Ten years ago, Natasha Traphagan and Rolando Lewis were experiencing all the excitement that comes with being first time parents with the bonus of carrying twin boys. Then, Natasha began having complications and gave birth at only 26 weeks. Both premature babies were born weighing just 1-pound 14-ounces.They received special care in the hospital's Neonatal Intensive Care Unit. After 3 long months there, Antonio and Tavion Lewis were able to go home. Their journey was far from over. Additional surgeries were going to be needed, but that would have to wait until they were at a minimum weight of 10-pounds. They were over a year old when they reached this mark.
Over the next few years Rolando and Natasha began to notice that developmental milestones were not being met. Uncontrollable screaming and crying began, accompanied by frequent physical outbursts. Tavion started to say a few words, but that slowly stopped. Early on, they were diagnosed with Global Development Delay. By age 5, they were officially diagnosed with Autism. “It was heartbreaking, after all the set-backs we had already experienced. Knowing the future that you, as a parent, have mapped out for your children, isn’t going to be what you planned, it was heartbreaking,” explained Natasha.
Immediately, their doctor recommended seeking help from Easterseals Capper Foundation (ESCF). In the fall of 2015, both children began receiving services at ESCF for Speech therapy and in 2017 they began Occupational therapy. They are also on the waiting list for Autism Services. Many individuals who have autism also have sensory systems that are dysfunctional. Sometimes one or more of their senses are either under-reactive or over-reactive in response to a stimulus. As a result, they may show actions such as hand-flapping, rocking or spinning. Occupational Therapist Crista Porter uses sensory swings to help both Tavion and Antonio. Crista shared, "Both of them seek out deep pressure. For example squeezing of the hands and the swing can really help with that needed input. It also helps them transition and calm down."
Most of Tavion and Antonio's therapy sessions look very different. With Tavion, the focus is more on self-care tasks, like working on buttons and expanding his diet. While, Antonio works a lot more on sensory issues and having the focus to transition from one task to the next. A visual schedule was provided to their parents to use in the mornings, benefiting everyone. "Easterseals Capper Foundation is there every step of the way, from being involved with working with their schools, to giving us tasks to work on at home. We only go to Capper a few times a week for 30-minute therapy sessions, but they are with us well beyond that. You know you are family," shared Natasha and Rolando.
Initially when Speech Therapist Julie Watson began seeing Tavion and Antonio, both boys were non-verbal, making speech therapy a crucial part of their needs. They had a limited amount of some basic sign gestures and were using a communication app with voice output on an iPad to support communication. Spelling is a strength for both boys, allowing them to spell more often on their device. Julie shared, "Currently both boys are verbally expressing words occasionally, and continue to work on expanding communication skills with a voice output system. At times, the boys have to share one iPad, or they've even had to go without this support all together when both iPads were in need of repairs simultaneously."
Julie believes the best solution would be for each boy to have his own dedicated communication device, which is solely used as a communication aid and more durable than an iPad. Dedicated communication devices are more expensive than iPads, but some insurance companies will provide funding support. Unfortunately, this can be a time consuming process with lots of hoops to jump through, and the first time a funding request was made to the insurance provider, it was denied.
Both Antonio and Tavion have participated in our iCan Bike Program. This is a five-day program where individuals with disabilities learn to ride a two-wheeled bike, helping them gain independence and self-confidence. Natasha said, "I don't know where we would be if it wasn't for Capper. We want our boys to have the best quality of life they can. Our boys have made major improvements and we as parents have learned so much. I am so grateful for therapists, Julie, Kasha and Crista. You can see this isn't just a job to them, they genuinely care! It is so important to have places like Capper, to not only provide the care you need, but to help be a voice and advocate for you."
Easterseals Capper Foundation's purpose is to change the way the world defines and views disability by making profound, positive differences in people’s lives every day. We need your help to continue to advocate and provide person-centered services to individuals like Antonio and Tavion, along with their family and many others of all ages.
The impact of our services is life - changing and would not be possible without the caring and compassionate support of friends, volunteers and donors like you. You are a valued partner with us and together, we are making a difference. Your continuing support is needed, noticed and appreciated. Please consider a making a generous gift today.
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