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: https://www.coloradogives.org/P2PCO Usted también puede honrar a un ser querido con su donación ahora o en cualquier momento durante el año! El 100% de su donación va directamente a nuestro programa de apoyo y las donaciones a Padre a Padre son deducibles de impuestos (consulte a su profesional de impuestos).

Sergio

My Parenting Journey: Giving Direction to My Life

My Parenting Journey:  Giving Direction to My Life 

Sometimes situations happen in our life and we have no understanding as to why or how we will even see a brighter day.  This happened when my daughter, Valerie, was born with Down syndrome. When she was first diagnosed, I was 6 months pregnant.  Due to her poor cardiac and kidney functioning, they said she wouldn’t live long after birth, but somehow she struggled and lived 8 months.  She was also born with a cleft palate. I struggled as to why God had given me 2 healthy children and then a daughter with so many health challenges.  I didn’t know if it was fair to Valerie, to my other children, or to myself.

When Valerie passed away, she passed away in her sleep, at home, next to me in bed. I will never forget that day, when I held her for 4 hours. I couldn’t let go.  I cried and cried with such pain that I thought my heart would stop like hers.  But I had to focus and realize that Valerie was brought into my life to give me direction…and that she did.

A picture of Sergio, a young boy in a wheelchair with a small dog on his lap.

 

I then went back to nursing school the next semester and after a few years, I had the opportunity to work with children with disabilities, from birth to 21 years of age. I did this for 15 years. I loved my special kids and became so close to their families.  I realized that from my pain, Valerie had given me direction in my life to be able to understand what other parents were going through.  I was able to have more compassion and understanding, even upon my pediatric patients’ deaths. I was able to console the family with more empathy, as I understood their pain and sorrow.

Today, I am not practicing pediatric nursing but I continue to work with the disability community.  I love my professional work and my volunteer hours. I love to make a positive difference.  Sometimes situations happen in our life that we have no control over and no understanding about but the direction it takes us is more rewarding than anything we can imagine.

 

 

 

A picture of many people starting to run with a Colfax Marathon sign above them.

 

And with this, I have decided to run the Colfax Marathon (26.2 miles) the weekend of May 20 and 21, 2017. I am running for my daughter Valerie, for my best friend’s son, Sergio, who also passed from complications of Cerebral Palsy, and for all the other children with disabilities in the state of Colorado. I am also running to support Parent to Parent of Colorado!

I won’t lie, I am scared because I know how difficult it will be, but I am determined to finish with this great cause with my little angels helping me along. Never in my life did I ever think that I would run a marathon, but never in my life did I ever think I would be a mom of a Down syndrome little baby.

A picture of Chrissy running on a treadmill at her gym as she trains for the Colfax Marathon.

 

I have been training aggressively because I want everyone to know how children’s health is of such importance and special children and parents face a variety of daily challenges. Your donations to Parent to Parent of Colorado will help me reach my goal of continuing to support families who face daily joys and challenges.

Ability Connection Colorado (the umbrella organization over Parent to Parent) will have a booth at the Colfax Marathon so if you are in the area, I so need your support!

Let’s come together and raise awareness and support each other in the directions led by our special children.

 

 

 

 

 

Editor’s Note:  We often talk about the journey of parenting as a marathon and we are so thrilled that Chrissy is putting her journey into action!  You can support Parent to Parent of Colorado and show your support for Chrissy by making a donation at:  https://www.coloradogives.org/P2PCO    You can also honor a loved one with your donation now or at any time during the year!  Your donation goes directly to our support our program and donations to Parent to Parent are tax deductible (consult your tax professional).

A picture of a woman running on a dirt road with blue sky and clouds on the horizon.

 

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:  infop2p@abilityconnectioncolorado.org  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.  www.usa.gov/elected-officials

¡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 TheShiningBeautifulSeries.com. 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: ccarrerap2p@abilityconnectioncolorado.org 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:  rwalbertp2p@abilityconnectioncolorado.org. 

We help with editing, formatting and finding pictures for your writing! 

Are You Connected?  Join Parent to Parent of Colorado and we’ll connect you with other families of sons and daughters with disabilities and special health care needs.  We provide information, emotional support and more!

 

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 http://www.parentcompanion.org/articulo/the-4-stages-of-adaptation-stage-1-surviving   es un recurso que fue desarrollado en sociedad con Padre de Padre de Texas.

Vamos a mantener la conversación? ¿Cuál es su experiencia con el “reflujo y flujo” de la negación? Comparte tus ideas con Padre a Padre De Colorado

¿No eres miembro de P2P? Conéctese ccarrerap2p@abilityconnectioncolorado.org o Teléfono 877-472-7201.

 

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 http://www.parentcompanion.org/article/the-4-stages-of-adaptation-stage-1-surviving   This was developed in partnership with Parent to Parent of Texas. 

Let’s keep the conversation going?  What’s your experience with the “ebb and flow” of denial?  Share your thoughts with us at: p2p-co@yahoogroups.com

Not a P2P Member?  Join Us TODAY!

 

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:

http://blog.brookespublishing.com/presuming-competence-what-it-is-what-it-looks-like/

Https://www.youtube.com/watch?v=66LrZuWtLjA

¡Continuemos la conversación! ¿Qué estás haciendo para “presumir competencia” con tu hijo o hija? ¿Cómo se comunica esto a otros miembros de la familia, amigos y profesionales? ¡Comparte tus ideas con nosotros! Comentario sobre Padre a Padre de Colorado en Facebook.

¿No es miembro de P2P? únase a nuestro grupo Padre a Padre Facebook! Email ccarrerap2p@abilityconnectioncolorado.org para más información!

 

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.

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