About a year ago, I had an article published in The Autism Asperger’s Digest entitled, “Nothing to Hide: The Danger of One Wrong Provider.” Now, as we are preparing for Ben’s transition from intensive to post-intensive therapy, it seems like a good time to revisit this issue. Except, this time, instead of a lesson learned from sticking with the wrong provider, I want to take some time to describe what it’s like to have the right providers.
Ben could be described using many wonderful words. He’s loving and funny; he’s sweet and smart; he’s theatrical and entertaining. He’s many more wonderful things. But he’s not easy. Providing Ben with useful therapy is no easy task. For one thing, he resists the typical ABA environment and other tried-and-true tactics. And by “resists,” I mean biting, pinching, kicking, screaming, I’m-not-going-to-do-it-so-don’t-try-to-make-me tantrums. He’s a willful little boy, and that’s part of his charm. Really, it is. But…it means our therapists have to be creative. They’ve had to try to do things differently. Some of that is differently from “normal” autistics; some of it has been unique to Ben. It’s a lot of work to come up with all these new, workable ideas and keep up with Ben at the same time.
The therapists we have now have risen to the occasion. For the first two years, Ben made little progress. (Not “no progress,” just not enough.) Had he been in certain other programs, a therapist recently confessed to me, he might have been kicked out for lack of progress. See, lack of progress would, um, skew the research data some of these organizations are trying to gather to prove the effectiveness of ABA.
(The therapist in question knew what she was saying when she said that; and she knew I would get it. But, for anyone who might not quite catch it: ABA therapists (at least in our area) are actively eliminating certain recipients of their services in order to bolster the data that supports their claims of ABA’s effectiveness. The skewing is actually the kicking out, not the lack of progress. This is unethical behavior on the part of provider/researchers.)
But Ben didn’t get kicked out of the program he’s in. They persevered. They changed tactics. They learned from Ben how to teach Ben. And the amazing thing—or, well, not so amazing, but hey, it’s rare enough that you’d think it was amazing—is that it worked!!!!
Yep, after two years of seemingly little progress, Ben has made leaps and bounds and the therapists are still challenging him, still helping him progress even further. This, in and of itself, makes for some exceptionally wonderful therapists. But there’s more…
After three years with both Will and Alex in therapy, our house tended to feel invaded. I mean, this was our home, but sometimes it didn’t feel at all like home—not for Mark and me, and not for our boys. After three years with Ben in therapy with different providers, our house is a home. Therapy is not an invasion. Therapy is something that helps all of us.
And there’s still more…
Will and Alex were abandoned by their last providers. Alex was completely abandoned. Will retained some of this therapists, but not the leads—i.e., not those who had the extensive training to do programs and stuff. For Will, this was mostly fine. The advice, guidance, and therapy we get from the school system is completely applicable at home. But, as regular readers will know, Alex hasn’t been so lucky. Alex has many needs which we cannot figure out, let alone meet. We’ve asked a lot of people for advice and guidance—a lot of trained professionals. We’ve had a lot of people who don’t have any answers not be forthcoming enough to tell us they don’t have any answers. It’s very frustrating.
In steps the new set of therapists. Generally, these leads do not take on post-intensive kids. It’s not particularly cost-effective and it’s not particularly effective to do so. But, they’ve been here for three years and Alex needs help. So, they’re stepping up.
What’s better is that despite the many professionals who didn’t have any answers, I’m totally comfortable with their contributions and I’m already excited about some of the things we’ve discussed off-the-cuff.
So, what does the right provider feel like? Someone you know you can trust, who is willing and able to help, who’s willing to learn and teach the child and not simply the disorder, someone who can be there without being an intruder, someone who is rooting for your child and your family to succeed, to adapt, and to progress as you are so you can be who you have the potential to be. And it’s amazing!
Oh that is wonderful! I was in a similar situation for one of mine..and eventually found the right people who worked WITH my son-who looked at HIM..and figured out ways to work with him-that encouraged and inspired…This was nice to read for many reasons. Firstly, I am so happy to hear that your boy is getting what he needs, that you feel good about it..AND it is also nice to read positive stories about the people who work with our kids. To often the negative stories get more attention. On a totally different note…I always had a hard time when therapists came to our house..I always felt I had to go on a cleaning frenzy-or at least vacuum!
I really get the point about the therapist learning to understand what works best for your kid. There are times I bite my tongue in order for her to experience directly the consequences of some intervention she’s trying. I figure she’ll come to know him and his limitations that way. He is going to give her a ride for her money. Like your beautiful son, the fiery nature is part of his charm, but can make sessions stressful and emotionally exhausting for all involved.
I’m glad you were finally able to find the right providers for Ben. I have never been in ABA so I can’t speak of that, but I can certainly relate to the importance of trust and getting to know the client rather than just seeing the disorder. This is why my current treatment providers are way better than my former ones.
Kathleen,
I hear a lot of negative stories about therapists, too, which is part of the reason I wanted to do this post. I don’t regret my original article–it’s important for people to realize that those situations do happen and that they are not powerless. But at the same time the good ones deserve kudos.
I know the cleaning frenzy feeling. Though, usually the only chance I had was after the therapists got here, and with Ben running around it wasn’t always possible then, either.
Sharon,
There certainly are times to bite your tongue. But there are also times to speak up. While a good therapist is going to know more than you about all the strategies and tactics that are available to try, you know your son–what works, what doesn’t. Working together is a really effective way to start things off, but sometimes the therapists resist. If you see too much of that, if they treat you as if your experiences and knowledge of your boy don’t matter, then you might want to consider a different match.
Astrid,
I’m glad you’re in a better situation as well. Finding the right providers, and the right environment, is very important to success, which doesn’t always mean what we’re taught it should.
That is completely outrageous! I don’t even know what to say to that. It makes me feel so fortunate that even when Will didn’t make any progress in 9 months no one was allowed to fire him. Working with severe kids is so difficult and not all therapists are up to the task (as many of us know from personal experience) the idea that someone could stop providing services rather than addressing the programing faults is horrifying!
I was a bit shocked to hear that, too. But, from what I’ve heard, there’s little protection against this kind of thing. I don’t know how widespread it is, but it’s one way to bolster the supposed success rates of certain programs, particularly ABA.