Civic Responsibility for All: Jury Duty

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!

How would you support your son or daughter if they are called to Jury Duty?  Share your ideas with us by emailing:





This is the second in a 3 part series on Civic Responsibility. Renee Walbert has recently retired from her position as a long time coordinator at Parent to Parent. She is a caregiver for her adult son, Aaron Walbert and is the mom of two other adult children and “Oma” of one. Renee continues to be actively involved in Parent to Parent of Colorado through our Online Parent Support Groups.

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

Thankful for the Quiet Moments

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.


Cassidy Dellemonache lives in Fort Collins with her partner in crime Gabe, their oldest twice exceptional son Leyton (10) and little one Anthony (19 mo). She regularly refers to her house as a circus tent and her family discusses their roles within the circus. She participates in various advocacy efforts in the community, is a member of the Parent 2 Parent staff team, and works with Gabe to run their family agency Tandem Employment Services – connecting businesses with employees, ensuring that all people can be employed & stay employed.


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:


What are YOU Thankful for?  Share your thoughts and ideas with us in our Online Parent Support Group by emailing:

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REV UP! It’s Time to Vote!

REV UP: Register, Educate, Vote, Use your Power

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:


This is the first in a 3 part series of blogs on Civic Responsibility written by our Parent to Parent staff. Watch for more great information coming soon! Share how you and your family participate in voting in our Online Parent Support Group by emailing:



What’s Your Plan? Part 5: It’s Tax Filing Season!

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—  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 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.

Kelly Wagoner is the Public Information Campaign Manager at The Piton Foundation which is part of Gary Community Investments—a private, operating foundation established in 1976 by Denver oilman Sam Gary. We are committed to improving the lives of Colorado’s low-income children and their families by increasing access to quality early childhood and youth development opportunities and fostering healthy family and community environments.

How are you planning for your son or daughter?  You can share your ideas with us at:  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.


What’s Your Plan? Part 4: Working At Home

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!

Vanessa Fardi is a team leader at NEUVOO. NEUVOO is a free job search aggregator that indexes jobs directly from companies’ career websites, placement agencies and job boards. You can reach Vanessa at

How are you planning for your son or daughter?  You can share your ideas with us at:  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



What’s Your Plan? Part 3: Working Together

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.

  • The first was to meet and get to know a little about each other.
  • The second was to go over our preferences and desires.
  • The final meeting was a review of all the documents.

To prepare for the second meeting, there are certain things you should consider:

  • If I become disabled and cannot make my own decisions, who will have Medical Power of Attorney over me?
  • After I pass, who will care for my daughter?
  • Who will be the executer of my living trust?
  • How will I fund the trust?

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. 

Pat Hart lives in Denver with his 16 year old daughter, Izzy. Izzy is a happy girl, who loves being around people. She is undiagnosed, with significant developmental disabilities. Pat was a chemical engineer before becoming a full time stay-at-home dad when Izzy was born. He also serves as Izzy’s CNA and in his free time, can usually be found out riding his bike. Pat is an active member of Parent to Parent and previously served on our P2P-CO Advisory Board.


How are you planning for your son or daughter?  You can share your ideas with us at:    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! 




What’s Your Plan? Part 2: Options for Planning

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.

Chris Brock, Probate Power’s Managing Attorney, understands firsthand the issues that come with living with a disability. A paraplegic since college, he now devotes his law practice to ensuring families with special needs carefully plan for the future. Please visit our website  for more information. Contact Chris at or (720) 279-8233 to schedule your FREE initial consultation.

How are you planning for your son or daughter?  You can share your ideas with us at:

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!  











What’s Your Plan? Part 1: Getting Started

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.


Betty Lehman is a long time member of Parent to Parent of Colorado. As the Executive Director of the Autism Society of Colorado, she led many legislative and policy initiatives to benefit children and adults diagnosed with autism in our state. Betty is now the owner of Lehman Disability Planning. You can reach her at


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:

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!

‘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?

  • Spa time: Go into the bathroom, close the door, and turn on the hot water to start steaming up the room. Light a candle if you want. Don’t bring your phone in, but put on music the old fashioned way so you’re not tempted to answer a call. Choose your favorite scrub or lotion or whatever pamper me product you want and generously use it on yourself! I make my own exfoliate with coconut oil, Kosher salt, and lavender.
  • Virtual trip: Did you know that many Libraries allow you to check out unlimited subscriptions to magazines electronically? Zinio is the app for iPhones. With 10 minutes, whether you like to ski, knit, cook, hike, horseback ride or sharp shoot, you can probably find a digital magazine and temporarily ‘vacation’ in your hobby.

Got 30 minutes?

  • Boil the water and brew a cuppa. Relax and sip. Sit down in a chair and read an actual book. Or day dream. Or meditate. Or….
  • Step outside, if someone is there to watch the kids or they’re in school, or you’re on your lunch break at work, and walk. Near trees or water if you can, but anywhere will do. Pay attention to your surroundings and look for beauty or unusual objects. Breathe deep, focus on your breath, your footsteps and the things you are observing. Some folks call this mindfulness, some call it walking meditation. I call it a 30 minute vacation.

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.

  • For me, I have taken one evening a week to sing with a choir. It’s time that I suppose you could say is volunteering since it’s a church choir and we sing most Sundays. But it’s a time that gives me great joy. I love to sing and it’s time that is completely separate from my working and parenting world.
  • Meeting a friend for lunch or coffee is fun. Choose wisely so that this time is truly a break…not more caregiving!
  • Spending time alone has the benefit of readjusting my internal barometer to face the next family or work challenge to come. Massage, nails done, hair, all nice things but most of the time the budget says no. But when the budget says yes? Then splurge on you this time.
  • Go to a museum, the zoo, an art gallery—all by yourself. Some libraries offer free passes to these venues, and if you are in the metro area, there are free days. Sometimes it’s just relaxing to go by myself to one of those places, and see the things that I want to see. Or go to your local library to look at their public art or check out a book on something you enjoy. Love Art but can’t actually leave or travel that far? You can do a virtual tour of many museums around the world online.
  • Plan a quiet elegant meal for yourself, or for you and your significant other. When my children were little, and very medically fragile, finding babysitters just didn’t happen very often. So periodically my husband and I would cook a regular meal for the kids and prep a fancy meal for ourselves for later. We would try to put the kids to bed early.  Then we’d cook together the fancy meal. We happen to like to cook together but you could get take out with the same effect. I put up a card table in whichever room was the neatest with the fewest toys (some years that was the living room, some years our bedroom) put on a table cloth, set it with china and a candle, add some music and voila–mini vacation.

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!


Renee Walbert is a mom to three adult children and an Oma to one beautiful granddaughter. She is also a deacon, community advocate, singer, policy guru, blogger, and a coordinator at Parent to Parent of Colorado. Renee coordinates the writers for our Parenting with Altitude blog and welcomes your submission of a blog for publication!


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



A Season of Gratitude and Thankfulness: Small Town Charm

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



Carrie Kleckler lives in northwest Colorado with her husband and three children. Her youngest son has Down syndrome and autism spectrum disorder. Carrie recently returned to teaching after 11 years as a stay-at-home mom, and is now working with preschoolers with special needs. She is the volunteer facilitator for the Northwest Colorado Chapter of the Rocky Mountain Down Syndrome Association, and she blogs about her parenting experiences at



All supports provided to families are free, however we rely on generous donors like YOU to keep our program going strong! Donate today at:




A Season of Gratitude and Thankfulness: Past, Present, Future

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


Renee Walbert is a mom of three adult children and an Oma to one beautiful granddaughter. She is a part of the past, present, and hopefully, future of Parent to Parent of Colorado. Renee writes frequently for Parenting with Altitude and coordinates the efforts of other authors. To submit your blog, contact her at:


A Season of Gratitude and Thankfulness: True Gratitude

A Season of Gratitude and Thankfulness:  True Gratitude

Our society seems to push gratitude in a context of comparison:

  • Thank you for my health (that I’m not sick like that person)
  • Thank you for my family (that I’m not alone like that person)
  • Thank you for my home (that I’m not like that homeless person)
  • Thank you for food to eat (that I’m not starving like those children in Africa)

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:

  • Thank you for seizures
  • Thank you for smiles
  • Thank you for cerebral palsy
  • Thank you for community
  • Thank you for sickness
  • Thank you for progress
  • Thank you for suffering
  • Thank you for strength

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

 Want to become a P2P-CO Member?  It’s free and easy to JOIN US!


Megan Bowser is a mom of three little ones (5, 3, and 1), Army wife, and former math teacher. Her introduction to parenting was marked by her son’s brain injury and subsequent cerebral palsy diagnosis which has lead her on a journey to help him reach his highest potential and offer support to other families walking a similar journey.


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!

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  


Want to become a P2P-CO Member?  It’s free and easy to JOIN US!

Carole Bakhos says, “The moment our daughter was born and rushed into the ICU, all my identities morphed into one… the mother of a sick child. Our journey with Yara helped us reach parts of ourselves we didn’t have to tap into before. We have experienced deep sorrows of the unknown future and intense happiness for every little accomplishment. Our perspectives have changed and none of the world’s troubles matter anymore. She is strong, happy, and healthy and she handles herself with such great self-confidence. We are so proud of everything she is and thankful that she has helped us become better people.” Carole, her husband, and daughter Yara, moved to Colorado last year and Carole immediately sought support from Parent to Parent of Colorado. Carole is a regular contributor to our Parenting with Altitude Blog, writing heartfelt letters to her daughter and now, to her husband.






A Season of Gratitude and Thankfulness: Counting my Blessings

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   

Are You Connected?  It’s free and easy to Join P2P-CO!


Grace Hunter is a stay at home mom. She has a degree in Elementary Education. Currently she works as Joshua’s paid family caregiver. She and her husband, who is an engineer for Lockheed Martin, have 4 grown children. Joshua, the youngest, has CP and requires full time care. She lives in Littleton, CO. Grace enjoys crocheting, reading historical novels, quilting, working on photo albums. The Hunter family enjoys traveling to National Parks, and camping in the Colorado Mountains whenever possible.



A Glimmer of Hope? Why “Minimum Progress” is No Longer Acceptable for our Children

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.

 When I first learned about the Endrew F. case, I thought, “I may as well be hearing my own life story.” Like Drew, my daughter Sarah was removed by her school from her fourth-grade general education classroom. Nobody told us, her parents, for two months. Like Drew, Sarah’s increasingly risky behaviors at school coincided with minimal or no progress on IEP goals. And just like Drew’s parents, my husband and I pulled our child from public school and put her into an autism program where she finally met her basic preschool goals and continued to make significant, meaningful progress. The heart of the Supreme Court case was about finding the right words for clear standards. IDEA, is supposed to ensure that schools provide access to a free, appropriate public education (FAPE) and related services that fit our kids’ unique needs. But lower courts that have sided with the school districts argue that “some” educational benefit is enough for our kids. The school district in this case argued that it only need to meet a de minimus or bare minimum standard. For Sarah, this would have meant slipping on her shoes was “good enough” progress in six years, if you add in two years of preschool.


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.

Susan Hoyt is the mother of Gracie and Jackson. Gracie, age 7, does not feel pain and is legally blind due to a rare disease called Posterior Column Ataxia with Retinitis Pigmentosa. Jackson, 9 ¾, is a wonderful little boy with no chronic medical conditions. Susan writes about her family’s journey on her blog, They live in Arvada with their two dogs and their cat.
Julie Marshall is an active member in Parent to Parent of Colorado and has written multiple blogs for Parenting with Altitude. She is the founder of Brainsong, a nonprofit with a mission to open doors to the professional arts experience to families living with different abilities.





Why Do I Love Fall? Creativity Abounds for Our Family!

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 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. 




Pat Hart lives in Denver with his daughter, Izzy. Izzy is a happy girl, who loves being around people. She lives with significant developmental disabilities, although her exact diagnosis is not clear. Pat was a chemical engineer before becoming a full time stay-at-home dad when Izzy was born. He also serves as Izzy’s CNA and in his free time, can usually be found out riding his bike. Pat is a retiring member of the Parent to Parent Advisory Board.





A Magical Time or Frozen Out? Taking Sarah to A Broadway-Bound Musical

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.

Julie Marshall is an active member in Parent to Parent of Colorado. She is the founder of Brainsong, a nonprofit with a mission to open doors to the professional arts experience to families living with different abilities. Learn more at:


Take a Breath…But Don’t Be Fooled! Part 2

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…

  1. Congratulations! We did it! Advocacy works! All of your calls, faxes, stories and social media posts made a difference!  We heard over and over that these efforts are critical.
  2. The threat to Medicaid and HCBS remains …we don’t know yet exactly what this will involve except that further attempts to repeal the ACA and/or change/cut the Medicaid program appear to be on the Congressional agenda.
  3. Stay connected!  We ALL need access to health care because that is what helps us and our loved ones live, work and go to school in our communities.  Even if we don’t utilize Medicaid services now, any one of our lives can change in a moment!  Our children grow up and may need new services as adults.  Be cautious of efforts to divide our community as divide and conquer is a long held political strategy.  There is another fight ahead of us…..

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.

The American Association for People with Disabilities (AAPD) recommends taking the following ACTIONS:

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  

Lisa Franklin is the current Lead Program Coordinator for Parent to Parent. She is a mom of three and a Nana of four. Renee Walbert is the Membership and Outreach Coordinator. She is a mom of three and Oma of one. Together with our Bilingual Coordinator, Chrissy Carrera, we love building inclusive communities, supporting families,  and taking effective action in the community…and enjoy a bit of celebration from time to time too!


My Parenting Journey: A Superlative Diagnosis

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   

 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!

Nathan resides in Arvada, CO with his wife Renee, his 9-year-old musically-gifted son Zak, his 4-year-old princess Madison, a rescue mutt named Ludwig and an outdoor cat called Shredder. The birth of Zak and his CP diagnosis changed their lives for the better, even though it was through many struggles and trials. Their family felt complete when they adopted Madison from medical foster care in early 2013. Nathan serves on the board of two organizations: Parent to Parent of Colorado and the Colorado Foundation for Conductive Education. In 2010, Nathan and Renee created a website to blog, post videos and connect with other families raising children with special needs. Nathan and Renee work from home, enjoy family time and love date nights at those instructed-paint-and-drink-wine-places.



Mi Viaje de Crianza: Bendición en Disfraz

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: 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 y



Carole Bakhos dice: “En el momento en que nuestra hija nació y se precipitó a la UCI, todas mis identidades se transformaron en una… la madre de una niña enferma. Nuestro viaje con Yara nos ayudó a alcanzar partes de nosotros mismos que no teníamos que aprovechar antes. Hemos experimentado profundas penas del futuro desconocido y intensa felicidad por cada pequeño logro. Nuestras perspectivas han cambiado y ninguno de los problemas del mundo importa más. Ella es fuerte, feliz y saludable y se maneja con tanta confianza en sí misma. Estamos muy orgullosos de todo lo que ella es y agradecidos de que ella nos ha ayudado a ser mejores personas. “Carole, su marido y su hija Yara, se mudaron a Colorado el año pasado y Carole inmediatamente buscó apoyo de Padre a Padre de Colorado. Carole saltó para convertirse en el nuevo miembro de nuestra Junta Consultiva P2P en Octubre de 2016.


Padre a Padre de Colorado es un grupo en Facebook para padres que quieren comunicarse en español sobre su viaje de hijos e hijas con discapacidades y necesidades especiales de cuidado de salud. Para unirse a nuestro grupo, llame al 877-472-7201 o envíe un correo electrónico a

My Parenting Journey: Blessing in Disguise

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:  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 and

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:

Carole Bakhos says, “The moment our daughter was born and rushed into the ICU, all my identities morphed into one… the mother of a sick child. Our journey with Yara helped us reach parts of ourselves we didn’t have to tap into before. We have experienced deep sorrows of the unknown future and intense happiness for every little accomplishment. Our perspectives have changed and none of the world’s troubles matter anymore. She is strong, happy, and healthy and she handles herself with such great self-confidence. We are so proud of everything she is and thankful that she has helped us become better people.” Carole, her husband, and daughter Yara, moved to Colorado last year and Carole immediately sought support from Parent to Parent of Colorado. Carole jumped in to become the newest member of our P2P Advisory Board in October 2016. Carole also provides leadership for the PPP2R5D research project.








The Power of Parent Support: Sharing Your Connection Stories!

The Power of Parent Support:   Sharing Your Connection Stories!

Nearly all parents who don’t have special needs kids can’t relate to our lives with the levels of stress we have. It’s nice to connect to others that really get it. All of the advocacy advice and info is awesome I would be lost without it. ~Father who participates in the P2P Online Parent Support Group

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.

Our Mission: 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.

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!

There are NO words truly to explain what happens within a parent when another parent comes along side them and knows. They just know. It is empowering no matter how challenging any particular situation or life in general with a special needs child is. “Me too” changed everything about my life. It gives hope. Alone parenting makes P2P support that much more important. ~Single Mom to an adopted child affected by fetal alcohol syndrome and autism
For me….the power of parent support is knowing that I’m not the only one that still needs support. If I need anything I can ask and someone will answer most of the time I just look in list serve and my answer is there. Also there’s always ideas of what to do out there for our kiddos or classes for us. ~Mom who connected with P2P at a resource fair

Seriously? There’s nothing better. When the doctors and therapists go home for the day it’s other parents who have my back and know what I’m dealing with day to day. ~Parent of a son with autism who was given P2P information from diagnostic team
Connecting with others from all different parts along the journey. This provides immense amount of wisdom, information, suggestions, referrals, ideas, and all around support of ‘I’ve been there. I know what you’re going through.’ ~Dad of child with cerebral palsy

We also asked how parents first connected to P2P-CO and received some terrific responses!

I believe it was one of the dozens of pamphlets handed to us at the hospital after we found out our son had Cerebral Palsy. It took us a while to go through everything, but we eventually signed up for the list serve to get connected and find resources. ~Dad who is active with our Online Parent Support Group
I was given resources from Early Intervention and then found you on line! ~Mom of a young child
I was at the big Summit at the Summit conference in Breckenridge (May 1997) that created the idea of Parent to Parent and started the group leadership! ~Founding Member

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!

I got connected to Parent to Parent many years ago as a professional when I would connect the parents of my special needs students to resources and support groups. I am now a resource for other families because I am now the mother of a child who is deaf/hard of hearing. ~Mom with 2 “hats”

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’:

I loved it in the beginning especially, as I could post a question at 2 am, if that was when I had a moment, and the answer would be there in the morning, or the next day. But I did not wake anyone up, and it was there when I could get to it. I had no time or ability to attend a “support” group, in the traditional sense, but my P2P support group was always available. When my son got his g-tube, for feeding, we had a terrible time figuring out how to vent him. I posted a question about it on P2P and a mom from Grand Junction suggested we try something, and that ended up being our answer. We never met, but she helped us tremendously. The power of parent support is in the ability of the parents of parent to parent to reach out and support other parents. Many times I had a specific questions about a surgery, or a therapy, or a method of feeding. I would ask the question on P2P and within hours or days many parents had offered their wisdom, experiences or just a listening ear and the answer for us would emerge from the P2P posts. When My son needed a hip surgery, I was able to reach out to many parents on P2P who were willing to spend a lot of time talking to me and giving me the benefit of their experiences. I do believe that is why our experience was not as horrible as it could have been. It was very helpful to be prepared as we could be for the surgery, the hospitalization, and the recovery. It is the greatest bunch of parents out there. Thank you P2P…you have been my support group for 18 years!

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

Share YOUR Connection with P2P-CO! Take a picture of yourself and your family! Tell us how you got connected on Facebook or Instagram or Twitter! Use #P2PCelebrate20




My Parenting Journey…What Will The Future Hold?

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

Wayla Murrow began her advocacy journey when her daughter was born. This led her to work in many different positions including parent mentor, trainer and advisor for PEAK Parent Center, Outreach Coordinator for the Thrive Center, family survey coordinator for the Colorado Department of Education, contracted trainer for Early Intervention Colorado, and currently an employee as Technical Assistance and Outreach Coordinator for the Early Intervention Colorado program. Wayla is married to Sid with two young adult children, Truitt and Cynda.



Do A Lot, Do a Little…Every Little Bit Helps #SaveMedicaid

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

“Not everyone chains themselves to the busses” thus began my conversation with my then 18 year old who had gone off to college and was trying to figure out how to work on the accessibility issues she saw at her University. She had just said, “Mom, I’m just not comfortable being an activist, an advocate maybe, but not an activist. That’s your thing”

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:

  • What can you do in 5 minutes? First and foremost, share your story. Call, email and fax your legislators. Tell them how Medicaid supports you and your children. Remind them that children grow up and still need supports.  A list of contact information can be found at  You can also download fax or text apps to your phone to make contacting legislators quick and easy!
  • What can you do in 15 minutes? Record a video.  Film a short 1-2 minute video from your phone. You can do it at home, in the office, or while at lunch. Ideas for your video:  Who you are, Where you are from, Why saving Medicaid is important/what it does for you and your family/how would cuts impact you, Call for Senators to work on a bi-partisan solution to health care.  Post your video to social media using #USSpeaksOut.  You’ll be joining families across the country who are advocating to #SaveMedicaid
  • What can you do in 30 minutes? Donate some time and make some phone calls.  Watch for opportunities to do calling for different organizations.  Most organizations now have the technology for you to call from home, they provide a script and list of phone numbers; you provide the time and effort to make the calls!

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:

  • Do you write well? Write a letter to the editor or an Opinion piece and submit it to your local paper.    Check out our Parenting with Altitude Blog or P2P Mom Kelly Stahlman’s writing in The Coloradoan for ideas.  Information on how to write an effective letter   Check here for a list of local Colorado newspapers.  Search for “Submit letter to the editor” for instructions on how to send your letter.
  • Do you use social media? Follow Parent to Parent of Colorado, Association for University Centers for Disabilities, Colorado Cross Disability Coalition, Disability Scoop, Family Voices, the various Arcs on Facebook.   Share their posts. Invite your network to watch their live feeds. Tag news organizations, Tweet and retweet, post to Instagram.   Create a Pinterest page with pictures and images and links to articles.  Share our Parenting with Altitude Blogs that have compelling parent stories.  Join our weekly Parenting with Altitude LIVE broadcast, learn about current issues and share with friends!  It’s important for family members, friends, neighbors and community members who don’t have daily contact with people with disabilities to understand the complexity of the Medicaid issue.  Make those issues real by saying, “This is my family!”
  • Got some time to attend a rally? Go for it. Attend local events and make your voice heard!  Remember we have a constitutional right to free assembly and free speech.  This is an opportunity to give a real life history lesson. Your kids are learning about American history in school, from the Declaration of Independence, to the Abolitionist movement to abolish slavery, to the Civil Rights movement of the 1960s and the Disability Rights movement of the 1970s and onward.  Taking them to an actual event makes the issues real to them!  Before you attend, find out the purpose of the event or rally.  Is it to bring attention, educate, advocate, disrupt?  You do not have to be the ones who are arrested. Most events are NOT design to be actions that may result in arrest; if they are, organizers will be up front about this.  Even when threatened with arrest, you are told disperse and you can leave.
  • Can you help others participate? Volunteer to give other families/individuals rides to events and rallies.

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?

  • As a member of Parent to Parent of Colorado, you’ve signed on to our Mission:
    • 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.
    • For 20 years, the families in Parent to Parent of Colorado have stepped up to support important issues that impact the lives of our members. Together we have advocated for Health Care, Medicaid, Employment First, respite care funding, consumer direction, mandatory reporting of abuse of adults with disabilities and much more!  We encourage you to join in effective and constructive group action to support all of our families.
  • Anyone’s health situation can change in a moment! Last week, our office received a call from a young man who had fallen off a ladder while repairing a window at his sister’s house.  He now has a spinal cord injury, is recovering in a nursing home and will have permanent paralysis.  He was seeking community resources, including Medicaid, to help him transition into an independent living situation.  As Tim said, “My life changed in an instant but now I think I am supposed to have a new purpose.”
  • Bringing it closer to home, your child will grow up. As an adult, your son or daughter may indeed need Home and Community Based Services (Medicaid) supports. Or your parent might. Or anyone of us might have a life change that necessitates support.

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!

All these years later when we travel back to the area, we visit that campus and  I see mothers with toddlers in strollers entering through that accessible entrance. I am proud of my daughter and her team efforts to improve accessibility. I know that students with disabilities decades from now will have access to those buildings that the group fought for. Their names will long since be forgotten, and they have gone on and had jobs and families and moved on with life.

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:

Renee Walbert is a founding member of Parent to Parent of Colorado. She now works as a staff member. If you love to write and would like to share a blog, please contact her at

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 with subject:  Join Policy



Advice on Advocating for Medicaid: Be An Artichoke!

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.


Carrie Ann Lucas is Disabled Parents Rights founder and Executive Director. She specializes in legal representation of disabled parents. Carrie is also a Child Welfare Law Specialist. Carrie also trains attorneys, social workers, and judges on issues impacting disabled parents in child welfare cases around the county. As a single adoptive parent to four children, Carrie is passionate for the rights of parents who have disabilities. Ms. Lucas, who has a form of muscular dystrophy, has an intimate understanding of the unique challenges that disabled parents face. All four of her children also have various disabilities themselves, and as a result, Carrie is an expert at navigating various systems to provide appropriate community services. Carrie has been a recipient of an Equal Justice Works fellowship and a Petra Foundation fellowship. Prior to becoming the Center’s executive director, she worked at the Colorado Cross-Disability Coalition for over twelve years. Carrie also served on the Parent to Parent of Colorado Advisory Board for many years.



My Parenting Journey: Getting Started With Assistive Technology

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:

  • Make note of your child’s strengths and challenges.
  • Start the search for the right person to start the evaluation process.
  • Look for funding sources

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:

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!


Cindy Resides in Colorado Springs with her 18 year old daughter Gabby and her 14 year old twin sons Wyatt and Evan. It was known Wyatt had suffered a brain injury before his delivery. He received his diagnosis of Cerebral Palsy at a year old. That started many hours of research and training to prepare to support Wyatt in having the best life possible. Cindy is a former member of the Parent to Parent Advisory Board and a new member of The Significant Support Needs Advisory Board. She works as a Parent Advisor at PEAK Parent Center where she helps parents and professionals find the resources they need to support the people in their lives.

To ESY or not to ESY? Another Perspective on Extended School Year Services

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  Not a P2P Member?  Join us today!

Renee is a founding member of Parent to Parent of Colorado and currently serves as our Outreach and Membership Coordinator. She and her family escape during the summer to the Colorado mountains!



Mi viaje de crianza: Lo dio dirección a mi vida


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: 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).


My Parenting Journey: Giving Direction to My Life

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:    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.


Chrissy Carrera is the Communications and Bilingual Coordinator at Parent to Parent of Colorado. In this position, she facilitates the Padres a Padres support group for parents who wish to communicate in Spanish as well as handling logistics for our Online Parent Support Group. Chrissy is enthusiastic about connecting with families across Colorado and you can often find her at our P2P booth at resource fairs and community events!

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!



Are YOU Connected? The Power of Parent Support!

 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!

Lisa’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!

Lisa Franklin is the current Lead Program Coordinator for Parent to Parent. She is a mom of three and a Nana of four. Renee Walbert is the Membership and Outreach Coordinator. She is a mom of three and Oma of one. Together with our Bilingual Coordinator, Chrissy Carrera, we love supporting families and advocating in the community…and enjoy a bit of silliness from time to time too!


My Parenting Journey: Becoming a Parent Leader

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:  All partners classes are free!

Jessica Howard is the mom of a son with autism who accesses Special Education supports via an Individualized Education Plan. She was a participant in the DD Council Leadership grant and is now a Council member. Jessica Howard works at the ACLU of Colorado. Marcia Tewell is the Executive Director of the Colorado Developmental Disabilities Council. A long time advocate for people with disabilities in our community, Marcia has a background in special education, advocacy, and public policy.

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?

¿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:

  • Póngase en contacto con sus legisladores hoy, mañana y el día siguiente.
  • ¡Usted puede llamar, email, y incluso el fax para libre!
  • Llame hasta que sepamos que nuestros niños pequeños, nuestros niños en edad escolar y nuestros hijos adultos tienen los servicios de Medicaid que se merecen.
  • Nuestros Senadores y Representantes en el Congreso están escuchando.

¡Nuestras voces juntas son poderosas!

Líder del pensamiento, innovador, provocador son sólo algunas palabras que capturan la pasión apasionada de Katherine Carol para mejorar las vidas de las personas con discapacidades. Katherine y su hija, Mikelle han estado defendiendo la tecnología como una necesidad para que las personas con discapacidad experimenten una inclusión plena y próspera en la comunidad del siglo 21. Katherine y Mikelle han estado informando y asesorando a las familias sobre las prácticas de transición exitosas en su Son miembros fundadores de Families at the Forefront of Technology (Primer plano de la tecnología), una organización fundada y dirigida por familias dedicadas a trabajar con innovadores tecnológicos como Apple y Google para dar forma a las estrategias y soluciones de Rehabilitación del Siglo 21.

Katherine Carol aprovecha décadas de experiencia personal y profesional para crear soluciones innovadoras de rehabilitación para personas con necesidades especiales, familias, formuladores de políticas y proveedores de servicios. Junto con su hija Mikelle, se han centrado en el uso de la tecnología para mejorar la capacidad de Mikelle para trabajar, poseer su condominio y administrar su casa y el equipo de apoyo. Entre sus diversos trabajos de Katherine, actualmente trabaja como miembro del consejo para la Iniciativa de Washington para Empleo Apoyado, es miembro del Consejo de Rehabilitación de Colorado y está copresidiendo los esfuerzos de Colorado First Employment.

Will YOU March for Medicaid?

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!

Thought leader, innovator, provocateur are just a few words which capture Katherine Carol’s passionate persistence to improving the lives of people with disabilities. Katherine and her daughter, Mikelle have been advocating technology as a necessity for people with disabilities to experience full and prosperous inclusion in the 21st Century community. Katherine and Mikelle have been informing and mentoring families on successful transition practices on their TheShiningBeautifulSeries.

They are founding members of Families at the Forefront of Technology, an organization started and run by families dedicated to working with technology innovators such as Apple and Google to shape 21st Century Rehabilitation strategies and solutions. Katherine Carol leverages decades of personal and professional experience to create innovative rehabilitation solutions for people with special needs, families, policymakers and service providers. Together with her daughter Mikelle, they have focused on using technology to enhance Mikelle’s ability to work, to own her condo and manage her home and support team.

Among many of Katherine’s various roles, she currently services as a board member for the Washington Initiative for Supported Employment, is a council member for the Colorado Rehabilitation Council and is co-chairing Colorado’s Employment First efforts.


Eres Mi Fuerza, Eres Mi Debilidad

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: para Padres a Padres. Ayudamos con la edición, el formato y la búsqueda de imágenes para su escritura!


Our blog author, Carole Bakhos says, “The moment our daughter was born and rushed into the ICU, all my identities morphed into one… the mother of a sick child. Our journey with Yara helped us reach parts of ourselves we didn’t have to tap into before. We have experienced deep sorrows of the unknown future and intense happiness for every little accomplishment. Our perspectives have changed and none of the world’s troubles matter anymore. She is strong, happy, and healthy and she handles herself with such great self-confidence. We are so proud of everything she is and thankful that she has helped us become better people.” Carole, her husband, and daughter Yara, moved to Colorado last year and Carole immediately sought support from Parent to Parent of Colorado. Carole jumped in to become the newest member of our P2P Advisory Board in October 2016.


You Are My Strength…You Are My Weakness

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: 

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!


Our blog author, Carole Bakhos says, “The moment our daughter was born and rushed into the ICU, all my identities morphed into one… the mother of a sick child. Our journey with Yara helped us reach parts of ourselves we didn’t have to tap into before. We have experienced deep sorrows of the unknown future and intense happiness for every little accomplishment. Our perspectives have changed and none of the world’s troubles matter anymore. She is strong, happy, and healthy and she handles herself with such great self-confidence. We are so proud of everything she is and thankful that she has helped us become better people.” Carole, her husband, and daughter Yara, moved to Colorado last year and Carole immediately sought support from Parent to Parent of Colorado. Carole jumped in to become the newest member of our P2P Advisory Board in October 2016.


Rodando de la Negación

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   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 o Teléfono 877-472-7201.


Nathan resides in Arvada, CO with his wife Renee, his 9-year-old musically-gifted son Zak, his 4-year-old princess Madison, a rescue mutt named Ludwig and an outdoor cat called Shredder. The birth of Zak and his CP diagnosis changed their lives for the better, even though it was through many struggles and trials. Their family felt complete when they adopted Madison from medical foster care in early 2013. Nathan serves on the board of two organizations: Parent to Parent of Colorado and the Colorado Foundation for Conductive Education. In 2010, Nathan and Renee created a website to blog, post videos and connect with other families raising children with special needs. Nathan and Renee work from home, enjoy family time and love date nights at those instructed-paint-and-drink-wine-places.

Wheeling Out of Denial

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   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:

Not a P2P Member?  Join Us TODAY!


Nathan resides in Arvada, CO with his wife Renee, his 9-year-old musically-gifted son Zak, his 4-year-old princess Madison, a rescue mutt named Ludwig and an outdoor cat called Shredder. The birth of Zak and his CP diagnosis changed their lives for the better, even though it was through many struggles and trials. Their family felt complete when they adopted Madison from medical foster care in early 2013. Nathan serves on the board of two organizations: Parent to Parent of Colorado and the Colorado Foundation for Conductive Education. In 2010, Nathan and Renee created a website to blog, post videos and connect with other families raising children with special needs. Nathan and Renee work from home, enjoy family time and love date nights at those instructed-paint-and-drink-wine-places.

Mi Viaje de Crianza…Presunto Competencia!

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:


¡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 para más información!


Gerrie Frohne is 76 years “young”, with 45 years’ experience as a volunteer advocate for individuals with disabilities and their families, beginning with the birth of her son who experienced very significant disabilities. She has been a member of Parent to Parent of Colorado since its inception. Gerrie has served for many years on the P2P Advisory Board and regularly participates in various advocacy efforts in the community. For her continued work in the community, Gerrie received the Outstanding Family Advocate award from Ability Connection Colorado in 2014.

My Parenting Journey….Presume Competence!

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:

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

Not a P2P Member?  Join us at


Gerrie Frohne is 76 years “young”, with 45 years’ experience as a volunteer advocate for individuals with disabilities and their families, beginning with the birth of her son who experienced very significant disabilities. She has been a member of Parent to Parent of Colorado since its inception. Gerrie has served for many years on the P2P Advisory Board and regularly participates in various advocacy efforts in the community. For her dedicated work in the community, Gerrie received the Outstanding Family Advocate award from Ability Connection Colorado in 2014.

¡Ola tu varita mágica!

¡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:

  • Que mis hijos son vistos primero como personas (no su discapacidad) – Cindy
  • La gente lo vería como yo lo veo – Shannon
  • Cambiar los corazones de todos los seres humanos para que sean aceptables, cariñosos y no juiciosos – Jeanette
  • Más dinero infundido en un sistema que podría proporcionar apoyo y atención adecuada y apropiada – Brenda
  • Le concedería todas sus habilidades físicas y estaría seguro de que mantendría sus dones de música y el tono perfecto – Nathan



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

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!

Lisa Schwartz Franklin es madre de 3 hijos adultos y Nana a 4 nietos. Ella ha estado casada con el mismo fantástico hombre durante 35 años. Lisa pasó 30 años como maestra de educación especial y administrador y “jubilada” para convertirse en la Gerente de Programa para P2P hace más de 3 años. Lisa dice que este es el trabajo más gratificante conectar a los padres entre sí!




Wave Your Magic Wand!

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:

  • That my children are seen as people first (not their disability) – Cindy
  • People would see him as I see him — Shannon
  • Change the hearts of all humans to be accepting, loving, and non-judgmental – Jeanette
  • More money infused into a system that could provide adequate and appropriate supports and care – Brenda
  • I would grant him all of his physical abilities and be sure he would keep his gifts of music and perfect pitch – Nathan



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

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!


Lisa Schwartz Franklin is mom of 3 adult children and Nana to 4 grandchildren. She has been married to the same fantastic guy for 35 years. Lisa spent more than 30 years as a special education teacher and administrator and “retired” to become the Program Manager for P2P almost 4 years ago. Lisa says this is the most rewarding job ever connecting parents to each other!


Mi viaje de crianza… el poder del apoyo de los padres

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!

¿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

Shannon Secrest was born in Wyoming, but traveled the globe with her family at an early age. Her family travels took them to North Africa for 4 years and to South America for 2 years. During their tenure abroad, the family trekked extensively throughout 24 countries, being captivated by each unique people, culture, and language. In her little bit of free time, Shannon enjoys coffee with friends, short trips by car for a “stay-cation”, reading, and listening to all different kinds of music. She is a single parent of two amazing kids, ages 13 and 10. Shannon says, “It’s my son and his multiple diagnoses and needs which brought me to the Intellectual/Developmentally Delayed community. I sit on numerous State committees and boards, however, I am an avid mentor, trainer, and advocate. My current focus is Health Policy, specifically centering on Medicaid, State Waivers and Home Health Care issues. My passion is systems advocacy surrounding health equity and social justice issues, and ensuring families have equal and appropriate access to services across all state systems.”

My Parenting Journey…the Power of Parent Support!

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.

Shannon Secrest was born in Wyoming, but traveled the globe with her family at an early age. Her family travels took them to North Africa for 4 years and to South America for 2 years. During their tenure abroad, the family trekked extensively throughout 24 countries, being captivated by each unique people, culture, and language. In her little bit of free time, Shannon enjoys coffee with friends, short trips by car for a “stay-cation”, reading, and listening to all different kinds of music. Shannon is a single parent of two amazing kids, ages 13 and 10. She says, “It’s my son and his multiple diagnoses and needs which brought me to the Intellectual/Developmentally Delayed community. I sit on numerous State committees and boards. I am an avid mentor, trainer, and advocate. My current focus is Health Policy, specifically centering on Medicaid, State Waivers and Home Health Care issues. My passion is systems advocacy surrounding health equity and social justice issues, and ensuring families have equal and appropriate access to services across all state systems.”

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!


Siete Ideas Para Romper el Estrés de Las Vacaciones Para Familias con Necesidades Especiales

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:

  1. Baje las expectativas. Sea realista acerca de lo que puede hacer. Cambiar tradiciones – igual de bueno, pero único para su familia. Tenemos una nueva tradición de vacaciones. Nadie viene para Nochebuena-los niños se van a la cama temprano, tenemos una cena romántica de vacaciones a la luz de las velas. Miramos “Es una vida maravillosa” y nos vamos a la cama.
  2. Tómar tiempo para reflexionar sobre lo que está haciendo hincapié en usted, y busque alternativas. Cambiar sus demandas a las preferencias: Dígase, “Si tengo tiempo, voy a hacer esto y lo otro”. Si no, sólo haré eso. “Solía acentuar que los niños intercambiaron regalos entre sí. Ahora jugamos un juego de Navidad. Puedo comprar suficientes regalos pequeños para cada persona presente el día de Navidad. Cada uno de nosotros escogemos un regalo envuelto y nos sentamos en un círculo. Leí “La noche antes de Navidad” y cada persona pasa su regalo a la derecha en la palabra “el”. El niño más pequeño consigue abrir su regalo primero o intercambiar con otro. Hay más diversión y risas y menos estrés que nuestra tradición original.
  3. Asegúrese de “compartir” la diversión! Incluso el niño más joven o el niño con la necesidad más significativa debe tener la oportunidad de ser parte de la tradición dando de sí mismos.
  4. No ceder a los “gimmies”. Está bien decirle a su hijo que un regalo es demasiado caro. Utilice las tradiciones para hacer las fiestas divertidas en lugar de añadir estrés financiero. Enseñe a sus hijos esta rima útil: “Un regalo que quiero, un regalo que necesito. Uno para usar, uno para leer! “¡Pídale a su cónyuge y familiares que lo apoyen!
  5. Sea realista acerca de familiares y amigos. No siempre entienden las necesidades de su familia. Sea honesto y claro acerca de lo que puede y no puede hacer en relación con reuniones familiares y regalos. Recuerde que usted tiene que vivir con las consecuencias de demasiada sobre-estimulación y demasiados cambios en el horario de su hijo. Sea un defensor de su hijo y usted mismo en estas situaciones. ¡Y trate de no sentirse culpable cuando necesita decir “no”!
  6. Ser realista y sensible a las necesidades de su hijo y planificar en consecuencia. Contratar a un niñera para eliminar la toma de su hijo en los viajes de compras adicionales o fiestas que no puede ser apropiado para él / ella. Tiempo de descanso comercial con otro padre con el fin de decorar o limpiar la casa para la empresa. Traiga artículos de comodidad y alimentos si usted asiste a una fiesta y salir antes de que todo el mundo está estresado, si es necesario!
  7. Tener sentido del humor. Recuerde que lo que puede parecer una historia de horror para usted ahora se encontrará en el “libro” de recuerdos de la familia como algo divertido en unos pocos años! Recordar el tiempo….

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!

Robin Bolduc was the original project director for Parent to Parent of CO. She was “introduced” to the world of disability when she adopted her daughter with Down syndrome in 1988. As she registered her daughter for kindergarten, she was told “we have a special place for children like her.” Robin’s journey into the world of disability advocacy began so her daughter could attend her local school. The school district dubbed her “Attila the Mom,” a title that she wears proudly. Robin and her husband Bruce have yours, mine and ours including fostering and adoption and are now happily enjoying grand parenting as well! They split their time between Boulder and the mountains, enjoying the beauty that each offers.

¿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:  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:

Seven Holiday Stress Busting Ideas for Families with Special Needs


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: 

  1. Lower expectations. Be realistic about what you can do. Change traditions — equally good, but unique to your family.   We have a new holiday tradition. No one comes for Christmas Eve-kids go to bed early, we have a romantic holiday dinner by candlelight. We watch “It’s a Wonderful Life” and go to bed.
  2. Take time out– rethink what’s stressing you, and look for alternatives. Change your demands to preferences: Tell yourself, “If I have time, I’ll do this and that. If not, I’ll only do that.”  I used to stress out making sure the children exchanged gifts with each other.  Now we play a Christmas game. I buy enough small gifts for each person present on Christmas Day.  We each pick a wrapped gift and sit in a circle.  I read “The Night before Christmas” and each person passes their gift to the right on the word “the.”  The youngest child gets to open their gift first or exchange with another. There’s more fun and laughter and less stress than our original tradition.
  3. Be sure to “share” the fun! Even the youngest child or the child with the most significant need should be given opportunity to be a part of tradition by giving of themselves.
  4. Don’t give in to the “gimmies.” It’s okay to tell your child that a gift is too expensive. Use traditions to make holidays fun rather than adding financial stress.
  5. Be realistic about relatives and friends. They won’t always understand the needs of your family. Be honest and clear about what you can and cannot do related to family gatherings and gift giving. Remember that you have to live with the consequences of too much over-stimulation and too many changes in your child’s schedule. Be an advocate for your child and yourself in these situations. And try not to feel guilty when you need to say, “no”!
  6. Be realistic and sensitive to your child’s needs and plan accordingly. Hire a baby sitter to eliminate taking your child on the extra shopping trips or holiday parties that might not be appropriate for him/her. Trade respite time with another parent in order to decorate or clean the house for company.   Bring comfort items and foods if you do attend a party and leave before everyone is stressed, if you need to!
  7. Have a sense of humor. Remember that what may seem like a horror story to you now will find itself in the “book” of family memories as rather funny in a few years! Remember the time….

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!

Robin Bolduc was the original project director for Parent to Parent of CO. She was “introduced” to the world of disability when she adopted her daughter with Down syndrome in 1988. As she registered her daughter for kindergarten, she was told “we have a special place for children like her.” Robin’s journey into the world of disability advocacy began so her daughter could attend her local school. The school district dubbed her “Attila the Mom,” a title that she wears proudly. Robin and her husband Bruce have yours, mine and ours including fostering and adoption and are now happily enjoying grand parenting as well! They split their time between Boulder and the mountains, enjoying the beauty that each offers.

How do you “bust” your holiday stress?  Share your thoughts and ideas with us on our Online Parent Support Group!  Email your thoughts to:   Not a P2P member?  You can join us by completing our registration form at:  It’s quick and easy and it’s free!

For more ideas about coping with holiday situations, visit:


Redefiniendo la Maternidad… en una Temporada de Ausencia

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.

Originally from Salt Lake City, P2P Board member Deon Gillespie works as a freelance writer, editor and media relations consultant. She began her career in the news industry, then came to Colorado as a Census Bureau media specialist. Deon is also a member of the Colorado Developmental Disabilities Council where she serves on the Planning and Grants Committee. Active in the community on many levels, Deon believes if you live in a community, you have to be a part of making it a better, more diverse and inclusive place to live. She enjoys theater, dance, film and a little bit of nearly everything else. Deon has one daughter, Calise, who is 16-years-old.Content goes here

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

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!


Originally from Salt Lake City, P2P Board member Deon Gillespie works as a freelance writer, editor and media relations consultant. She began her career in the news industry, then came to Colorado as a Census Bureau media specialist. Deon is also a member of the Colorado Developmental Disabilities Council where she serves on the Planning and Grants Committee. Active in the community on many levels, Deon believes if you live in a community, you have to be a part of making it a better, more diverse and inclusive place to live. She enjoys theater, dance, film and a little bit of nearly everything else. Deon has one daughter, Calise, who is 16-years-old.

Una Temporada para Dar y Tener Gratitud


“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:


A Season of Gratitude and Giving


“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:

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:




Lori Parker, Shirley Swope and Renee Walbert are active, long time members of Parent to Parent of Colorado. We are grateful to them for sharing their thoughts during this season of Gratitude and Giving!

Sensory Friendly Events Provide Inclusion for ALL Families!


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

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.

Julie Marshall is a mom to Sarah, 12, who has severe autism and learned to speak full sentences through music. She is a longtime journalist and community activist. She is the founder of BrainSong which promotes “No Shushing Events”

P2P Get Out The Vote!

Parent to Parent of Colorado supports the right of ALL citizens to vote! Find your local polling location or ballot drop off location here.

Oak versus Willow!

willow 2

“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?

willow 3

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.

Renee Boyes Walbert has been with Parent to Parent since the beginning! She has served as an Advisory Board member and later joined the P2P Staff Team. Renee has had many roles in our organization and is currently the Membership and Outreach Coordinator. Renee is a wife, mother of three and the grandmother of one. She has extensive experiences with the disability community including various services and supports; she participates in multiple public policy efforts to make positive changes in systems. You can reach Renee at

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:

Not a member?  It’s free and easy to join!  Become A P2P Member

Thanks, Neighbors!

premier_sponsorA 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!

Get to Know Your P2P Neighbor!

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: post Getting to Know Your P2P Neighbor!


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