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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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Countless Success and Growing

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 littleJeShawn Blocks 1 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.

JeShawn 1Ja’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.

Early Childhood Intervention, Easter Seals Greater Houston

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Appreciating Family Dinner

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.

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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 infant pic 2strategies 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!

Kimberly Sporrer, Early Childhood Intervention Infant Program, Easter Seals Greater Houston

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.

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Pretty Eyes, Chubby Thighs

baby4Madalynn 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.

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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.baby

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.”baby3

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.

Amanda, Early Childhood Intervention Client Parent, Easter Seals Greater Houston

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Free Summertime Fun!

Are you looking for ways to get your children involved this Summer? Come and join one of our fun Play Groups! Our Play Groups are free and offered on Tuesday evenings (with the exception of Play-A-Palooza) at our Easter Seals main office.

Karate– Through participation in this class, IMG_3928your child will learn balance and self-control through various drills and independent lessons. These practices include training in martial arts etiquette, respect for authority and self-esteem. Using a goal setting martial arts curriculum, participants gain confidence through repetition, guidance, and praise. Karate is open to ages 6 to 18 years old. Karate is on the 2nd and 4th Tuesdays of the month from 6:00pm to 6:45pm.

 

Yoga– Yoga emphasizes stretching and breathing techniques designed to enhance development. Teachers reinforce memory, independence, and group focus! Yoga is open to ages 4 to 18 years old. Yoga is on the 2nd and 4th Tuesdays of the month from 6:50pm to 7:35pm.

Dance– Our dancers dance, prance, and play group blog photo 3imagine what to do with a scarf – all the while not realizing that they are focusing, following directions, and using their imaginations. Dance is on the 3rd Tuesday of the month from 6:30pm to 7:15pm

 

Teen Night –Teen Night is open to teens ages 14 and up with a primary diagnosis of cerebral palsy or a similar neurological disorder with a developmental age of at least a 12-year-old. They must understand topics discussed relevant to the 12-18 year old age group. Our Teens will have an opportunity to socialize, play games, and attend a Jam Session! Teen Night is held the 1st Tuesday of every month from 6:00pm to 7:30pm.

Pet Therapy –Clients will get the opportunity to playplay group blog photo 2 with our pet therapy dogs, see tricks, and enjoy their furry company! All ages are welcome. Pet Therapy will be on the 3rd Tuesday of every month from 5:30pm to 6:30pm.

Play-A-Palooza – Our adapted Play-A-Palooza play group incorporates play and music to build cognitive and physical skills (for ages 0-5 years old). Play-A-Palooza in Stafford is held on the 1st and 3rd Thursdays of the month from 10:30am to 11:20am. The Stafford location is 12300 Parc Crest Dr. Stafford, TX 77477.

To be added to our Easter Seals Greater Houston Play Group Database to receive weekly updates, please contact Lindsey Holton at 713-838-9050 x 309 or at lholton@eastersealshouston.org

For more information on our Play Groups please visit us at www.eastersealshouston.org

Lindsey Holton, Easter Seals Greater Houston, Program Director

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Exceptional Kids Deserve an Exceptional Education

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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.

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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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Relax, Recharge, Feel Refreshed

Thanks to Easter Seals Greater Houston and Hilton Hotel of America, Downtown Houston – my husband and I enjoyed the gift of time together and a break from home, where we could recharge ourselves. Living in a disabled family, although rewarding, is full of extreme ups and downs that can be excessively stressful at times. Around the clock duty as a care taker to our adult son with autism and co-occurring disabilities means that time away is a chance to unwind, have some much needed down time and also return ready to take on another day. We really appreciated that Easter Seals Greater Houston Respite Program gives us the chance to get away from home, but be close enough in case of emergencies. We enjoyed our trip to The Houston Galleria to prepare for the holidays and were spoiled with deliciously prepared breakfasts.

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Easter Seals Greater Houston has been a constant support in our lives for our son. Not only with the Respite Program, but when he was younger and attended Family Day Out on Saturdays once a month and of course the much anticipated Camp Buckaroo in the summer. Before the location in The Woodlands started, we would drive over an hour each way into Houston for camp, it was worth the chance to have our son engaged and stimulated in a safe environment for a few days during the summer break.

Thank you for the opportunity to enjoy this time especially during the hectic holiday season. We were so happy and care free for a couple of days – and this opportunity could not have come at a more needed time.

We appreciate Easter Seals Greater Houston, love the Hilton of Americas and are thankful for all you do for the disabled community and care takers.

Thank you,

Nicole and Darrel, Respite Services clients, Easter Seals Greater Houston

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