Tag Archives: family support

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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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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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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