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

by Parent-to-Parent | Oct 7, 2017 | P2P

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: www.brainsong.net

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

by Parent-to-Parent | Oct 2, 2017 | P2P

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…

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.
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.
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

by Parent-to-Parent | Sep 18, 2017 | P2P

My Parenting Journey: A Superlative Prognosis

She walks out of the testing room, clipboard in hand. She’s young; probably first or second year out of college. Almost timidly she looks at my wife Renee, and me and says, “Your son does not qualify for speech therapy. He would be better served in augmentative communication. He will never talk as his main form of communication.”

It’s the kind of arrogant, ignorant statement only the purely-by-the-book academic world produces. No real world experience. No exceptions to the data. No understanding of the dynamic nature of the human spirit and mind. No room to accept positive possibilities. No admittance that the seemingly impossible can be overcome.

Renee starts crying. I stare at this therapist in fury. My insides boil. How dare she make such a declarative statement about my son – MY SON – when he’s only two-years-old! At this moment, the angel and demon of my mind flare up in debate of whether to lash out at this young therapist with all the righteous indignation I can muster; or instead kindly dismiss her prognosis and let the fire inside spur me to find the resources my son needs to overcome the challenges he was given.

As much as I may want to choose the demon’s advice, I kindly dismiss this whole evaluation. When we all get home, I begin looking for a private speech therapist, one I’ll most likely have to pay for out-of-pocket. But regardless, I’m willing to do what it takes so my son will learn to overcome – he WILL learn to talk.

Fast-forward six years and my son Zak is now eight-years-old. He talks for all of his communication. Renee and I began teaching him the alphabet phonetically – so “B” was “Bah” instead of “Bee”; “S” is “Sssss” instead of “Es”; etc. He was able to say his name by sounding out each letter “Z” “A” “K” then working to blend it all together for Zak. (We actually changed the spelling of his short-name from Zach to Zak in order for him to more accurately sound out his name phonetically).

We also found a wonderful private speech therapist for him to see about twice a week. On top of that, when he started Kindergarten at our neighborhood public school, we were blessed to find they have the most amazing speech therapist ever. She engaged Zak with her personality and speech games, which led to vast improvements in his overall speech communication year over year. There was a time where the vowel sound for “E” was so difficult for Zak to produce (he would always say it as “ah”), we were beginning to wonder if he would ever be able to achieve that sound. Near the end of Kindergarten, he was successfully saying the vowel sound for “E” and is quite the talker in a multitude of settings.

And sure, obstacles remain – sometimes it can be hard for someone unfamiliar with Zak to fully understand what he’s saying. But with good listening ears and patience, he can be understood well. He loves greeting people (“Hi Ms. Smith! How are you today? How was your evening?”), introducing himself (“My name is Zak. What’s your name?), and calling out all the musical notes and chords he hears in songs (“A sharp minor” “C flat major”) He has a surprising musical gift that hears perfect pitch and he’s self-taught all the notes and chords on piano and guitar.

Sometimes, I think about tracking down the ill-informed therapist to show that purely booked-based academics and rigid assessments based on a few data points will never, ever fully measure nor define the potential, tenacity and achievement of one individual. There’s knowledge and wisdom that can only come from opening one’s eyes to accepting the possibilities, the dynamic probabilities, and even the outright miracles that can happen.

But I’m not quite sure if I’ll chose the angel-side in my approach… or unleash the devilish “I-told-you-so / We-were-right-you-were-so-so-wrong-so-very-wrong/ Boom-in-your-face / He-talks-when-you-said-he-never-would-how-do-you-like-dem-apples?”

I suppose for now, I’ll merely hope and pray she’s learned wisdom after six-years working in her field and will spare any other family a superlative negative prognosis.

Editor’s Note: We always hope that professionals will give us an honest assessment without making predictions about our son or daughter’s potential….because so many of our children have exceeded their “predicted” potential! How do you want professionals to share information with you? We’d love to hear your advice and experiences on our Online Parent Support Group! Email us at p2p-co@yahoogroups.com

Are YOU Connected? A parent to parent connection provides you with support on the journey of parenting your son or daughter with disabilities or special health care needs. Join Us!

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

by Parent-to-Parent | Sep 18, 2017 | P2P

Mi Viaje de Crianza: Bendición en Disfraz

Me tumbé en el ensordecedor silencio esperando escuchar tu primer grito. Había viviendo mi vida hasta ese punto pensando que no hay necesidad de preocuparse, las cosas buenas siempre me suceden, todo siempre resulta bueno… son estos pocos momentos que cambiaron esta creencia fundamental y mi viaje con la preocupación acababa comenzar.

Te llevaron inmediatamente a la ICU… no fue hasta 10 días más tarde que pudimos mantenerte por primera vez. Tardó 6 semanas antes que pudieras volver a casa… esperamos meses y meses antes de que vimos tu primera sonrisa. Y no fue hasta 3 años más que tu caminaste lentamente en nuestros brazos.

Después de un largo viaje de pruebas buscando la causa raíz, finalmente conseguimos nuestra respuesta… Tú me tienes- esta persona de Beirut, Líbano que conoce a este tipo de Delhi, India en el estado de Nueva York, de todos los lugares, y ahora tengo un bebé con una condición genética rara y aleatoria que sólo docenas en el mundo tienen. Ya no estaba segura…
¿Todo va a estar bien? ¿Alguna vez me van a pasar cosas buenas?

Decidimos tomar las cosas en nuestras propias manos. Dejé mi trabajo, nos trasladamos a Colorado para un nuevo comienzo necesario, comenzó una empresa de apoyo a las familias con necesidades especiales y pongo mi enfoque en ti y el diagnóstico. Estos pasos audaces que tomamos abrió muchas puertas para nuestra familia. A través de las redes sociales, ahora estamos conectados con 39 familias de todo el mundo que tienen el mismo diagnóstico. Tenemos un grupo de 9 investigadores emocionados por aprender más acerca de sus historias. Y gracias a una familia maravillosa en el mismo barco que nosotros, tenemos un punto de partida para recaudar fondos los $12,000,000 necesarios para llevarnos a ensayos clínicos. Y tú… dulce niña… estás haciendo un tremendo progreso; el foco en usted está haciendo una gran diferencia en su desarrollo.

Reflexionando atrás, me doy cuenta de que tenerte, con tu singularidad, es otra cosa buena que me ha sucedido. Tuve la oportunidad de ser una mejor persona. Tuve la oportunidad de gastar cada poco de mi energía en algo que importa tanto. Tuve la oportunidad de conocer a familias maravillosas de todo el mundo y gestionar un proyecto de investigación de vanguardia que tiene el potencial de cambiar el mundo.

Y tú … dulce Yara … No puedo empezar a decirte cómo llenas nuestros corazones y vidas con alegría y amor. Juntos, seremos testigos de cambios que darán poder a las generaciones venideras. Juntos, disfrutaremos cada poco de nuestro viaje … juntos haremos de este mundo un lugar major.

Eres mi bendición disfrazada. Te amo a la luna y de regreso y a la luna otra vez…

Nota del editor: Sobre la condición…Usted puede aprender más sobre los ángeles de la Guardia de Jordania ver Carole y su familia en: https://www.youtube.com/watch?v=tNUhvSLTK3M Para más información sobre trastornos raros, National Organization for Rare Disorders

El Síndrome de Jordan o la variación del gen PPP2R5D es una mutación genética rara y aleatoria. La condición se ha descubierto recientemente y no se sabe mucho sobre él hasta ahora. Algunas características incluyen retrasos globales en el desarrollo, mayor tamaño de la cabeza, hipotonía, retraso en el habla y posibles convulsiones. Con la variación que afecta la función del cerebro y no la estructura, los investigadores creen que hay un potencial para el tratamiento… un tratamiento que no existe todavía. Tenemos un equipo reunido en busca de una cura o incluso la reversión del gen, aprender más sobre la investigación. Más información http://jordansguardianangels.org/ y www.ppp2r5d.com

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 ccarrerap2p@abilityconnectioncolorado.org

My Parenting Journey: Blessing in Disguise

by Parent-to-Parent | Sep 8, 2017 | P2P

My Parenting Journey: Blessing in Disguise

I lay down in the deafening silence waiting to hear your first cry. I had lived my life up to that point thinking that there is no need to worry, good things will always happen to me, everything always turns up to be okay… it is these few moments that changed this fundamental belief and my journey with worry had just started.

You were immediately rushed to the ICU… it wasn’t until 10 days later that we were able to hold you for the first time. It took 6 weeks before you could come home… we waited months and months before we saw your first smile and it wasn’t until 3 years later that you slowly walked into our arms.

After a long journey of tests searching for the root cause, we finally got our answer… You have me, this person from Beirut, Lebanon meeting this guy from Delhi, India in Upstate NY, out of all places, and ending up with a baby girl with a rare and random genetic condition that only dozens in the world have. I just wasn’t sure anymore… is everything going to be okay? Are good things going to happen to me?

We decided to take matters into our own hands. I left my job, we relocated to Colorado for a needed fresh start, started a company supporting families with special needs and put my focus on you and the diagnosis. These bold steps we took opened many doors for our family. Through social media, we are now connected to 39 families around the globe that have the same diagnosis. We have a group of 9 researchers excited to learn more about your stories and thanks to a wonderful family in the same boat as us, we have a starting point towards fundraising the required $12,000,000 to get us to clinical trials. And you… sweet baby girl… you are making tremendous progress; the focus on you is making a big difference in your development.

Reflecting back, I realize that having you, with your uniqueness, is nothing but another good thing that has happened to me. I got the opportunity to become a better person. I got the opportunity to spend every little bit of my energy on something that matters so much. I got the opportunity to meet wonderful families from around the globe and to manage a cutting-edge research project that has the potential to change the world.

And you… sweet Yara… I can’t begin to tell you how you fill our hearts and lives with joy and love. Together, we will witness changes that will empower generations to come. Together, we will enjoy every bit of our journey… together we will make this world a better place.

You are my Blessing in Disguise. I love you to the moon and back and to the moon again…

Editor’s Note: You can learn more about Jordan’s Guardian Angels see Carole and her family at: https://www.youtube.com/watch?v=tNUhvSLTK3M For more information on Rare Disorders, check out the National Organization for Rare Disorders. Jordan’s Syndrome or variation on the gene PPP2R5D is a rare and random genetic mutation. The condition is newly discovered and not a lot is known about it as of yet. Some characteristics include global developmental delays, larger head size, hypotonia, delayed speech, and potential seizures. With the variation affecting the function of the brain and not the structure, researchers believe there is a potential for treatment… a treatment that doesn’t exist as yet. We have a team assembled searching for a cure or even reversal of the gene, learn more about the research. Visit www.jordansguardianangels.org and www.ppp2r5d.com

Are YOU Connected? Connecting with other parents helps you discover that you are not alone! Join 4000 members across Colorado who support each other in parenting our sons and daughters with disabilities and special health care needs! Visit: www.p2p-co.org

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!

by Parent-to-Parent | Aug 28, 2017 | P2P

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 20^th 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?

by Parent-to-Parent | Aug 1, 2017 | P2P

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

by Parent-to-Parent | Jul 6, 2017 | P2P

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 usa.gov/elected-officials. 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 rwalbertp2p@abilityconnectioncolorado.org

Want to be part of our Parent to Parent Community that learns about, discusses, and takes action around policy that impacts people with disabilities? Join P2P-Policy! Send an email to infop2p@abilityconnectioncolorado.org with subject: Join Policy

Advice on Advocating for Medicaid: Be An Artichoke!

by Parent-to-Parent | Jun 26, 2017 | P2P

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

by Parent-to-Parent | Jun 12, 2017 | P2P

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: p2p-co@yahoogroups.com

Are YOU Connected? Parent to Parent of Colorado Connects families of sons and daughters with disabilities and special health care needs to information and emotional supports. It’s free and easy to join us!

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

by Parent-to-Parent | May 30, 2017 | P2P

A sign with an arrow pointing to the left says This Way Street. An arrow pointing to the right says That Way Boulevard. How do you choose ESY or no ESY?

To ESY or Not to ESY? Another perspective on Extended School Year!

Extended School Year (ESY): The special education program and services that are provided during school breaks that support students with disabilities to maintain skills.

There are many, many families who choose an extended school year for their children, and for many different reasons. If your child is eligible and you desire it, as a parent you have a choice to make! To ESY or not to ESY?

For our family, though our children were eligible for ESY since pre-school and throughout their school careers, we always chose NOT to attend the program.

Image description: A picture of different color chairs on a beach with the ocean in the background. The caption says Summer Vacation

Summer has been the time that our family has really tried to be more typical.

When our children were home, I didn’t usually work in the summer, or I have had jobs with flexibility where I could reduce my hours or work from home. So obviously, having mom available at home is what has enabled us to do this.

Summer is when we sent the kids to camp-day camp when they were pre-school, moving up to overnight camps as it became more age appropriate. Sometimes these have been camps for children with special needs, but more often than not, we’ve adapted regular programs for them. This involved some creativity on our part and collaboration with programs as my son, Aaron has significant cognitive and physical disabilities and my daughter, Deidra is legally blind, and has health and mental health issues.

Image description: A picture of young men and women. Some are riding horses and some are leading the horses. In the background are summer camp grounds.

You do need to know it took some wheedling, cajoling, and encouraging of the staff to convince them that they were good and qualified to work with our kids-they weren’t necessarily to start with, but I wasn’t about to let them know that! And by the time the camps were done, they certainly could handle much more than to begin with.

Summer was also the time when we could work on other skills at a more leisurely pace. Depending on the summer, we would focus on physical skills, potty training, social or academic skills , but not usually all at the same time.

Image description: A picture of a family with a mother, father and two young boys. They are sitting on a blanket with a picnic at a summer concert.

We also used summer to do fun family activities: take picnic lunches or picnic suppers, free concerts in the parks and community theater. This meant that Mom and Dad got a little piece of culture in their lives and the kids learned to appreciate lots of different kinds of music or other performances. Since it’s outside, while they are on that learning curve of when to be quiet and when to talk, no one minds, because we aren’t sitting in a stuffy concert hall.

We are fortunate in Colorado to have great family activities available! We went to play grounds (search here for accessible parks and playgrounds), spent time with typical kids, solidified our friendships with other kids with disabilities, went camping as a family, took vacations, visited relatives, learned to swim and hung out at the pool.

Did the kids regress over the summer? Sure, a little. But the break from routine and the opportunity to try new things and just enjoy summer-looking for butterflies, touching dandelions under our chins, smelling the flowers, feeling ants crawl over our legs (a challenge for kids with SI issues!), burying each other in the sand was invaluable for our family!

Image description: A picture of a family hiking in the woods. On the left is a teenage boy standing, a young boy who uses a wheelchair. In the center is a woman standing. On the right is a man standing behind another young person who is using a wheelchair.

I won’t deny, it took some effort and planning and work on my part, but I wouldn’t trade those times for anything. I was always more than ready to send my kids back by the time school starts again.

So, if you think your child really needs ESY, and would be harmed without it, go for it!

But if you want to take another perspective, look at summer (or other school break times) as an adventure — a chance to see who your child is as a family member, a member of the community, a friend, a sibling, a person outside of the school setting. Don’t be afraid to fail. Not all of our summer activities have been successful, but we learned from each of them.

For more information on Extended School Year Services:

Let’s continue this conversation! What are your plans for summer with your family? What activities are you looking forward to? Do you need ideas for accommodations for your son or daughter?

Share with us by emailing p2p-co@yahoogroups.com Not a P2P Member? Join us today!

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!

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