Tag Archives: family

Intensive Therapy, Incredible Results

image1The following was written by the mother of one of our beloved clients that has participated and thrived in Easter Seals Greater Houston’s Children’s Therapy Program.

My daughter, Aubrey, is six years old and has a very rare and recently diagnosed neurological disease (DNM1 Gene Mutation). She has been enrolled in Easter Seals Greater Houston’s Children’s Therapy Program for two years. We were introduced to Easter Seals Greater Houston through the Intensive Physical Therapy program. Before we started attending therapy, Aubrey could not sit unattended for more than a minute and she could not bear weight on her legs. After working with her physical therapist, Melissa Dafler, multiple days a week for multiple hours a day Aubrey made phenomenal progress. Melissa worked with Aubrey using the Therasuit technique. Aubrey can now maintain weight on her legs and she can take steps with assistance. She can also sit on her own for as long as an hour. We have continued weekly physical therapy and added occupational and speech therapy to Aubrey’s schedule.

image3The Easter Seals Greater Houston staff has helped Aubrey grow and develop in ways that we may have thought impossible five years ago. Aubrey’s doctors and teachers have been amazed with Aubrey’s progress and we attribute her success to the skilled and professional staff at Easter Seals Greater Houston’s Children’s Therapy services. We look forward to all the growth she will continue to experience with the care and expertise of Easter Seals’ physical, occupational and speech therapists.

Angela, Children’s Therapy Program client parent, Easter Seals Greater Houston

Easter Seals’ Children’s Therapy Program is designed to help children live, learn, work and play through our physical, occupational and speech therapy services. Each of it’s dedicated therapists has specialized training and experience in working with children to promote growth and development. The goal of the program is to allow the child to be as independent as possible and participate in family, school, and community activities. Children’s Therapy Program believes in and practices family inclusion in therapy so that our parents can translate more therapy into their daily living when they are not with us. We help children PLAY! To refer a child, or for further information, please email us at therapy@eastersealshouston.org or call 713-838-9050 ext. 381.

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Therapists: True Friends and Advocates

The following blog was written by the father of Anna, an Early Childhood Intervention graduate. Mr. Joshua David English eloquently shares the deep impact that ECI has had on his daughter, himself, and his entire family.

In late summer 2014, my youngest daughter, Anna T. English, was prenatally diagnosed with Down Syndrome.  Down Syndrome is a genetic disorder caused by the presence of a third copy of chromosome 21.   It is typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.  It affects all ethnicities, genders, and economic classes.

Anna English ECI GraduateAs my wife and I educated ourselves on our child’s diagnosis we quickly learned that while the syndrome has a wide range of symptoms, the key factor in mitigating most, if not all, is early intervention.  Within weeks of Anna’s birth our pediatrician encouraged us to contact the local Early Childhood Intervention program office (Easter Seals Greater Houston) to request services.  In Texas, the ECI program falls within the Texas Health and Human Services Commission and is available to children from birth to three years of age.  Texas’ ECI program receives funding from several sources, including funds appropriated to the Department of Assistive and Rehabilitative Services (DARS) and the Health and Human Services Commission (HHSC), and funding outside of the General Appropriations Act (GAA).  Without programs such as ECI, millions of disabled children in America would go without the necessary treatments.

Soon after contacting Easter Seals Greater Houston we were assigned an intervention specialist and over the course of my daughter’s first three years of life we have been privileged to receive services from dedicated and professional therapists.  We were continually impressed with each therapist that worked with Anna, and with Anna’s progress.  She quickly broke typical notions of what a child with her diagnosis was capable of and continually made progress that shocked even her mother and I.   Without programs like ECI and the steadfast dedication of these professionals, my daughter would not be as high functioning as she is today.  While there have been many therapists assigned to our case, we wish to highlight the below individuals.

Ms. Britni Smith, Early Intervention Specialist – Ms. Smith was the first to visit our home and helped establish goals for our barely one month old daughter to achieve.  She was extremely professional, well versed in the types of services our daughter needed and has been with us throughout our eligibility in the program, ensuring the right services are provided at the right time.  My wife and I cannot speak highly enough of Ms. Smith and are so thankful a person of her talents chose to serve children with disabilities.

Ms. Jeanie Martinez, DPT –  Ms. Martinez is warm, passionate, and has aggressively pursued every goal we set for Anna.  She pushed Anna hard when it comes to her physical therapy and that’s what I wanted.  She has been a true partner in Anna’s development and will always be remembered for not only educating Anna, but my wife and I as well.

Ms. Elizabeth Clark, SLP – Ms. Clark came to us late but made a marked improvement in Anna’s development.  She helped my wife and I locate a local mother’s day out program that has begun accepting children with special needs.  Her dedication to Anna’s well being, development, and as a friend will always be remembered.

Ms. Morgan Cooke, SLP – Ms. Cooke came to us even later then Ms. Clark, but has already made a marked improvement in Anna’s speech development.  She often provides us easy to use tips and tricks to help Anna between therapy sessions.  This approach provides us the tools we need as parents to help Anna grow. 

Lisa Rand, COTA –Ms. Rand has been a partner from the beginning. She always has Anna’s best interests at heart and brings thoughtful, and creative ideas to further Anna’s development.  Ms. Rand is warm, genuinely caring and personable and we value her.

Anna greets each therapist with a smile and a wave and intently plays with each.  They serve as more than medical service provider, they have become true friends and members of our extended family.  As we age out of ECI and enter a new program I would be remiss if I did not attempt to impress upon you the importance of these type of programs.  Other affected citizens, my extended family, and I strongly encourage you to continue funding programs like Early Childhood Intervention and to support legislation like the Achieving a Better Life Experience (ABLE) Act, and the Individuals with Disabilities Education Act (IDEA), Part C to ensure those with disabilities in our country have the voice they so deserve.

Enclosed you will find a picture of Anna on her first day of pre-school this year.  So proud of herself for carrying her water bottle and too proud to let go of the art project she completed and would later give to her grandmother.  I cannot thank the overall ECI program, Easter Seals Greater Houston, or the individual therapists enough for what they have done for my daughter, my family, and I.

With hope for the future of disabled children in America,

Very Respectfully,

Mr. Joshua David English and Ms. Alice Kim Dang

Parents of Early Childhood Intervention Graduate, 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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Incredible Eira

Eira BandaEira is a beautiful little girl that has been in Easter Seals Greater Houston’s Early Childhood Intervention (ECI) Infant Program since the age of 4 months. She was born with Down Syndrome and was hospitalized in the NICU for the first 3 months of her life. After being discharged, the hospital immediately referred her to Easter Seals’ ECI Program. Since that time, she’s received every ECI service from Occupational, Physical & Speech Therapy, Specialized Skills Training, Nutrition and Case management during her enrollment.

Eira’s Mom, Angelica said “Eira has learned so much from ECI. She’s received so many therapy services over the years. Walking was hard for her because she had such low tone and her legs bowed out. The physical therapist helped us with exercises”. The case manager, Christina Weiblen, said “Mom would always ask us when she was going to walk, would she walk?” Now Angelica says “I’m waiting for her to sit still! She’s climbing up and down on the table and moves around so fast!” The proud mom also shares that “She absorbs everything she sees and learns that way. She loves my phone and has learned how to open and close apps.  She’s a whiz!”

Eira Banda 2Eira turns three soon and has been evaluated for the PPCD, preschool program for children with disabilities program with her local independent school district. The case manager is also helping Angelica explore private therapy options and other play groups.  Through case management she is also on several wait lists such as HCS, MDCP and CLASS to ensure future support and services for Eira.

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.

Early Childhood Intervention Infant Program Team, Easter Seals Greater Houston

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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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