Tag Archives: Easter Seals Greater Houston

Resilient

Gaby1We are a small, young family working and playing hard in Kingwood, Texas. My name is Chris and I’m the dashing and brilliant stay-at-home Dad. My wife is Elisa, the exotic and  mysterious bread winner of the family, and together we have two daughters – Hannah, a five-year-old Wonder Woman and two-year-old Gabriella (Gaby), the thrill-seeking comic of the family.

Gaby was born on November 10, 2015, shortly after we moved to the suburbs of Kingwood from the city of Houston. We felt confident about the delivery since this was Elisa’s second time, and I had plans to take a short break from my career to help get us all settled and then find a new job a few months later. Those expectations changed when the delivery did not go as planned, and Gaby was immediately put on a ventilator as soon as she arrived. I remember she was blue and not breathing. Come to find out she had swallowed muconium on her way out and the fluid was stuck in her lungs. Eventually she started to breathe and move around, but spent the better part of a week in the NICU as a result.

During her time in the NICU the doctors discovered Gaby4a small heart defect. Gaby has a few valves that are thickened and while the thick valves are not causing her any immediate problems, over many months they did lead the doctors down a path to a genetic diagnosis of Kabuki Syndrome.

Turns out, the reason Gaby swallowed meconium is that she has hypertonia. Her muscles, while they can develop and get stronger like any of ours, are naturally weak and hyper flexible. Gaby did not have the muscular control of her mouth or throat to prevent herself from swallowing fluid during delivery. Over time the hypertonia has lead to delays in walking, eating, and for a while, even having a bowel movement on her own. As an infant she needed assistance in every little area of life that we take for granted, because she wasn’t strong enough to do these things on her own. Gaby also had severe reflux, and not only was she not strong enough to swallow, but what formula did go down came right back up in a very violent, retching episode. Eventually she was given a G tube, which allowed us to use a pump to slowly drip formula directly into her stomach, bypassing her mouth and throat completely. Even after the G tube surgery and with the pump, Gaby threw up, screaming and crying, 5-6 times a day for nine months. She didn’t sleep. We didn’t sleep. We just held her and rocked her as she screamed in pain.

As the weeks went on, colobomas were found in both of her eyes resulting in low vision and an immediate diagnosis of legal blindness. Knowing Kabuki can produce hearing loss as well, we tested her ears and found that she has mild to moderate loss in both ears, requiring hearing aids. The combination of vision and hearing loss lead to sensory issues, such as getting overwhelmed in loud, new spaces or feeling uncomfortable touching certain textures.

For months it seemed we found a new challenge to face each week. We lived in the hospital and at doctor appointments. We were scared. We were exhausted. We were not prepared for this.

On top of helping Gaby, we were all of a sudden forced into a situation where we had to take a hard look at our insurance, the surrounding school system, any and every option available to us through the city, state, non-profits, family, friends and whatever else. Through this process – what I call the “business side” of all this – we discovered Easter Seals Greater Houston‘s Early Childhood Intervention (ECI) Program and requested an evaluation.

None of us are prepared for the feelings that come with Gaby3a scenario like this. Just a few months before Gaby was born I had bought a drum kit and was hoping to open my own retail store. Now, overnight, I was having to second guess and completely reevaluate emotions, thoughts, plans and habits that were second nature to me over the previous 35 years. The most difficult obstacle to overcome was accepting what Gaby had and what she was facing enough to do the things that I knew she needed. One of those things was an Early Childhood Intervention evaluation –  probably the first time I had to accept she needed long term help. It was honestly scary.

As nervous and vulnerable as I felt we were at the time, our evaluation was the best thing that could have happened to us. Both Easter Seals therapists were so knowledgeable and understanding of our situation. Even though Kabuki Syndrome is a specific challenge to deal with, these therapists knew so much about the bigger picture – the anger, the sadness, the confusion and, at times, hopelessness. These are experiences that every parent of a child with special needs goes through no matter the diagnosis.

Given Gaby’s situation at the time we were quickly scooped up into the ECI Program and recommended a handful of therapies to begin with, including Physical (Leanne Armel), Occupational (Jessica Valdez/Jackie Wooten), and Speech (Ashly Wiebelt). Eventually we would add an Early Intervention Specialist (Ysabel Luna) when Gaby was a little older. We were also provided an incredible Case Manager (Melodie McDonald) that helped us complete any forms or paperwork, recommended assistance programs that could be available to us at the city and state level, and was also a wealth of knowledge for resources in our immediate community.

Gaby thrived with the support and expertise of the Easter Seals team. The therapists came to our house. We did not have to sit in a small room waiting for them like we did with the doctors. The therapists were flexible and understanding with our schedule, they were prepared for each appointment and most importantly, each and every one of them genuinely cared about all four of us. Honestly, in the beginning, sometimes I just used them as a shoulder to cry on.

The first thing that the Easter Seals specialists told us was that they were not there to do the therapy for us, but to teach Elisa and I how to do it. I appreciated that so much, because the ECI team understood that there is no doctor in our house when Gaby’s G-button falls out. There is no nutritionist in Gaby’s room at 3:00 a.m. when she’s just thrown up all of her food, and there is no physical therapist on standby next door to come teach Gaby how to sit up by herself everyday. That was our job now. Like it or not, as hard as life had been recently, we had to become Gaby’s nurse, doctor and therapist. That was our job as her parents. We had to get with it, and we had to start right away.

Based on our physical therapist’s advice and teaching, we worked every day with Gaby on simple exercises that began with the goal of having her roll over. Eventually she sat up on her own and today, at two years old, she walks. Our speech therapist taught us about strengthening Gaby’s mouth so she could begin to form words and eat food. She introduced Gaby to specific sounds and words to help her communicate. Today Gaby can speak 6-8 words clearly and is picking up sign language very quickly. Our occupational therapist worked for months on tasks as simple as pointing a finger, and today Gaby can sit in a chair, flip through a book and remove pieces of a puzzle. Every baby needs teaching and nurturing to grow, but for a baby with special needs that is naturally going to be delayed they need specific attention given to the little things.

Gaby2Lastly, Easter Seals Greater Houston’s Early Childhood Intervention Program helped us learn how to communicate. We had to develop a way to communicate with Gaby despite delays or physical setbacks. We had to learn how to explain Gaby’s life to her sister Hannah in a way that Hannah felt included and encouraged. We had to learn how to talk to other parents, teachers and even strangers about Gaby in a healthy way, to let them know Gaby is just as strong, smart, and resilient as any other two-year-old. Recently we attended the 4th Annual Kabuki Gathering in San Antonio and met families from our area and their children with Kabuki Syndrome. Without the confidence that ECI has given us to take this new life head on, I do not know if I would have gone. However, it turned out to be one of the best weekends of my life, not mention for Gaby and the rest of our family. Rare conditions like Gaby’s and special needs of all types are so difficult to manage in the beginning, and borderline impossible to do alone. Thanks to Easter Seals’ ECI we never had to be alone and Gaby’s life has been changed forever.

Chris, Early Childhood Intervention Program Parent, Easter Seals Greater Houston

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Exceptional Kids Deserve an Exceptional Education

caroline school blog pic 3

Check out two of The Caroline School‘s awesome students, Jack and Crystal, playing tag around the table!

Both students are working on the physical, social, and cognitive skills of learning at The Caroline School. Jack is out of his wheelchair and working to move his body with primarily his arms. He is playing with Crystal by visually referencing her trying to get him and sharing joy when she does. Cognitively, he is working to coordinate his eye gaze, plan and organize his path away from her, and communicate his happiness in playing. Crystal is working on the physical skills of learning by using the body scooter. She is using her arms to pull and steer her body and her neck and back muscles to keep her head up and track Jack. She is socially sharing joy and anticipation with Jack as she tries to catch him. Lastly, Crystal cognitively decides when to speed up, slow down, or change directions. Moments like these share how learning at The Caroline School is both fun and individualized!

The Caroline School at Easter Seals Greater Houston provides unique educational services to meet the physical, social and cognitive needs of individuals ages 0-21 with multiple disabilities, including those who have additional medical needs.

TCS Collage

With an average class size of eight students and a staff to student ratio of 1:4, The Caroline School teachers are able to meet every student at their particular level. The student’s abilities, rather than disabilities, dictate the pace and path that we follow step by step. Time and attention is invested for every student to feel safe, secure, and cared for no matter their challenges. We feel that this promotes an environment conducive to happy and healthy lifelong learners.

To get an application or schedule a tour please contact our Educational Director, Tabitha Hernandez, at thernandez@eastersealshouston.org.

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Adult Program Gives Participant Sense of Pride

Meet one of Easter Seals Greater Houston’s awesome young adult clients. Every week she participates in our Life Enrichment for Adults with Disabilities (LEAD) Young Adult Day Program. During the LEAD Young Adult Day Program this non-verbal woman with autism, along with other participants blog2ages 18 to 30, partakes in activities focused on enriching life skills and social skills as well as fun recreational activities. During LEAD, we incorporate her communication device as much as possible; while the rest of the time, we speak to each other through eye contact and gestures. Her mom continually says that this is the only place where she feels comfortable enough to leave her daughter.

We love to see how being in the LEAD program has enriched our participants’blog1 lives. For example, this young woman loves to have things in their place, such as, crayons cannot have wrappers on them, water cannot sit in a cup for too long, and shoes come off as soon as it is allowed. One day during Easter Seals Greater Houston’s LEAD at Memorial Drive Presbyterian Church, we made hats (seen in picture) and instead of ripping off the decorations as soon as she got home, she put it on her head and paraded it around. We provided her the opportunity to create something (with a hot glue gun, I might add) that gave her a sense of pride and independence. This hat was made last year and I am told it sits on her dresser, with every ball, flower, and sequence still intact.

We are proud of all of the growth that our Adults experience by attending Easter Seals Greater Houston’s Life Enrichment for Adults with Disabilities Day Program. We have two Adult Day Program groups, ages 18-30 and another ages 30 and up. We also serve our clients through a variety of other services. Please reach out to Lindsey Holton at LHolton@eastersealshouston.org for more information on how you and your loved ones can get involved!

Easter Seals Greater Houston, Adult Programs

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Camp Friends are the Best Friends

Dear Carolina & Juana,

Because Easter Seals Greater Houston’s Camp Smiles changed my life so much I feel I need to let you know how 4 years ago, my first year, you had to convince my mom & dad to let me come to camp at all. My parents tried to find every reason possible that I shouldn’t be allowed to come and told CAnna 3hristine & Betsy why it would be better for me to stay home. All they would say to my parents was, “No problem – we can handle it.” My mom told me she cried every day because she missed me so much the first year I was at camp – ridiculous, right?!?!

Fast forward 3 years and I’m now having to say “see you later” to my Camp Smiles family… My mom is crying for a different reason this year – she knows I have met 2 of the most important people – you two, Carolina & Juana – who have been my counselors every year I’ve been here. Both of you have helped me become more confident in who I am. You have given me a reason to be Anna 1happy every summer because I know you accept me for who I am and make me feel understood and important. You have become more like big sisters – a part of my family – more than just camp counselors. And even though I won’t be back at Camp Smiles again as a camper I’m praying our paths continue to cross forever. You are two of the most amazing people and I hope all of your dreams come true.

Thank you to every friend I’ve made and every counselor who took the time to get to know me at camp.  I’m better for having all of you in my life.  I love you all and am grateful for all of you!

Love,

Anna, Camp Smiles Camper, Easter Seals Greater Houston

Anna 2

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