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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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A Family’s Journey

Holding on tightly to their faith, Adrianna’s parentsIMG_4592 describe their life with her as a journey.  Adrianna, known as Adri, was born with Down Syndrome. Receiving the diagnosis of Down Syndrome for their youngest daughter was, at first, a shock and hard to process.  They were given encouragement from the doctors at the hospital after she was born, as well as pamphlets and other helpful information to read.  The hospital referred Adri to Easter Seals Greater Houston’s Early Childhood Intervention, discharged her from the hospital, and their journey began.

IMG_4594Not far into their journey, Adri’s “bad gag reflex” created the parents’ first real scare.  She was just 3 months old.  After feeding her, mom put Adri in her swing, the Early Childhood Intervention (ECI) evaluation team arrived, and Adri began gagging.  As mom reported, “I thought she was going to die!”  Due to the gag reflex, mom and dad learned Adri needed to be perfectly still at least 30-45 minutes after she ate, which affected what they were able to do as a family.  They couldn’t drive anywhere with her after feedings.  This lasted a few more months, then the formula was changed, she became bigger, and she outgrew that reflex.  Their second scare came not long after the first scare.  At 4:00 one morning, Adri’s G-button popped out and Adri was taken to the ER.  She came home from the hospital with a foley, and then it migrated into her intestines.  She went back to the ER, taken to surgery, and the foley was replaced with a G-tube…then it popped out, and she went back again to surgery.  As dad stated, “We’re pros now and can replace that button as long as we catch it early.”

Though their journey has had many ups and downs,IMG_4595 Adri has continued to blossom, and progress in all areas of development.  Described as very friendly, Adri has a smile for everyone she meets, waves, and says “hi”.  When she wants something, Adri communicates using gestures, signs and some single words.  Her love for the outdoors prompts her to go to the door, knock, and point.  Adri thrives on social attention.  She gives amazing hugs and takes hold of people’s hands as she sings her favorite songs with them.  Mom and dad report she sings along at church, too, and enjoys the other children there.  Adri receives some food through her G-button, but now eats a variety of foods.  She’s exploring more textures of foods, and feeds herself her favorite Cheetos puff snack.  To move around her home and explore outside, Adri walks behind a push toy.  During her time with ECI of Easter Seals, Adri has been receiving Occupational Therapy, Physical Therapy, Speech Therapy, SST, and case management.  The team works closely with her parents as they’re now working on more independence in walking, feeding, and using more words.

When asked about their experience with ECI of Easter Seals Greater Houston, both parents commented:

IMG_4596“We didn’t have a clue; how will we manage this?  With prayer, encouragement from friends, and help from ECI, she’s made so much progress!  ECI has been a great help and we’ve gained a lot of experience from them.  This has been a long road, but it’s helped her get where she is now.   She’s now independent, gotten stronger.  We’re looking forward to the next steps.” 

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.

Sharon Mott, EIS/Transition and Outreach Coordinator, Easter Seals Greater Houston

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Caring for the Caregiver

The following was written by the parents of one of our beloved clients that have participated in Easter Seals Greater Houston’s Family Day Out and Respite Voucher programs for many years.

Family Day Out is a center-based Respite service 20171007_102818that provides respite care on Saturdays to families of children ages 6-14 with all types of disabilities. Our son, Brandon, and the other children benefit from arts and crafts, games, and playground activities and receive one-on-one assistance from volunteers. As parents we benefit greatly with much needed time to get caught up on anything we may need to get done (paperwork, house work …the list goes on) or even have a much needed day date! (Dates are far and in between!) Family Day Out also gives us much needed one-on-one time with our daughter. Children that have siblings with disabilities often don’t get as much attention due to the high demand kids with disabilities require. It’s a great opportunity to spend quality time with siblings.

What we love most about Family Day Out is that our son is able to spend time with volunteers, staff, and friends that over the years have gotten to know and love him.  Each session is also staffed by a nurse and a center director. It’s somewhere he feels 100% accepted and has tons of fun.

20161203_114712We are so grateful to have been able to look forward to at least one Saturday several months a year that Brandon will be well taken care of while having fun so we can have time to ourselves, guilt-free. This September will be a sad one since the Family Day Out program is only able to accommodate kids through 14 years old at this time and Brandon turns 15 at the end of September.

We also participate in Easter Seals’ Respite Voucher Program which allows us to select our own childcare provider for in-home care. These hours allow us to run errands and take a much-needed break while Brandon is with someone we know and trust to care for him. As Brandon has gotten older the respite hours to use at our leisure have become as much of a blessing as Family Day Out. Qualified sitters (those who can handle meltdowns, behavior issues, etc.) for children with disabilities have a much higher rate than typical sitters so the respite hour vouchers help tremendously when funds are already tight.

Easter Seals Greater Houston’s 20171007_130244

Family Day Out program and Respite Voucher program are truly blessings to ours and so many other families!

Thank you,

Jeff and Tiffany, Respite client parents, Easter Seals Greater Houston

Learn more about Easter Seals’ Care Giving Services.

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Thank You to The Woodlands Children’s Museum

IMG_9003The Woodlands Children’s Museum is a very generous community partner with the ECI (Early Childhood Intervention) Infant Program of Easter Seals Greater Houston.  Beginning in September, the museum has offered classroom space for ECI to conduct group sessions for some of the children receiving ECI services.  The group meets one hour, one morning each week.  Typically, four to six children attend group.  One parent attends group with his/her child to offer support, and to observe strategies the family can also use at home.  Each group session is led by an EIS (Early Intervention Specialist) and an SLP (Speech Language Pathologist).  School readiness and communication skills are the goals of the group, preparing the children for community preschools they may attend after they graduate from ECI at 3 years old.  The purpose of group services is to encourage children to attend, participate, and interact with peers and adults to promote successful transition into school.  The EIS and SLP help develop these skills through a variety of hands-on play activities.  As Abraham Maslow states, “Almost all creativity involves purposeful play”.

Themes for the group activities change each month.  The theme is usually related to a children’s book such as Brown Bear, Brown Bear, What Do You See?; There was an Old Lady Who Swallowed a Fly; and The Very Hungry Caterpillar.  Activities may include interacting with books and songs, movement activities, exploring various textures through play, art, and snacks, and participating in social play with their classmates.

By offering this classroom space, the museum gives IMG_9001children the opportunity to learn in a group setting, which may help them transition easier into preschool.  “Children understand and remember concepts best when they learn from direct personal experience.” (Joseph Cornell)  This partnership demonstrates community agencies working together for the benefit of children, and enhancing their development.  ECI of Easter Seals Greater Houston is very grateful for the opportunity to collaborate with The Woodlands Children’s Museum and we hope this community partnership can continue in the future.

Sharon Mott, Early Childhood Intervention Infant Program Transition and Outreach Coordinator, Easter Seals Greater Houston

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Loving. Growing. Advocating.

Chelsea is a 22 month old Easter Seals Greater Houston client Chelsea L pic (5)who was born with a very rare gene disorder, GATAD2B syndrome, which results in the “loss of function”. There are approximately only 11 cases known worldwide.  Characteristics of this disorder affect all areas of development from cognitive delay, low muscle tone, speech and feeding delays to sensory processing delays.

Chelsea has been in the Easter Seals Greater Houston Early Childhood Intervention Infant Program  (ECI) for the past 14 months.  She receives physical and occupational therapy along with specialized skill training.  Chelsea lives at home with her Mom, Brittany, her Dad, Cody, and her 3 year old big brother, Bradley. With the help of ECI therapists and family support Chelsea has made huge strides over the past 14 months. Mom stated “When we first started ECI services Chelsea was 8 months old she could not even hold her head up.  I couldn’t carry her like a typical baby. ECI has helped Chelsea development in ways I never knew possible.”  Chelsea is currently able to roll, sit on her own for extended period of time, hold her own bottle, beginning to finger feed herself and is able to stand at her couch with supervision to interact with her big brother! Mom stated “I’m more confident now that ECI providers have taught me the skills to help Chelsea’s development.  With the help of ECI my daughter is coming along great!”

Chelsea Linn 2 (1)Chelsea’s Early Childhood Intervention therapist shares that Brittany has become a huge advocate for her daughter and others who have been diagnosed with GATAD2B syndrome. Brittany has even traveled to Austin to encourage funding for this extremely rare gene disorder. Brittany is a true example of the power of a parent who advocates for their child!

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

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Chaos and Trauma for a Family with a Child with Special Needs

reat_familykevinjohnson-4.jpgThe following story was written by BridgingApps’ Co-Founder, Cristen. Cristen and her son Vincent, who has special needs, were Easter Seals Greater Houston’s Walk With Me 2017 Ambassadors and have been dear friends of Easter Seals Greater Houston for years. Cristen graciously shared her story to show how having a loved one with a disability compounded the difficulty and stress faced during Hurricane Harvey.

 

Our house was built in 1955 and has never flooded. We typically have a modest hurricane and emergency kit prepared during Hurricane season. During Hurricanes Katrina, Rita, and Ike, I evacuated with both my sons, while my husband stayed to prepare and salvage the house.  As Harvey moved closer, we decided that this time we would not evacuate, but would shelter in place.

You see, my 14 year old son, Vincent, who has Down syndrome, a visualVincent-and-Cristen impairment and extreme sensory issues, generally is a good traveler, but sometimes he has difficulties with transitions. As he has gotten older, he has also gotten more opinionated, making an evacuation less desirable. This time, I made sure that we had enough medications, water and food.

However, we were not prepared for the amount of rain that kept coming and coming. We lost power in the middle of the night on Saturday. Our home is located 3 blocks from Brays Bayou, and we watched the water rise, then crest, then continue to rise on our street, and then in our yard. Most of the homes in our neighborhood are one story homes, and we could see our neighbors begin to flood. The water came into our garage, and we thought it was not long before it would come into our home. We decided to evacuate our home and go to a neighbor that was higher two blocks away.

In the span of about 30 minutes with zero planning, we threw important papers, picture albums and some clothing into our attic. We scrambled to get all of Vincent’s medications, shoes with orthotics, two pairs of different prescription glasses, incontinence supplies, and two days’ worth of clothing into backpacks and garbage bags. We attempted to save his $1500 adaptive stroller by throwing it on top of our car, because we knew it would take forever to get approval for another one.

My 17 year old son Martin volunteered to carry my 80 pound son Vincent to our neighbor’s house. My husband and I carried everything else. It was a challenge to explain to Vincent, who has a cognitive disability, that we needed to put on his raincoat and walk out in the pouring rain into water that was nearly waist deep on his brother’s back. My goal was to do it in a lighthearted way, but my voice broke, and it became impossible. Tears were streaming down my face, so I was glad for the rain to camouflage this awful fear in front of my children.

As we plunged into the cold water, it was amazing how small things like the sidewalk, bricks, tree roots, curbs and other small obstacles became huge obstacles, causing Martin to stumble, trip, and nearly drop Vincent multiple times. The truth is that if they fell and he went under water, the current was so strong, I am not sure that we would have found him.  It was hard for Vincent to see out of his glasses with the rain coming down, and it must have been terrifying for him. His preferred spot in life is on the floor, as it is predictable, steady and safe.

Martin had to rest, so we got to the front porch of a house at the intersection of our street. As we rested there, we saw people chest high in water carrying their dog. We had no idea where they were trying to go, and I am not sure they did either. At that moment, we saw a kayak two houses away. My husband got their attention, and it turns out they a couple in their 70s and offered to take us one by one to our friend on the next block who was on higher ground.  It was a given that Vincent would go first, so I had to explain to him that he needed to get into a “special boat” with complete strangers to get to our friend Carolyn’s house. As we maneuvered him into the unsteady kayak, he slowly sat on the lap of a woman named Diane. I kissed him and told him that I would see him in a few minutes. I simply could not believe how strong the current was, swiftly rushing towards Brays Bayou, as the kayak had to navigate across the intersection with my most vulnerable child.  I watched helplessly and had to trust that he would be ok.

It was at that moment that I broke down and had what I imagine was a FULL ON panic attack. I was unable to breathe and nearly fell down. My sweet husband Daniel, thought I was having an asthma attack and asked where my inhaler was.  In the pouring rain, in the middle of a swift river of water I wanted to smack him for not realizing that I was having a PANIC attack, not an asthma attack.

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It seemed like FOREVER when the kayak returned reporting that they had safely deposited Vincent at our friend Carolyn’s house.  One by one the rest of us were ferried to her house, where we waited out the rest of the day and night of continuous rain and no power.

On Monday, when the water had receded enough, we returned to our house and watched the news that the forecast showed nothing but rain. Though Brays Bayou had gone down its banks a bit, with the power back on in our house, the weather reports were nothing but rain and prediction that Brays was going to crest again.  We immediately decided to evacuate a second time to another friend’s house about 2 miles north of our home. This decision was based completely on the best place for Vincent. We determined where we would go based on which friends of ours had not flooded yet, did not have a cat (allergies), and had enough room where Vincent could have his own space because of his sensory issues.

We returned to our house on Wednesday to begin the clean-up and on Saturday had to be evacuated AGAIN because of a bad gas leak in our yard.  We hadn’t even unpacked from the 2nd evacuation, so it seemed to be easier than the other two, but we as a family were nearly at a breaking point emotionally.  Vincent’s daily schedule is predictable, planned out and communicated to him to reduce his anxiety. The previous 7 days had been everything but predictable. It was emotional, stressful, unpredictable, and frustrating.  For most families dealing with this hurricane was horrific, but for our family with a child who has cognitive and sensory issues, it was tremendously difficult.  Luckily our house sustained only minor damage, but the toll it has taken on our whole family will take weeks to recover.  It has changed the way I will prepare for disasters, and it will change forever the way that we discuss it with our children.

Cristen Reat, Parent and BridgingApps Co-Founder, Easter Seals Greater Houston

As of today, thousands have been begun to receive direct client services as well as clothing, medical equipment, and assistance from Easter Seals Greater Houston. These families have been through a major trauma; please donate to help us meet their needs.If you or someone you know needs assistance, please contact us at Harvey@eastersealshouston.org. If you or your company would like to partner with Easter Seals, please contact us at Info@eastersealshouston.org.

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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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