Angels in Action
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy: By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome; It didn ' t take long for us to learn what life with an " Angel " meant. Sleep deprivation, behaviors, therapies, colds that always got worse, and social obstacles were some of the biggest challenges for us and Carter. There wasn ' t a day that went by that I did not think, " there has to be something, some therapy, some approach, anything that I could do to make his life- our lives not so enduring. Sleep seemed to be the worst. I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an E. N. T. The E. N. T noticed Carter had huge tonsils and extremely huge adenoids. The E. N. T was confident that Carter was suffering from sleep apnea. At two years of age, Carter had surgery to remove his tonsils and adenoids. Sleep drastically improved but Carter still seemed to have cycles of very little sleep.
We then decided to take Carter in for allergy testing and imagine my surprise when Carter’ s test results came back positive for allergies to wheat, gluten, dairy, beef, pork, cherry, and tree nuts. So that sealed the deal, we were going gluten and dairy free and everyone had to support the changes because Carter was allergic to it. It was amazing to see the differences in Carter after these foods that he was allergic to were removed from his diet. In a matter of days, Carter was less aggressive, more focused, reasonable, negotiate-able, his eczema went away, and his digestive system improved. Removing these allergens from Carter ' s body allowed us to see just how miserable he felt and what he was doing to cope with constant digestive discomfort, burning itching skin, and headaches.
Over his three short years, the very things Carter used to cope, quickly became habits and behaviors- the head banging, pinching, hitting, throwing, and yelling instantly improved but did not go away, and Carter had also learned to use these behaviors when he was frustrated, unsure, or when he just didn ' t want to do something. Carter yearned for peers but struggled to interact without becoming aggressive. Even though Carter ' s diet had now become natural to us and made a huge impact on our daily lives; something still seemed to be missing. Life was still very overwhelming for all of us at times. If Carter eats dairy or gluten or a combination of the two or any other allergen, Carter is visibly a mess! He will react to any impulse and sensation without thought or concern for anyone including himself. Still there is that missing piece that leaves Carter aimlessly floundering thru each day.
Knowing that Carter deserved and needed more, we began to investigate our options. In a meeting with our advocate, we learned of a school that provided RDI therapy. Carter has now been attending Dynamic Pathways for 12 months and I can not tell you how much the RDI approach has changed our lives- especially Carter ' s life! This approach seems to be that missing piece that Carter needed.
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WWW. ANGELMANTODAY. COM JULY / AUGUST 2013 | Angelman Today