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.

RDI stands for Relationship Development Intervention. Brad and I are still learning about Relationship Development Intervention and how to consistently implement it in our family’s life, but I do know what RDI looks like. I see RDI everyday when I look at Carter and see my Angel happy, growing, maturing, successful, and building social relationships without aggression or major frustration.  I see Carter having his own thought processes that are appropriate for the situation he is in; he is not trained in social graces but has been given the ability to think for himself about how to make socially acceptable choices.

A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope with emotions. 12 months ago if a random person was crying or angry, Carter would hit himself, that person or whomever was in reach.  Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask “what is wrong?” or “is everything ok?”.  If the person is a friend or family member, Carter will go to them and rub their back and with gestures ask, “what is wrong?”  If the emotion is too much for him to understand or deal with, he will give the sign for finished and want to leave the area. For Carter, gaining understanding of emotions and what to do about it took a lot of time, work and support and is still a work in progress as he is making the connections that something happened to cause the emotion.  In the beginning, Carter would react instantly with negative responses to emotions he could not or did not understand so Brad or I would stay physically close to Carter, guiding him with either physical contact or cues through body language.

If Carter was banging his head we might put a pillow, a soft surface or our hand between Carter’s head and what he is banging his head on, and then give him a visual cue by shaking our head no.  As time (a lot of time) went on Carter would bang his head less and look to us for a cue when someone was crying or upset. When we noticed he was rarely hitting his head and consistently looking to us when someone was upset we began modeling appropriate behavior; we would step back and watch the person that is crying.  When Carter started to follow our cues without head banging and could choose to step back and look at the person that is crying on his own or with little to no cues from us, we started modeling a new behavior. I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person was upset.

When Carter consistently started to come to us or Baylor when someone was upset, we very slowly and cautiously started modeling the next step and we would ask the person what was wrong or if they were ok.  Currently asking the person if they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away from him; he may swat at them as if to hit them; so, we supported him where he was and added the option to “flee”.  Flee means he can sign or gesture finish and leave the area the upset person is in. This has taken Carter (and us as parents) a lot of time but  he has gained  a lot of other thinking processes too during this time.

Carter still has his moments but they are few and far between and he quickly regains his “self-control” or regulation.  I love this approach because as a guide- everyone is taught and allowed to support Carter. Sometimes Carter needs strategies to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support; but no matter what Carter’s behavior is, the guides, models, teacher, whatever you want to call them are supportive and are modeling the flexible thinking it takes to learn the relationships and connections that are a part of the world.  This approach comes without candy or food rewards and motivation, there is no place for shameful looks or humiliating comments; a behavior can be overlooked when there is growth in another area but heartless ignoring has no place in this approach.

With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning. I am so relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and rebuilding relationships that are allowing him to gain flexibility in his thinking, and the only way he was able to start doing this was through Dynamic Pathways and the RDI approach.