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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Service Dogs are Veterans’ Best Friend

IMG_3718This blog post comes Marjorie who is the wife of a veteran, Tom, who participates in Easter Seals Greater Houston’s veteran’s mental health program as well as the service dog program.  Marjorie is a staff member and she and Tom are the amazing parents of two daughters. Their young girls were both adopted and born with disabilities. They are an absolutely amazing family.

Norman and Tom 1“Norman is one of Easter Seals Greater Houston’s most recent service dog pairings. He is a labrador retriever and was born on Christmas day in 2016. It wasn’t until he joined our family in February 2017 that we realized what a gift he would be to all of us.  As the wife I was ever hopeful that he would be able to help my veteran husband with managing his post traumatic stress disorder.  In June 2017, Norman became an integral part of our family when my husband, Tom,  got sick.  We picked up Norman from additional service dog training as soon as Tom got out of the hospital. Norman comforted Tom and their bond grew even more.  As the training continued, Norman became more helpful even as a puppy in training.  When Harvey hit there were many helicopters flying overhead which triggered severe PTSD and anxiety, Norman was alerting Tom as his anxiety increased.  He helped Tom manage his PTSD and helped me to be more aware of when Tom was having a hard time even in dire circumstances.  For that I am forever grateful. I do not know what the outcome would have been during this extremely stressful time without Norman.

Norman Reichard puppyWe have also had an unexpected result of having Norman in our family.  Our 5 year old daughter with special needs and also a client of Easter Seals has a tendency to “wander off”.  Norman, as apparently his secondary job, will alert us immediately if she goes too far.   He never barks unless she has gone beyond a boundary that he seems to know instinctively.

Norman and Tom 2In November, Norman became a certified service dog having completed all his training.  He and Tom are a true team now.  You will not see Tom without Norman.   I will forever be grateful for Easter Seals Greater Houston giving my husband more freedom from his PTSD symptoms and for his help with our daughter as well.”

Marjorie, Wife of Veteran in Veteran’s Program, 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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Interviewing for the Future

Being a good interviewer is a skill we should all have. I got my first job slicing meats and scooping salads in our grocery store’s deli, but I imagine that’s only because my dad worked there. I was hardly interview ready and showed up wearing jeans. Luckily practice makes perfect and throughout the years I’ve gained the skills necessary to feel confident when I sit across from the person who may or may not make it possible for me to pay my bills. But, teenagers are often terrified of the idea of an interview just as I had once been.HSHT MID 2017-19

Interviewing skills, resume writing, soft skills, and professionalism are all heavily covered topics in Easter Seals Greater Houston’s High School/High Tech and Ready to Achieve Mentoring Program (RAMP) classes. We want our students to ace any interview they walk in to and that takes a lot of practice. Leading up to our annual Mock Interview Day, we talk about what they should wear and how they should answer popular interview questions as well as why they should smile, make eye contact, and have good firm handshakes. We do everything we can to prepare our youth and they usually seem ready to go but inevitably, when they line up in the hallway to begin the first of their three short mock interviews, the panic sets in. I can understand why – our volunteer interviewers are very professionally dressed, sitting tall and stoic in their seats and it immediately makes all of the students doubt their skills and forget everything we taught them. However, over the course of the day, something really great happens. You can see these young people feel confident and proud of themselves. They leave their first interview with a grade sheet that usually tells the same tale – they did well, but have a few things they need to work on. At the second interview, they’ve worked on these shortcomings and did a pretty good job! By their third, they’re old pros comparing near perfect scores with each other in the hallway. Watching a young person believe they can do something well is pretty amazing.

HSHT MID 2017-45This year, Carmen Phillips, the newest member of Easter Seals Greater Houston’s High School/High Tech team, hosted her own Mock Interview Day and included a fun new activity that got students talking with each other and moving around. By making each student their own business cards to share and use for networking with other students, Carmen was able to make every student social. Even the most shy or reserved students made an effort to network with others and talk about themselves in between mock interviews. This was a fun new mock interview day inclusion that we will be using every year to get our youth excited about sharing what they know with other people.

HSHT MID 2017-05Yvonne Kelly and I enjoyed watching students at our Mock Interview Day in League City cut each other in line to be able to do their second or third interviews before one another because they had gotten such great scores and couldn’t wait to do it again! We had a funny and boisterous group this year and they made the day so fun.

Watching all of our youth participate, feel accomplished, and actually be excited about interviewing is such a reward for us as each Mock Interview Day ends. We can’t wait to see what next year brings as we prepare our students for their transition out of high school and into the world of college and work!

Jacquie Privitera Miller, RAMP and Transition Coordinator, Easter Seals Greater Houston

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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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