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Our Easter Seals Greater Houston Transition team met Paul and his mother last June as a Hogg Foundation for Mental Health Transition Age Youth Project of Easter Seals Greater Houston/DARS client. Thanks to the Hogg Foundation, this project offers services and support for persons, ages 16 – 27, who have are on the spectrum and have a co-occurring mental illness and is designed to help youth become more independent and successful in their communities. The many facets of the program include social skills training, supported employment, summer internships, college classes at the Houston Community College VAST Academy, BCBA Services, peer supports, referral assistance, financial coaching, on-line driver’s Education and access to our mobile technology program.
Paul had just graduated from Sam Rayburn High School in Pasadena, Texas. His only work history was as a volunteer through a high school program with a couple of companies in the Pasadena area. Paul and his parents wanted him to find a part-time job with a number of specific permanents such as close to home, after 4:00 pm and Monday thru Friday. Together, Paul and his transition counselor, Robert Aranda, created a resume reflecting his volunteer experience and a reference list of his former supervisors. They met to complete on-line applications, practiced mock interviews and reviewed social skills for interviewing techniques. Paul interviewed with companies through Summer and Fall.
In December, Wal-Mart called Paul in for an interview. His Transition Counselor says he is a very likable and responsible individual and that he really wants to show his parents that he is able to expand his learning curve and become more independent. Paul’s interview at Wal-Mart was a hit with the Human Resources Department and he was hired this past December as a Cart Attendant. Wal-Mart was very accommodating with assisting Paul with the work schedule he needed. Within two months, Paul’s supervisors noted his work great ethic, enthusiasm and customer service. Paul was selected Employee of the Month for February!!
Ella has been enrolled in the Easter Seals Greater Houston ECI/Infant Program for about 6 months. Per one of the therapists on her Infant Program team – visits started with tantrums, then evolved into stoic silence. Mom swore she said about 10-15 words, but the team never heard them the first month or so. Now, this lovely chatter box has a vocabulary that is growing every day. Ella is combining words to make 2-4 word sentences on her own, and parrots everything she hears. She is able to sit and attend to learning and play activities for 30+ minutes without getting distracted, and has some of the most creative pretend play we have seen.
We have been utilizing the services of the ECI/Infant Program at Easter Seals of Greater Houston over the past year for our son Mica, who was diagnosed at birth with Trisomy 21. Mica’s progress has been wonderful so far, thanks to the team of dedicated therapists at Easter Seals. Mica’s physical therapist Charisse as well as his nutritionist Thein have been instrumental in his growth and development. His occupational therapist Christy as well as speech his therapist Bridget are working on improving his skills. My wife and I are very pleased with the team’s dedicated and professional approach in dealing with Mica. For anyone with a child with a disability in the Houston area, we highly recommend the ECI/Infant Program Easter Seals as they do a wonderful job.
The Dawkins Family:
“Thanks to Easter Seals Greater Houston’s ECI Program and wonderful staff our son, Cavani, went from no communication at all, to using words and sign language to express his needs to us. Easter Seal’s knowledgeable therapists helped our child, and our family, transition from in home therapy to a public school that meet our child’s needs. We truly can not say enough good things about Easter Seals and their ECI/Infant Therapy Program.”
– The Dawkins Family
Want more info? Info@eastersealshouston.org
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.
Easter Seals Greater Houston’s Early Childhood Intervention Program (ECI) is for children from birth to 36 months and includes a comprehensive range of services including developmental services, speech, physical and occupational therapy, nutrition, vision, hearing and case management services which are all provided in the family’s home or daycare. All of the children eligible for early intervention have a serious delay in at least one area of development or a diagnosed medical condition that places them at high risk. Effective September 1, Easter Seals Greater Houston’s ECI program will expand to serve Brazos, Burleson, Grimes, Leon, Madison, Robertson, Walker and Washington Counties. The Infant Development/ECI team will serve 1,400 children each month with countless success stories like Ja’Shawn.
Ja’Shawn is a handsome 34 month old little boy that has been in ECI since the age of 12 months. He failed his newborn hearing screening at the hospital and was born with asymmetric and abnormal pinnae, which has resulted in a severe to profound hearing loss. Since that time, he’s received Easter Seals Greater Houston’s Early Childhood Intervention services such as Occupational, Physical & Speech Therapy, Specialized Skills Training, and Case management during his enrollment. With his diagnosis, he also benefits from Auditory Impairment or AI services though the public school system. During the visit-the AI teacher, Ms. Peggy was providing therapy to him. The uniqueness of ECI’s visit shined though during their interaction. Ms. Peggy and Ja’Shawn were baking cupcakes and frosting them. Ms. Peggy explained they counted the cupcakes, labeled during the mixing, and also washed the dishes when done. These routines based interventions help Ja’Shawn learn to sign each of the tasks. For example, he signed “cookies, please”, “thank-you”, “help, please” He is able to follow 2 step directions and signs up to 3 words together. Ja’Shawn’s mom, Sabrina, also says he reads lips when other adults are not able to sign with him.
Ja’Shawn turns three soon and has been evaluated for the PPCD, preschool program for children with disabilities program with his local ISD. Sabrina is hoping he’s accepted to a special school in the district that has a signing program and ECI will help her advocate for that to ensure smooth transition of services!
If you have concerns or questions about your child’s development, please call 713.838.9050, ext. 385 and request a free developmental assessment.
The following post was written by Easter Seals Greater Houston’s longtime Early Childhood Intervention Program Community Outreach and Program Training Coordinator, Kimberly Sporrer. It shows a mere glimpse of the positive impact her hard work has had on one of countless ECI clients and families she worked with over her 21 years of dedicated service.
I met with one of my clients today, and Audrey, Liam’s mom, discussed how much progress Liam has made since being enrolled in Easter Seals Greater Houston’s Early Childhood Intervention Infant Program, commonly referred to as ECI.
Audrey reports that she is so pleased that Liam can now let her know when he is hungry instead of whining and pointing to various food items. Additionally, Mom discussed that Liam is now able to sit with the family to eat his meals. Before ECI, he would walk around the house while taking a few bites at a time, and he would throw tantrums if made to sit in his high chair. Mom said family dinners are now stress free and so enjoyable!
Mom also stated that she is grateful that she was given the strategies to create a more structured environment for Liam. She discussed that Liam’s ability to anticipate events during the day (lunch, naps, bath time, etc) results in less tantrums and a calmer demeanor.
She is excited and encouraged by the rapid pace of Liam’s progress and is looking forward to hitting new milestones soon!
Easter Seals Greater Houston’s ECI Program helps children ages birth to 36 months with disabilities and developmental delays achieve their goals in cognitive, social/emotional, communicative, adaptive and physical development. Learn more here.
Madalynn is an absolutely delightful little girl who gives a big smile to everyone she meets. Her mom, Amanda, is very pleased with Madalynn’s progress and wanted to share her story.
When she was just 10 weeks pregnant, Amanda found out her baby was going to be born with Down syndrome. Amanda researched on her own and tried to educate herself on the diagnosis. Amanda thought she was prepared, but when the diagnosis of Down syndrome was confirmed after Madalynn’s birth, she emotionally had to go through the acceptance process. She shared that the hospital staff at Texas Children’s Hospital was very helpful, educating her more about the diagnosis, and referring her to Early Childhood Intervention (ECI) of Easter Seals Greater Houston.
The assessment team came out quickly, and Madalynn began receiving ECI services at about 2 weeks old. The newborn needed OT (Occupational Therapy) due to feeding concerns. Though Amanda was worried about the feeding issues, Amanda’s biggest concern for her sweet daughter was “she was not really connected”. Madalynn was quiet and not noticing people around her. After receiving help from Easter Seals’ ECI, and following through with the therapist’s suggestions, Amanda was excited to see Madalynn begin to progress. At 2 ½ – 3 months old, Madalynn started connecting with everyone around her. Today, seeing Madalynn at about 10 months old, her mom is amazed at what she can do. Amanda admits that she initially had low expectations due to the diagnosis. After seeing what Madalynn was capable of, her mom did not want to hold her back. “I include her in our daily life no matter what it is, from the beach to the park, she is there playing with us.” Madalynn now sits well independently, gets from her back into a sitting position, uses her hands to play with various toys, is beginning to clap her hands, rolls and belly crawls to get toys she wants, gestures “up”, and babbles “baba”. Feeding issues have been resolved (love those baby rolls!), and she is eating some table foods. This quiet little baby, previously so “unconnected”, now “soaks it all in”, focuses on people, and demands their attention.
When asked about Easter Seals’ ECI, Amanda responded: “I’ve learned so much from ECI. I’ve learned tons! With my other children, I didn’t pay attention to how they moved; they just did it. ECI helped me realize how important the best ways to move are for her. That’s why she’s come so far and doing what she is today.”
As she described Madalynn, Amanda stated: “She’s gives you the biggest smile ever, just talking to her. She just brings so much joy to others. Everywhere we go, people stop to talk to her. Just gives everyone joy.” Her mom also shared the exciting news: Madalynn’s picture will be featured in the 2018 Down Syndrome Calendar.