Tag Archives: Disability Together

Nothing “Dull” About Camp

Easter Seals Greater Houston hosts several camps throughout the Greater Houston area and at Camp For All in Burton, Texas every summer. These camps serve children with disabilities, some of which are medically fragile, and their siblings. The days are filled with inclusive, accessible activities that all the children and volunteers enjoy. The following was written by one of our amazing 2018 summer camp interns.

ConleeHi my name is Conlee Dull and I go to Memorial High School. This will be my 5th year volunteering with Easter Seals Greater Houston specifically their summer Camps and Recreation Program. I think by far one of my favorite memories from camp is the first time I ever gave a camper an award. Just to see the smile light up on their face and how proud their family was honestly made everything I did with my camper even more rewarding. Through volunteering I have learned that people with disabilities are the same as any other kids and they just want to have a good time without being judged just as any other kid would. Through volunteering with Easter Seals Greater Houston’s Camp and Recreation Program I have really developed a passion of working with people with special needs and I can’t wait to see how much it grows this summer when I intern!

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Conlee Dull, Summer Camps and Recreation Intern, Easter Seals Greater Houston

 

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On The Road To Recovery from Harvey

We asked one of our Harvey Case Managers, Chad, to write some thoughts down…mostly because he is clearly insightful and always has some “good nuggets” about the process of intake, referral, coordination, mental health etc leading to the road to recovery from Harvey…

And in case you ever wondered “what does a case manager do”?  Case Management “is a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote quality, cost-effective outcomes.” Basically they are the detectives or super sleuths, if you will, of the social service world….and are genius at finding resources, that most cannot.

Most people don’t realize how many individuals are still affected by Harvey. These people are struggling every day with trying to make ends meet after losing everything and getting denied by everyone for assistance.

It’s getting harder to find clothes. One client was given pants 10 sizes too big. He gave them to a friend who could wear them at least.

I had a client the other day tell me she has been calling everyone and no one wants to approve her for any help. Some are denying her because she’s on someone else’s list …so she must go remove herself from that organization and reapply to the current one she’s trying to get help from.

I have a client who is living in a mold infested apartment. Her child has bad asthma and takes breathing treatments. Her stove shocks her when she tries to cook something.

When I call people, they are so thankful someone called them back and can provide some assistance. Most people say they haven’t been able to get anyone to call them back in months and have tried just about every major organization.

None of the FEMA adjusters seem to know what they are doing. They are mostly new hires and are learning as they go. One woman has had her house repaired by FEMA, but the repairs weren’t done properly and the house is worse than when they started.

I’m getting a lot of people who just need help replacing clothes and the small things you and I take for granted.

Everyone that I can provide direct client assistance to is thankful no matter how little it is.

I can’t count the number of people who have cried on the phone when they tell me their story and how thankful they are that I can help them. I also can’t begin to describe how amazing is feels when I’m able to provide these Harvey victims with some of the help they desperately need.

And the knowledge that we are helping families everyday rebuild their lives is the reward. Check out some Thank You‘s here!

Chad Finch, Case Manager, Easter Seals Greater Houston, Harvey Recovery Program
Need help – Harvey@eastersealshouston.org

 

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Harvey Recovery Thank Yous!

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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!

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“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

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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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