It’s Spring – Let’s find flowers and bugs!
The Caroline School is studying flowers and insects. We love hands-on learning, going on bug hunts, learning about life cycles, and watching things grow.
Check us out Here!
I’m Emily Padora and I have been interning with Easter Seals Greater Houston for the past few months. I am supervised by Ashley Nichols, the Adult Program Director, which means I get the privilege of hanging out with these wonderful adults twice a week. Just last Saturday, I got to go bowling with a few of them! I expected it to be fun, as most things are with these guys, but it was more than just fun— it was heartwarming.
Each participant got their own lane, with accommodations based off their individual needs, to bowl for as long as their hearts desired until it was time to go. I loved seeing how happy just a simple game of bowling made the participants and enjoyed watching them make strikes, splits, or just celebrating hitting a pin. It was truly something else. I also got to speak with the mother and sister of two of our participants; they were sharing with me how much they appreciate what Easter Seals and the Adult Program has done for them and their family. The mother was almost in tears, expressing to me that most people outside of this organization and program don’t pay much attention to her boys. It makes me happy and proud to be working with an organization and program that promotes growth and encourages inclusion and individuality.
Emily Padora, Easter Seals Greater Houston Intern
1 in 762 people are born with Down syndrome and there are approximately 6,000 people with Down syndrome in greater Houston. Children and adults alike with Down syndrome are benefiting from our ECI, Caroline School, playgroups, BridgingApps, Adult Program and more. Here is just an example of one of our many success stories!
Adri’s journey continued on a smooth path as she made steady progress, gaining independence in all areas of development. She was eating a larger variety of foods (also receiving additional nutrition through her G-button), began walking independently, and using more words and phrases to communicate. At 3 years old, Adri graduated from the Easter Seals ECI (Early Childhood Intervention) program, and transitioned easily into the PPCD (Preschool Program for Children with Disabilities) class with her local school district.
As most journeys hit challenges along the way, Adri’s journey took a terrifying turn. In January 2018, Adri became very ill. Her parents made two trips to the hospital ER one weekend, where she was diagnosed with “just a stomach virus”. Her health did not improve. When at her pediatrician’s office on Monday, Adri’s left arm began jerking. Suspecting she was having seizures, Adri was transported by ambulance, for her third trip to the ER. After given numerous tests, and losing the ability to lift her left arm, Adri was taken, by ambulance, to UTMB. The EEG and MRI indicated no seizures, but her fever continued, and her condition worsened. Since no neurologist was on-site, Texas Children’s Hospital sent their ambulance to pick her up. Adri was intubated before she left in that ambulance. Once she arrived at Texas Children’s, Adri was taken straight to the ICU.
After multiple tests, on January 25th, the test results showed Adri had Adenol virus which “mimics” the flu. Children with Down Syndrome may have weakened immune systems, and Adri became susceptible to the virus. The Adenol virus triggered Moya Moya, a common, though not frequent, underlying condition sometimes present with Down Syndrome. Moya Moya caused progressing restricted blood flow to the brain, depriving certain areas of the brain of oxygen and glucose. The MRA and MRB tests revealed Adri suffered a massive stroke to the right side of her brain. Adri lost the use of her left side of her body – she was unable to use her left leg, left arm, and left hand. Her speech was also affected. Adri began rehab therapy, to regain strength, and use of the left side of her body. During her month-long stay at Texas Children’s Hospital, Adri also had brain surgery on February 19th. The neurosurgeon tried to create new blood vessels on the right side of her brain. Her parents endured this traumatic time through their faith, and support from family and friends. As her mom stated, “We had a lot of people praying for her.” Adri was discharged on March 8th. In order to regain her strength, and focus on recovery from her stroke, Adri stayed home from school and began receiving out-patient therapy. She had OT (Occupational Therapy) and Speech Therapy two times per week, and PT (Physical Therapy) one time per week.
Last August, with the start of a new school year, Adri began the next phase of her journey. Today, she walks independently again (with a slight drag of her left foot), feeds herself a variety of food (still receiving additional nutrition from her G-button with 4 feedings a day), uses 3-4 word sentences to communicate what she wants, uses her left hand as a “helper hand”, and knows her letters, most shapes and colors, and counts to 20. Her dad commented Adri has had a strong will, even from birth, and is “feisty”, which helped her recover. She has surprised her therapists with how well she is doing. Adri attends PPCD Monday through Friday from 8:25-11:55 am, and receives out-patient therapy two times per week. Mom reported Adri loves riding the bus home from school, and enjoys “tooting the horn” to let mom know she’s home. Adri loves to sing, dance, and watch YouTube videos. Her mom added she’s “very funny”. Adri has fun with hats, dressing up, and looking in the mirror. She comes up with new words and sentences every day. Adri greets people, says what she wants, and still gives amazing hugs! On her last brain angiogram in the Fall of 2018, the neurosurgeon stated the brain image now shows “no stroke”, and the medical team can’t explain it.
To really come home with a child with Down syndrome….well, one of the most unexpected things in our lives. We all cried. To receive help from Easter Seals Infant Program was great! Really was a tremendous help. At first, we thought we were all alone with this. The ECI staff became like family. They didn’t just do their sessions. They listened to what we needed. Therapists recommended what Adri needed, then helped us resource it. We really miss them. They were a big time help with her progress and almost entirely the reason Adri was school-ready for PPCD.
Adri’s dad said he wanted to offer this advice to parents of children with Down syndrome: “Pack your patience. Really take time to get to know your child.” That is sound advice for parents of all children. Adri’s parents’ high expectations for Adri have enabled her to progress in her development, recover from a massive stroke, and look forward to the next steps of her continuing journey.
Sharon Mott, EIS/Transition and Outreach Coordinator, Easter Seals Greater Houston
We 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 a 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 a 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.
Lastly, 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.
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.
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 firstname.lastname@example.org.
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 Christine & 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 happy 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!