friend of ours posted an email on Parent to Parent of Colorado explaining Moriah’s need for a specific type of walker. Within 8 hours of the post, a parent was at the hospital donating the exact walker needed.
Moriah was once again transferred to Wesley via air ambulance to complete her recovery. The walker was not yet complete, and the wheelchair wouldn’t fit on the plane, so we had to leave Denver without them. We were able to get a pediatric wheelchair from a medical supply company. While at Wesley, we waited for her home ventilator and backup vent to be shipped from California. The model we were to use was new to the Midwest. Moriah continued physical therapy and her clonis improved. Two weeks later, when Moriah was discharged from Wesley June 7th, the walker was still being built in Denver. Moriah began to experience weakened leg muscles and her knee locked uncontrollably when she was out of traction, walking to the restroom. Through the efforts of Lynx Collaborative Care Network, the walker was delivered to our home on the July 4th weekend. Lynx paid the travel expenses and hotel so the person who built the walker could deliver it and show us how to use it properly. The walker was the best thing for Moriah. She became stronger, and the clonis, weak leg muscles, and knee locking stopped. Mentally and emotionally, Moriah benefited from being able to walk around most anywhere. She attended second grade with the walker, feeling independent, and more like the other kids. She was also able to participate in more adapted activities in P.E. and at recess.
In addition to their assistance with the walker, Lynx executed the overwhelming task of compiling Moriah’s medical documentation from all the offices and hospitals where she had received care. They also sent an informative and concise update on Moriah’s progress to San Antonio for reassessment for the VEPTR implants: Moriah’s scoliosis had reduced from 120 degrees to 65 degrees and her kyphosis had reduced from 120 degrees to 72 degrees, making her a more viable candidate for VEPTR. The day before Thanksgiving in 2004, we learned that Moriah had been accepted to receive the implants.
February 16, 2005, Moriah received two rib implants on her right side. The Family Medical Leave Act allowed Travis to take 3 weeks without pay from work, and we spent our tax refund to cover our bills so we could all be together in Texas. The implant surgery lasted 4 hours with no complications. Moriah’s recovery was quick due to great pain management, and no postoperative infections or complications. She was hospitalized only 2 weeks. All of the doctors, nurses, and respiratory and physical therapists were wonderful. We will return to San Antonio July 26th for Moriah’s second VEPTR implant surgery. She will have a single VEPTR placed on her left side. They will also move up the anchoring point of one or both of the VEPTRs on her right with the hope of better addressing her kyphosis.
We are so grateful to Doctors Campbell and Smith for inventing the VEPTR device. We would not be this far in Moriah’s treatment without the Infantile Scoliosis Outreach Program and Lynx Collaborative Care Network of Colorado. And we would not be sane without the unending support of our family, friends, church, home nurses, and community. Moriah is excited to be going on to third grade, and will have her same nurse there at her side until her trach can be taken out permanently.
There is too much as yet unknown about infantile scoliosis. It is unacceptable to “wait and watch” children like Moriah get worse. Research is a parent’s best tool in understanding scoliosis and working together with the doctors to chose the best treatment plan for their child. Moriah is a very strong girl and we have made a point of explaining to her, to the best of her understanding, every step taken to pursue her health. We teach her that while “medical stuff” involves a great part of her life, it is not her whole life. She can be and do anything she sets her mind to. It is our hope that, by reading Moriah’s story, you will learn from our mistakes, smile at Moriah’s progress, and be inspired to diligence in seeking the best care for your child. Make your list of regrets as short as possible.
Travis and Shellie Grant at shelliegrant@yahoo.com
Update on Moriah September 2006
Moriah is almost 10 now and enjoying 4th grade. In July 2005 she had one VEPTR hybrid placed on her left side. In February 2006 her surgeons re-seated the upper anchor on her right side to better address her kyphosis. They also switched out the lower anchor at that time converting it into a hybrid. Moriah now has one hybrid on each side and one cradle to cradle VEPTR on her outer right side. July 2006 was Moriah’s first expansion only surgery. It went better than we could have hoped. She was ready to go home the very next day. We have had zero complications with Moriah’s VEPTR implants. She will continue to receive expansions of her implants every six months until she is between the ages of 14-16.
Moriah’s lung health has improved dramatically. She is now off the ventilator completely. Moriah has her trach capped 15hrs a day and uses oxygen at night. Her pulmonologist is so pleased with the improvement that very soon Moriah will be capped 24 hrs a day. If she has a good winter, we have hope that the trach will come out in the late Spring or early Summer 2007. Routine bronchoscopies have documented the changes in Moriah’s airway. It is now strong, not floppy, and her bronchi openings are nearly symmetrical, all due to a decrease in Moriah’s scoliotic curve. She also recently had a complete heart exam during a catheterization that showed no signs of complications. We are so excited to be on the other side of all the struggles these last several years.
Update on Moriah April 2007
Moriah had her second, expansion only, surgery Tuesday, March 27th. Everything continues to go well with her VEPTR implants. On March 13th, Moriah regained freedom she hasn’t had in 5 years! Her trach being no longer necessary, Moriah took it out herself, under doctor’s supervision at the hospital. She was able to finish 4th grade without the supervision of a nurse going with her to school.
After 8 weeks the stoma had only partially closed. An ENT closed it for her surgically May 29th. After 10 years of struggle, Moriah is finally at a maintenance point with her scoliosis, heart, and lung issues. We will continue to vigilantly monitor her heart, lung and scoliosis as she grows. We could not have come this far without our ISOP family. This organization and the families involved are truly a blessing from God!
We were in Texas once again in August for expansions. Everything went perfectly. Moriah and I were invited to a Q & A session at The University of Texas Health Sciences Center at San Antonio. Dr. Simmons spoke before the new medical students in their Gross Anatomy class. Afterwards they asked Moriah and two other panelists questions. She did a great job! We put in a good word for ISOP! Moriah is in the 5th grade this year! She shocked us all by deciding to play the trumpet. What a great thing to get her involved with her classmates. Her doctors are happy about how it will improve her lungs! It is truly wonderful to see her so healthy. We’ve waited a long time for this and feel very blessed.
What is Halo Gravity Traction?
Halo gravity traction is a procedure used to reduce the degree of curvature in the spines of children with severe idiopathic or congenital scoliosis. Spinal traction is the gentle pulling of the soft tissue (joints and muscles) to help straighten the spine. A scoliotic curve allowed to reach high degrees of measurement may increase pressure on the lungs and heart. The result can be a decrease in life expectancy by up to twenty years.
Who Needs Halo Gravity Traction?
Halo gravity traction is needed by children with severe curves in their spine (80+degrees) who have not had success with other measures of correction, such as serial corrective plaster casting and serial bracing. Halo traction is also needed by those children with high curves who are not eligible for other measures of correction because of congenital defects in their spines. Many of these children are already experiencing stress to their heart and lung functions. Patients with severe infantile, juvenile and adolescent scoliosis and Scheuerman’s Kyphosis may be considered likely candidates for halo traction.
What is the Expected Outcome of Halo Gravity Traction?
Each child with severe infantile scoliosis will experience a unique outcome. Many factors, such as the stiffness or flexibility of the spine and whether congenital scoliosis with previous fusion is present, will affect the outcome. The goal of treatment is to safely bring the curve to the smallest possible degree and delay spinal fusion (if not already fused) until spine growth is close to finished, or maintain correction achieved via serial casting, bracing or instrumentation. Typically, a curve is reduced by about 50%-60%. The emphasis is placed on the child’s heart and lung health and not the number of degrees.
Application of Halo Gravity Traction
While the child is under general anesthesia, a horseshoe shaped metal bar is secured to the skull with 4-8 pins. These pins distribute the traction weight evenly. The number of pins used is in relation to the child’s weight. The halo will sit slightly above the eyebrows and reach back to the child’s ears. In some cases, it can go completely around the child’s head. The pins will hold the halo in place a short distance from the forehead. Once the halo is secured, it is ready to accept the traction weight. Traction is achieved by weights hung from a rope woven through a precise pulley system to the triangle and carabineer attached to the top of the halo.The traction gently pulls against the child’s body weight to straighten the spine.
The amount of traction weight used is determined by the orthopedic surgeon and depends on the child’s body weight (approximately 1/3 of the child’s weight).Traction weight starts light and increases slowly and deliberately until the maximum traction weight for the particular child is reached.
Halo in Place
The traction weight is decreased at the same deliberate pace, working towards the goal of halo removal, once correction is obtained.Following the placement of the halo, the child will remain in traction at all times. The apparatus
for traction is made to fit the bed. Maximum use of gravity is obtained by placing the bed in the Reverse Trendelenberg position, a downward slant of the bed where the child‘s head is elevated and feet are lowered. Newer beds have motorized controls to accomplish this. On older beds a stabilizing block can be constructed (see article) and resume physical activities. Maintaining strength while in the halo is very important so the child can return to normal activities when the halo is removed.
Your child’s orthopedic surgeon will determine whether your child will achieve more correction if wearing a cast during the halo procedure. Children who are scheduled to undergo a VEPTR implant surgery may not require plaster casting during the halo procedure, due to the necessity of maintaining healthy skin pre-surgery.
Possible Complications and Monitoring
Some possible complications from halo traction are: pain and weakness in the neck muscles, swallowing muscles and tongue, pain and weakness in the eyes, infections at the pin sites and neuromuscular complications. These are rare due to strict monitoring of the child’s neurological functions through simple tests of the eyes, facial muscles and movement in the arms, legs, toes, etc. Caregivers will be taught how to keep pin sites clean, and nursing staff will monitor the appearance of the skin around the pin sites daily. Check with your child’s orthopedic surgeon to see if physical therapy might benefit your child during this process. Any cause for concern should be discussed with your doctor immediately.
Pursuing Halo Traction Treatment
Each hospital equipped to provide halo traction treatment will have specific protocols for patient acceptance for the procedure. The following is a general outline of what you might expect:
Preparing the Family for the Halo Gravity Traction Procedure
A caregiver should plan to stay with the child at all times. Your child could be in the hospital for 8 -12 weeks, depending on the severity of the curve, your child’s overall health and strength, and the intended outcome for your child determined by you and your surgeon. Halo traction is meant to be a gradual process to limit overstressing your child’s body.
Your child will need help daily with personal care, toileting, eating, transferring in and out of bed, transferring from the wheelchair and walker, pin care and physical therapy. Be willing to learn how to care for your child. Communicate with doctors and nurses regarding your feelings about participating in your child’s care. Practice transferring your child before the halo application. Also practice holding the weights and traction to prevent injury.
Your child will also need emotional support and encouragement. Children will react to being away from home. They will react to having their movements changed and restricted. They will react to the pain felt during the first week of traction. Some children will not want to see themselves in a mirror or a photograph. How you respond to your child will largely shape his or her attitude toward the traction process. The first and last weeks of traction are typically the hardest. The caregiver staying at the hospital should prepare to support the child through these difficult times. The support of family and friends during this time helps tremendously. Friends and family can provide special meals, presents and cards to cheer the child, or maybe even sit with your child so the caregiver can take a break. Have someone outside of the situation that you can talk to about your feelings without upsetting your child.
Parent sleeping rooms, showering facilities and laundry facilities are available in many hospitals. Many hospitals are also near hotels that offer a medical rate and charitable housing, such as the Ronald McDonald House.
Plan to bring some of your child’s favorite things to decorate his/her room. A favorite blanket or stuffed animal, music CDs and movies are helpful also.
Preparing the Child for Halo Traction At Home
Seeing pictures beforehand of other children in halos may be helpful. If possible, talk with other families who have gone through the process. Encourage your child to ask questions and make sure those questions are answered. Make sure your child understands the necessity and purpose of the halo traction procedure. Emphasize the fact that the treatment is a short-term hindrance or frustration compared to the lifetime affect it will have on their health and the degree of their scoliosis.
In the Hospital
When Halo Traction is Finished
When your orthopedic surgeon feels the intended outcome has been reached or that maximum correction has been achieved, the halo (and, in some cases, the cast) will be removed. If your child will be braced, a mold of your child’s body will be taken to make a brace. There are many different kinds of braces with many specific purposes.
After the brace is made, your child will wear it for approximately two weeks, while the traction weights are systematically decreased. Frequent brace adjustments may be needed based on the complexity of the brace.
Your child may experience some aching and discomfort during the weight decrease and transition into the brace. A slight loss in correction may also occur.
After the halo is removed, your child’s neck muscles will be weak and need support. A soft, removable neck collar is suggested to support those muscles until they are regained through physical therapy.
Before being released from the hospital, your child must feel comfortable in the brace. (Caregivers must also feel confident about taking care of their child while in the brace.)
Your physician will tell you how many hours per day the brace is to be worn. It is important that those instructions be followed to maintain the correction achieved through halo traction. Your physician will also inform you of how often to come in for follow up visits to check the fit of the brace and how the curve is maintaining. New braces will be made as your child grows. A brace should be worn as long as it is successful in maintaining your child’s improved scoliotic curve.
Brace Care
Caregivers should be taught how to properly put the brace on and take it off. Make sure you feel comfortable doing this before leaving the hospital.
Note: This information is provided by the parents of children with infantile scoliosis to other parents, not by physicians. It is for general informational purposes only and cannot substitute for the advice of a medical professional. The information provided on this website should not be used for diagnosing or treating any medical condition. ISOP disclaims any responsibility whatsoever for the results or consequences of any attempt to use or adopt any of the information provided on this website. Nothing on the ISOP website should be construed as an attempt to provide a medical opinion or otherwise engage in the practice of medicine. Please consult your child’s physician for diagnosis, medical advice, and answers to your personal questions.
Rocco was born 10 days early in June 23, 2011. He had an exciting birth as he was born bum first (breech) with a room full of doctors and nurses that wanted to see his unusual birth. Thankfully he was healthy. We were over joyed to have our little boy and to bring him home to his big sister.
At his 8 week check up, I mentioned to his nurse practitioner that I thought Rocco’s right shoulder seemed higher then the other. She recommended that we see a physiotherapist. His physiotherapist then diagnosed Rocco with Tortacollis (a short neck muscle) that was causing his head to tilt to the one side and made it appear that his shoulder was higher. After weekly appointments and painful exercises we lengthened his neck muscle and his Tortacollis went away. He was 6 months old when his physiotherapist noticed that his back looked alittle crooked. He then sent us to a paediatrician. We have also seen 2 neurologist, a genetic specialist and a orthopaedic doctor. It was the doctor at McMaster Children’s Hospital in Hamilton, Ontario that gave me the shocking need of Scolocsis. I felt like the wind was knocked out of me. It was just me and my baby boy locked safely in his car seat and my mind was racing about what this meant for his future. I also had to give the diagnoses to my hubby. We then saw 3 different orthopaedic doctors, Rocco’s has had 5 X-rays and an MRI. He has consistently remained at about 55 degree curve and thankfully his MRI did not show any underlying condition.
We were told like so many other parents that we should wait and see and that Rocco would eventually may need to have surgery. We just could not settle with that fate for our boy.
After a lot of research and speaking to many wonderful parents on ISOP we decided to travel from Canada to Shriner’s Children’s Hospital in Erie Pennsylvania to begin his Mehta Casting. Rocco received his first cast on September 10, 2013. He was about COBB 58 RVAD 2. We are thrilled and so thankful to have found ISOP and Shriner’s. It was defiantly a difficult experience getting his first cast but the support from the families from ISOP and the staff at Shriner’s was invaluable. We felt like we had so much support that helped us get us through.
Rocco has settled with his new life in casts and has bounced back to being the happiest little guy. We have now had four casts and he is currently in a summer brace. We will continue casting this fall. His last numbers where out of cast 36.4 degree top curve and 31.3 degree bottom curve
When Alyssa was around a year old, my husband and I started noticing that her shoulders were a bit uneven, shoulder blade and rib cage protruded and her torso was slightly twisted. In the beginning we thought that maybe she was just “double jointed”. We mentioned this to the pediatrician at the time and her reply was ” she’ll outgrow it”. As we started noticing that it wasn’t getting any better and in fact seemed to be getting worse, we would attempt to mention it to the pediatrician and somehow the subject was avoided and immediately changed. It was until May 2012 ( 2 months before her 2nd birthday), that we as parents decided to seek a second opinion and took Alyssa to St. Christopher’s Hospital in Philadelphia. There we realized that she had scoliosis and the chances of her “outgrowing it” were slim to none. It was estimated that her spine was curved at approximately a 50 degree angle. As a parent, I felt my heart stop beating and an emptiness in my stomach. We were informed of the risks associated with scoliosis including but not limited to cardiac & pulmonary issues however at this point the orthopedic surgeon at St. Christopher’s wanted to “watch & wait” and see if and how it progressed. Needless to say without any treatment her spine continued to curve and our next MRI showed a curve of 67 degrees( January 2013). In the meantime, we went to visit with a cardiologist and determined that Alyssa had a small heart murmur but wasn’t anything too serious ( we would just watch and make sure it didn’t become compromised due to the curving spine). At this point, the orthopedic surgeon from St. Christopher’s referred us to Shriners in Philadelphia to meet the the doctors there. In April 2013, Alyssa had an MRI done which showed an 87 degree curve in her thoracic spine . The surgeon at Shriners introduced us to something called a “Mehta Cast” which is a plaster cast that Alyssa would be fitted for and would wear this cast for 10-12 weeks at a time with a small break in between. This was/is our best possible answer considering that surgery was out of the question due to her age & size.
Here she spent the night and we learned all about “Flossing & Petaling” the cast. As with any type of plaster type casts, this meant no more baths or pool time. Alyssa was scheduled to go back in to have the cast changed in early October when we were notified that a Chiari Malformation was detected on her MRI. We had her cast removed in early October and Alyssa went back to St. Christopher to meet with a neurologist. On October 24, 2013, Alyssa underwent a decompression surgery and was hospitalized for 4 days. She will need to follow up with the neurologist 6 weeks post op and then every 6 months from then on. Alyssa went back to Shriners in January 2014 to begin casting again and this xray showed a 94 degree curve out of the cast & 61 degree curve in the cast. Her next cast was applied on April 2014, showing a 96 degree curve. In July 2014, Alyssa went into Shriners to be fitted for her summer brace at which time an xray was taken. The X-ray at this time showed an improvement and she is down to 87* curved. We will go back to Shriners in September for another set of xrays and another cast will be applied. Due to the severity of Alyssa’s spine, growth rods and spinal fusion are not out of the question however we are delaying any surgeries and buying valuable growth time by using the casting method.
Antonio was born on December 6,1998. As soon as he was born, he didn’t look quite right so the doctors were rushed in and he was put in the NICU.
After days of testing he was finally clinically diagnosed wit Marfan’s syndrome. We were told that there would be heart, lens, joints, muscle and spinal complications to look out for in the near future.
Although, the diagnosis was wrong, he did end up getting scoliosis at 6 months of age. His over all diagnosis has not ever been found but we do know that it is some kind of connective tissue disorder. He has many symptoms of his condition but I will fill you in on the scoliosis journey. It has been the most difficult and longest, most painful part of his life and I include heart surgery as a far second.
Since Antonio has very loose joints and extremely low muscle tone and does not walk, his scoliosis progressed quickly and with a vengeance. At the time, 1999, we were told to brace him. Didn’t help. 6 months later his curve went from 30 degrees to 45 degrees. Then we were told that he would outgrow it….Three months later it was at 65 degrees.
__________________
Antonio is granted a wish by the Make A Wish Foundation to meet The Black Eyed Peas.
__________________
We changed doctors and he was put in a brace that he wore day and night with the hopes that the curve would hold and not get worse. He was braced until he was 7 years old when we decided that growth rods was our only choice. I fought to get him the VEPTR rods because they are a less invasive choice and his surgeon finally agreed However, he was put in halo traction first to get as much correction as we could before surgery. He stayed in halo traction for a whole year because we kept seeing improvement in the curve every time we went for an x-ray. He went to school with his halo traction and did everything while in traction. He was so comfortable because he didn’t have gravity holding him down and putting pressure on his spine. So then at eight years old the VEPTRs were implanted from his top rib to his pelvis.
Six months after the VEPTERs were implanted, his expansion surgery came next. Right after surgery we realized that his pelvis had been cracked by the pressure of the rods so one of the rods was removed. A few months later, his other rod migrated right through his rib and that one had to be removed as well. Antonio’s bones were much to soft to hold the rods and unfortunately we didn’t realize this until it was too late.
So, back to square one. He went back in a brace for several years and when he was 11 he went back in halo traction to prepare him for spinal fusion. At this point his curve was 106 degrees. He remained in halo traction for another year. I wanted to wait as long as possible so he could get as much growing time as he could. Again, Halo traction was his best friend and he was so incredibly comfortable. His curve went from 106 degrees to 45 degrees with traction.
At twelve years old he had his spinal fusion. It was a fourteen hour surgery . he spent the following 6 days on a ventilator and finally came off the vent and started the recovery process. Shortly after, he developed an infection and was put on a wound vac. A wound vac is where they fill the open wound with a special sponge and attach the sponge to a vacuum system that allows all the drainage to get sucked out of the wound and promote quicker healing. Every three days he was sent back to the O.R. where the sponge was taken out and replaced. It was a long horrible process that left him in the hospital all summer long.
Once we were done, we were sent home with a small wound that continued to drain for a whole year. He would not heal until the rods were removed from his spine but we needed time to allow his fusion to hold. After a year of keeping the wound issue at bay we went back to the O.R. to remove the rods. Again his infection returned and a new wound vac kept him the hospital for a whole other summer.
Once we finally closed up the wound and returned home he began to drain out of the same spot AGAIN!! We tried to heal it with help of antibiotics and wound care specialists but the following summer he was back in the O.R. to have another surgery to clean out the wound. Guess who came back? INFECTION…another wound vac and another summer in the hospital. Once that was finally over, the wound has been dry and closed and drama free.
We are still scared that the curve might come back because we had to remove the hardware that was keeping his spine in place However, I don’t see us going to the O.R anytime soon to put them back in.
Antonio’s scoliosis surgery has been a total nightmare. He was born too soon to benefit from the life saving Mehta Casting and it makes me so sad to think what if all these surgeries could have been avoided? At any rate, Antonio’s scoliosis journey is finally over (hopefully) but one thing about him is that he NEVER let any of this stuff get him down. He is an amazing boy with a great gift of positivity, patients and love.
Connie Viana
Order your copy of Scoliosis Quarterly at http://scoliosisquarterly.com/order.html
Mehta, M.D. FRCS., MH. Growth as a Corrective Force in the Early Treatment of Progressive Infantile Scoliosis. J Bone Joint Surg Br. 2005; 87-B: p.1237-47 (more…)
HS/EHS FY 2018 Annual Report
HS/EHS FY 2018 Annual Report in Spanish
