I wish it was yesterday. I wish we could just sort of erase that today ever happened. It wouldn't be any different but at least we could still keep plugging along believing that we were still tracking toward the best possible outcome for our little man. Now we have new information and everything feels different. Almost like it did when we officially found out that B had Autism. He was the same kid yet everything was different. Today was our 6-month review of Brady's progress in therapy and let's just say it wasn't what we hoped for. I feel a bit sucker-punched and deflated.
B has had a tough couple of weeks - maybe even a couple of months. I blogged about it recently. We've been struggling with motivation which is the whole key to this kind of therapy. If we can't motivate him, he can't learn. Additionally, his Autism seems to be taking over in a big way. His stereotyped behaviors are more prevalent than ever and there seem to be new ones every day. The vast majority of his time is spent "stimming" and it's clearly what he would prefer to do. There are times when I just can not get through to him at all. He seems to be slipping farther and farther away from us.
Just this week, we started a somewhat radical change in his therapy schedule. It feels like he is bored and kind of over the whole thing. And when we step back, we can't really blame him. In August, it will be 2 years of this. Two years of 40+ hours per week spent in therapy, almost exclusively in our home. Sometimes a week (sometimes more) will go by and he has never even left the house. He knows the drill, he knows the people, he knows what they can and can't do for him and he seems sick of it. Truly, who wouldn't be? So we knew we had to do something to shake things up. We've tried a couple of tactics unsuccessfully and now we're decreasing the hours of intensive, academic type learning and trying to build in more "natural" teaching time and outings. Easier said than done but here we go.
The review is complicated and we're still digesting but after such a positive report 6 months ago, this is disheartening to say the least. B is still making progress but it's slow. He isn't accelerating at the rate he was before. Initially, this doesn't feel like the hugest deal in the world because hey, at least he isn't losing any skills. It does, however, change everything. They are no longer predicting best outcomes. In fact, the discussion was about whether it will make sense to continue this therapy if he continues at this pace. This is the most expensive, most intensive, most disruptive, stressful therapy we could possibly do. So the payoff has to be huge. It appears that he isn't "learning how to learn" as we'd hope. He can be taught but he isn't learning incidentally - every little minute thing is having to be broken down for him and taught. He is still at about a 2-year old developmental level and he will be 5 in November. So obviously, he would never overcome his disabilities if he continues along this path. In 6 months time, we have gone from planning a "normal" life and starting kindergarten in another couple of years to adjusting to the idea of a child who will be dependent on us for the rest of his life.
I also was given a bonus 2 hours of therapy time to reward me for all of my efforts. I currently do 5 hours in addition to 2.5 hours of meetings every week. When we first started, they asked 10 and it was unmanageable. Seven will be a struggle too. I was just getting to a place where I felt like I had a bit more balance in my life. I would do absolutely anything for B but it is not easy to find the motivation without the reward.
I'm still digesting the data. This is all so complex. And we still haven't gotten our report back from the external review 2 months ago that seemed so positive at the time. Maybe it isn't as bleak as it seemed. I knew he had a rough couple of weeks but I expected the 6 month interval as a whole to still be positive.
In 6 months time, everything changed. So it can change again. It has to. But still, I wish it was yesterday.
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