ABA

Tucker was diagnosed with autism at age 2, but at the time his medical needs were so overwhelming that the autism wasn't really our main priority. His neurologist told us to put him in 20-40 hours of ABA therapy per week (ABA being the gold standard in behavioral therapy for kids with autism). Looking back now, the idea of putting Tucker into 20-40 hours of anything is hilarious, but at the time it was very stressful. As parents we wanted to give Tucker every chance to talk and interact normally with other children, and we were terrified that without the behavioral therapy he wouldn't do that. For any other two year old, starting therapy might have made sense. Tucker was of course far from typical; he had spent the first 8 1/2 months of his life in intensive care, and had 12 hours a day of home nursing. He had OT, Speech, and PT, as well as Special Instruction at home, which was the maximum we could get because the therapists in our area had no more availability. We couldn't take Tucker to center-based therapy yet because we were scared he would get sick from being on the same equipment as all of the other kids. When I called around for ABA therapists to come to our home, I was told Tucker would be placed on a months long waiting list and we would need to put down several thousand dollars to get started. Several of Tucker's therapists convinced me that we were doing all we could for Tucker at that age, and that he was not ready for intense therapy. The poor kid tired out after 45 minutes of therapy. So we took some of the pressure off of ourselves. Our home therapists eventually agreed that Tucker's immune system was strong enough for center-based therapy, and Tucker began sensory therapy with Mrs. Terri. He loved that, and still does-the swinging, big movement, jumping, climbing...it all really helps. So that summer, when Tucker turned 3, I called the center-based ABA group in the area. After a two-hour long evaluation, they told me that Tucker was no where near ready for ABA. He still had the trach, he was unable to sign or even point at pictures to communicate his needs, and they felt it would be a lot of money and time that we'd spend before he could really benefit. So we signed Tucker up for a one-hour speech therapy group at that center, twice a week to get him ready for preschool. For the first 3 weeks (meaning the first 6 sessions) Tucker screamed the whole time! For the last 5 weeks, he was very happy to go to school, as I called it, although he didn't really participate with the kids or listen at all. For three-year-old preschool Tucker did very well with behavioral therapy. His teacher was in graduate school to get her BCBA certification (meaning her behavior certification to perform "real" ABA, as I call it, so that insurance companies will cover the services), and worked very hard with Tucker. Tucker got his trach out in November of 2009, and started talking around January of 2010. We still didn't introduce ABA at that point, mainly due to finances, but we were reassured by many that Tucker had plenty of therapies going and we weren't doing a disservice to our child. It is sometimes hard for me to see Tucker's progress from the beginning of this school year to now; I often focus on how far he has to go, not on how far he has come. I am his mom, after all, and I am always looking ahead. But he has really made some amazing progress this year, and as he gets better developmentally and cognitively, problem behaviors and quirks have come out and become more obvious....the obsessiveness, the escalators, swings, rubbing legs, rubbing people's hair, refusal or inability to use the potty, etc. The outbursts he has are actually a good sign developmentally, as he is showing us his emotions instead of holding it all in or "checking out" like he used to. But we need the tools to help Tucker with his emotions, and he needs the tools as well; it seems like the more he progresses, the more anxious and frustrated he gets. So while Tucker's health is at a good status (thank God!), we are looking into starting ABA therapy. I asked a few people that I really trust for advice on where to go. This type of therapy is a big investment of time and resources, and I'm not going with just anyone. So I got the name of a therapist from several people. I looked up the website and realized it was someone I had looked into years ago, but then we decided to wait. By some stroke of luck, she is taking clients right now. I emailed her, and we had a phone conference last Thursday night. We discussed ABA in general, her theories and practices in particular, and Tucker's history and our concerns about him. She seemed really impressed! It's not often that Tucker impresses a therapist on the first try, haha:) She was trying to gauge where he is at, her first question was "Does he request things he wants?" I started laughing, "no he doesn't request, he demands!" She asked if we removed the item from the room, would he still request it? Yes, of course! She discussed how she could help Tucker increase his verbal and social skills. So for example, now if Chris leaves, Tucker stands by the window and cries "Daddy home, Daddy home, Daddy home" until Chris comes back down the driveway. The goal would be for him to one day ask me "When is Daddy coming home?" I tell him the time, or give him an idea of when he'll be home, and Tucker would be able to handle that. Or for example, we go to a family function. Instead of Tucker running through the house looking for lamps to turn on and off, he learns to go to his grandparents and say "hello"; even better than that, he wants to go see them more than the lamps....this one might take some work! There is way more to it, but it's things like this that would make our lives better and Tucker's life not so full of anxiety and frustration. The speech progress he has made in the past 18 months makes her very hopeful that he can speak even better with ABA. She was very happy with the previous therapists we've had, and that Tucker looks forward to therapy at home and at centers, asking for his therapists and teachers by name. She said that is the experience they want him to have with ABA, it is supposed to be fun for him. We are getting our ducks in a row for now, I have called the insurance company, and I now have to get some letters from his doctors saying that he needs the therapy. We hope to get Tucker's evaluation done by the end of April, and to start roughly 9 hours a week of ABA when summer starts. Tucker will start out with fewer hours at first, getting the therapists and Tucker both used to the program. We are hoping that this next step helps Tucker to develop better communication, social, and coping skills, as well as giving us all more insight into how to parent Tucker and interact with him. Wish us luck!!