I don’t even remember how I got started on the idea of more therapy. (If you know me and remember this, please let me know.) It seems like N was around 4 or 5, about the time that I really should have been maxed out on therapy for him. Maybe I was thinking about that being a window of time that would make a big difference developmentally or something, but I did research and discovered a developmental guru of sorts (aka, the Wizard). I wanted an outsider to take a look and see how he thought things were going with N. The evaluation would not be cheap, we would have to travel 6 hours, and the ongoing “exercises” and recommendations would be nothing short of boot camp for us all. So, I skipped on over and signed up!
Actually, while I was in the researching phase, I visited with a mom who had an older child with Ds, and she mentioned a period of intensive therapy for her daughter several years prior. I was about 80% sure we were going forward when I found out that she had done something similar. When she told me that they pretty much turned her house into a gym and had a revolving door with all these volunteers coming in to work with her daughter around the clock, I knew that I could not do that. So, my version looked more doable, and I pressed forward.
Then, I ran into The Lady At The Park. I knew of this woman’s background as a formidable advocate for her daughter with autism. She was most admirable and strong. She was well-versed, articulate, and a mover and a shaker in our special needs community. Since I was gathering information, I thought she might be a good one to ask about this venture, and for a few short minutes, I could not believe my good fortune in running into her. I introduced myself, and we spoke about our children while we each pushed a swing. Then, I got right to it. Had she heard of this organization and what did she think of the idea? She said there were dozens of them out there, did not know of this one in particular, but did not think it would be something she would do, all in a dismissive way. I asked nothing further, and soon they prepared to leave. As she walked toward her car, she said something that stunned me. It was, “Mainly because, you know, no matter what you do, at the end of the day, my daughter will still have autism and your son will still have Down syndrome.”
I wondered if she honestly thought I did not really know this. Was she being snarky? Did this stun me because I did not know it was true? No. It stunned me because I felt that she thought I was looking for a “cure”. This is not something I have ever felt powerful enough to find! I simply wanted to help him in every way I could, and if there were things we could be doing to help him develop, why not?
Despite my chat with The Lady At The Park, we decided to go for it. (And after we returned from our first visit to see the Wizard, I called her and told her that my son no longer had Down syndrome. . . Oh just kidding. I have this kind of nerve in my dreams.) I am conflicted over whether we would do it again, though. All of the exercises are done at home by the parents and several are done multiple times per day. Part of me says it was really worth it, and part of me says that I nearly killed myself with compulsivity. You see, I am not really a type “A” personality (probably not even a B+), but I do enjoy a list. And I don’t let go until it is done. With this program, there is always a list and it is never done. So, if they could modify the curriculum (!) for parents who are somewhat compulsive, or if you can flush a list, I would tell you to do it. Just do it in moderation. I will tell you more about what the Wizard said next time.