At a Loss After #Harvey

This is the first time in many of years that “Ericka” just didn’t know what to do…

Being a single mother of three girls; a 23-year-old, recent college graduate, and two nine month old babies, I started to feel hopeless. After all that has happened to me, how was I going to get back up and make life normal for us again?

Things happened to me beyond my control, things I never thought would happen to me over a two-year period of time. After finding out I was pregnant with twins (2016), 3 days later I was laid off of my job as a Certified Fourth Grade Math and Science Teacher. Then the babies were born prematurely and they were hospitalized for a couple of months. Twin A had a little more problems than Twin B in regards to her growth and other challenges, something I was far from being prepared to handle. What else could possibly happen were the thoughts that were running through my head. I shouldn’t have ever thought that, because Hurricane Harvey hit and it only got worse.

Hurricane Harvey left me in the state of devastation incurring damages to my home, as well as not being able to successfully move forward with the daycare that I had found, after being laid off as a teacher and during a new job search.

Easter Seals Greater Houston and it’s Harvey Recovery Program gave me hope not only by helping me monetarily, but also with counseling and encouragement. I reached out to them this year when the twins were hospitalized for two weeks. After FEMA denied me  and my homeowner’s insurance only covered things that were damaged by the wind, I felt like giving up. But Krystle, a case manager/counselor with the Easter Seals Harvey Recovery Program, was like an angel sent by God while in the hospital with my twins. She really encouraged me, gave me hope and made me see clear that things will get better.

With the help of Easter Seals, I was able to catch up on bills that have fallen behind due to the hurricane as well as get counseling services for myself due to the events that have taken place over a course of time. Coming from being a teenage single mother and being self-sufficient, it took a great deal for me to reach out to even ask for help for my situation. However, Krystle made me feel comfortable and Easter Seals has helped me so that I may pick my life back up and move forward in a new direction.

I am extremely grateful for this organization and the mission it has set in place to help people like me.

For more information on our #Harvey Recovery Program – http://eastersealshouston.org/Programs/emergency-harvey-assistance.html

We couldn’t have done it without the help of so many! Check out our #HarveyHeroes

Advertisements

Leave a comment

Filed under Latest News

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.

Leave a comment

Filed under Latest News

Anchors Aweigh Campers

IMG_1272Ahoy from Camp MOST (Miles of Smiles for Teens)! This past weekend, Easter Seals Greater Houston hosted Camp MOST– a weekend retreat for young adults with cerebral palsy and other neurological disorders. Our theme this spring was Anchors Aweigh- we had nautical decorations, activities, and snacks! With 14 amazing campers and 17 amazing counselors we set sail for a fun filled weekend!

IMG_1175On Friday, the campers docked at Camp For All around dinner time. That night, we had an awesome Amazing Race activity and then a campfire complete with s’mores, skits, and some campfire songs. On both Saturday and Sunday Camp MOST hit some rough waters- it rained off and on both days. Despite the rain, our camp had the MOST fun! We got to participate in canoes, fishing, photography, archery, paintball, ZIPLINING, and most of all our amazing Jam Sessions.

In our Jam Sessions, we talked about awesome topics related to transition into young adulthood, and what that looks like as a teen with a disability. In the first Jam Session we discussed how independence doesn’t mean doing it all alone. Topics included learning to speak up and self-advocate during IEP meetings and college advising meetings. Later in the day campers were asked to “Set Your Course!” and each shared what they want and what they need to do to achieve this goal.

Each camper ended the weekend with fantastic memories, new friends, and a plan to set their course in order to achieve their dreams! All aboard for success!

0224181011

“I want to figure out where I am in life and who I truly am. Step 1: Don’t listen to the negative talk/self-talk”

Mackenzie Richard, Camp Coordinator, Easter Seals Greater Houston

Leave a comment

Filed under Latest News

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

Leave a comment

Filed under Latest News

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

Leave a comment

Filed under Latest News

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

1 Comment

Filed under Latest News

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

Leave a comment

Filed under Latest News