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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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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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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.

infant pic 1

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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The SMART Road To Assistive Tech for ALL

In 2010, I was working at an educational non-profit when I helped to start a support group of parents and therapists where we shared information on how smartphones and touch tablets could help children with disabilities improve developmental skills. I was interested in how technology could help my youngest son Vincent, who at the age of 6 had the fine motor skills of an 18 month old. I knew that he would never write with a pen and paper, but I also knew that technology could play a big role in his early education and throughout his life.

Vincent had tried joysticks and other technology prior to the tablet to write and communicate, but he needed hand over hand assistance to operate them. However, with the iPad he was able to navigate independently. What a boost to his confidence and an ease to his frustration!

Other parents and therapists had similar thoughts but, because this mobile technology was so new, we spent hours exploring possibilities of which apps were the most helpful for our kids. We were overwhelmed by the sheer number of apps available, so we set out to find a way to make searching easier for parents and professionals. That support group and quest for solutions turned into BridgingApps, a website and program of Easter Seals Greater Houston.

Becoming part of Easter Seals Greater Houston has been a blessing in the most profound way for this program and for our family. With the help of Easter Seals’ leadership and vision to help the program grow as quickly as possible, we have been able to make great strides in its’ development and reach. In 2014, BridgingApps won the Verizon Powerful Answers Award for Education that came with a $700,000 prize.  Our website is filled with resources for people of all ages and abilities – parents, caregivers, therapists, doctors and people with disabilities – looking for the right apps to fit their needs.

We now have three assistive technology labs (Thanks to The George Foundation and ATT&T) in the Houston area and satellite support groups in Austin, the Rio Grande Valley and Fort Worth, Texas.  In 2016, we gave more than 55 presentations and trainings in Houston and around the country. Our website enjoys 9,000 registered users from 187 countries, 7,000 monthly visitors, a podcast segment, an online course, a regular column in a digital magazine, and 3,500 apps in our database. We are excited to explore new ways in which mobile technology can assist young adults with special health care needs, older adults, and seniors through collaborative projects with Texas Children’s Hospital, TIRR Memorial Hermann, Amerigroup/Anthem, UnitedHealthcare, and others.

As a veteran of the US Army, I am thrilled and honored this year to be working on a project that provides services and mental health supports to veterans and their families by using technology. Through a generous grant from TV+FA, we are able to provide technology training in different formats to veterans and their family members.  This spring we have already provided 10 Veterans Access Cafes in locations around Houston to demonstrate how smartphones can be used as a mental health support with apps like Calm, Swirlicity, and Stay Quit Coach. We continue to add content each week to www.bridgingapps.org/veteransresource  to share information on apps and other technologies that benefit veterans and their families.

Cristen Reat, Easter Seals Greater Houston, BridgingApps Founder

 

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“Ideas Worth Spreading” …Corporations & Communities Supporting Veterans

If you’ve watched one of the viral TED talk videos on YouTube, you know their tag line is “Ideas Worth Spreading.” At Easter Seals of Greater Houston, we also think we have ideas worth spreading and ours are focused on collaboration. Being the recipient of a 2016 Texas Veteran + Family Alliance (TV + FA) grant, our goal is to improve the quality of life for Texas Veterans and their families. By working hand in hand with proven Veteran Service Organizations, we are able to have an exponential impact on the community.

We decided to have two large Convenings that would allow us to improve the communication and collaboration of mental health and supportive service in the greater Houston area. Our first convening included Veteran Service Organizations, Mental Health professionals, Veterans and Corporate Partners. This diverse group was chosen so we could demonstrate to all the groups how each one was a vital part of the solution. The event featured an amazing singer for the anthem, Game Show style vignettes to introduce language and culture, break-out sessions that included using technology and apps, features for our partners, nationally recognized speaker COL (ret) David Sutherland of The Dixon Center and a catered lunch.

The feedback has been overwhelmingly positive and there have only been two looming questions for Easter Seals of Greater Houston: When is the next one and can we make the event longer? It seems we have found some great ideas worth sharing and we are truly changing the way that everyone views mental health and veterans services. Our next Convening will be June 13th at Combined Arms.  We invite all greater Houston corporations and businesses interested in supporting veterans to join us at the Convening and learn how hiring Veterans could be amazing for your business!  Please contact Tim Stroud at TStroud@eastersealshouston.org or 713-838-9050 for more information.

Tim Stroud, Easter Seals Greater Houston, Veteran Initiative Coordinator

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Make Our Veterans Program Part of Your Unit

Usually I write about a person who was helped by the services I provide through Easter Seals Greater Houston’s Veterans Program. This time I’m going to do that with a twist, so let me tell you the story. Years ago I met a Marine and after this initial meeting our paths diverged for a long time. About a year ago, our paths crossed again at a Marine Corps birthday celebration in Houston and I learned he was a County Veterans Service Officer. After catching up we discovered that we both worked in the Veteran community to reduce the stigma around mental health, providing services to Veterans and their family members. Though our services are different, they both aim to end the suffering in silence of so many Veterans. Over this year, we have discussed all these things and one thing was clear-we have the same mission. A partnership was born that extends to the many Veterans we meet each week.

You might think this is just a story about two people in the community working together to help Veterans, but it isn’t. Yes, we benefit from the collaboration because of the confidence and trust that is shared between us. I know he will work hard and go the extra mile to help those I refer to him. He knows this of me too. Yet, the most important part of our meeting is how our complimentary services have benefited those that have served and their families. He most often refers individuals who have suffered in silence for years due to experiences from their service. Most often it is combat related. veteran-blogHe tells them how things can get better and how they can feel better. He offers hope from someone who has been there. He helps connect them to the services they need. And they get better. When they come to our Veterans Program I give them information about what they are dealing with, the sense of isolation reduces, they feel the support, more things seem possible, and more gets done. I tell them, “You didn’t get here by yourself, so build a unit that will help you get out of this.” Easter Seals Greater Houston’s Veterans Program can be part of that unit. A County Veterans Service Officer is part of my unit. And we press forward . . . offering hope and services to those who want them and who no longer want to suffer alone.

Dr. Cristy Gamez-Galka, Mental Health Lead for Fort Bend Veterans Case Management Program, Easter Seals Greater Houston

Easter Seals Greater Houston is proud to offer a variety of services that Veterans and their families can benefit from including Fort Bend Veterans Case Management Program, Fort Bend Veterans Companion Dog Program, Bank On Montgomery County as well as the collaborative efforts of the Texas Veterans + Family Alliance.

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Little Steps Big Success with Easter Seals Houston Early Childhood Intervention Program

chelsea linn pic 2Written by a client’s adoptive mother.

‘It was Thanksgiving eve 2014 that I received a call from my husband wanting to know if I was still interested in adopting a baby, my heart sank. My husband and I only had one daughter and she was now 19.  We had always said one day we would try to adopt but had not pursued it, so I was very much surprised by the phone call.

My husband went on to explain that a very distant relative of his had reached out to him to see if maybe we could take a family member’s newborn, if not they were taking her to the local fire station.  We had until midnight to get there (Dallas), and well my response was an immediate YES!!!!  I left work, went straight home and we had a family meeting to ensure our 19-year-old was on board, AND her response was “what are you waiting on… GO”!penguin playing pic

We brought Jordan home that night she was 6 weeks old.  We immediately noticed that she wasn’t crying very much and that she was moving her head and arms very little. I took her to the doctor and they told me she wasn’t moving or crying because she had been left in a car seat or swing for long periods of time and had very little interactions with her parents. The doctor told me babies cry because they need something, but if no one responds eventually they stop crying. It really hit me hard now how much she had been neglected. I contacted the CPS agent in Dallas and she explained what all had happened, she told me that Jordan had been born with 4 drugs in her system and that was why they had an open case, I had a home interview and the file was closed with CPS.

monkey communication pocI had heard about #MakeTheFirstFiveCount and their on-line Ages and Stages Questionnaire.  I filled out an Easter Seals referral form and Jordan was evaluated by Easter Seals Greater Houston‘s Early Childhood Intervention Program (ECI) and on January 28, 2015 she was diagnosed with a NON-categorical four-month delay and she started Physical Therapy & Occupational Therapy with the Liberty County Easter Seals staff.cheetah moving pic

Ms. Leanne Armel, an amazing therapist that has been with Easter Seals Greater Houston for over fifteen years, started working with Jordan intensely, and she told me this wasn’t going to be easy and for me to stay strong…This was one of the hardest things I’ve ever had to do, as her mom my first instinct is to protect her from hurting (she had been through so much already). Every time Ms. Leanne saw me she would always reassure me this was for the best and always gave me early intervention caregiver’s techniques to do at home & in the classroom as well while not doing therapy.

Nov 2015 Infant program blog pic3 by Sharon MottA few months into it Ms. Leanne told me not to give up but to be thinking about talking her to the doctor to see if she would benefit from surgery. I was so scared and unsure as to what to do?? Ms. Leanne was so comforting and really listened to me without judging, she understood how hard it was to see Jordan crying during the sessions, but I prayed every day for God to lead guide and direct all decisions.  January we had our second IFSP (Individual Family Service Plan) meeting and Jordan graduated out of the program and was ahead of schedule in most milestones!! Can you believe we were discussing surgery one year ago!!  Now she will be school ready! and we are equipped with more knowledge and resources moving forward!

Sears Family,  Easter Seals Greater Houston Early Childhood Intervention Program Clients

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