Wow - It has been entirely too long since I've posted anything. I have sat down at least a half a dozen times but I think I was waiting for something "big" to post. For that "a-ha" moment where everything clicks and we have figured out the secret to getting B. back on track. And well, we're just not there yet. And that's not to say we haven't been trying. We have been experimenting like crazy and making lots of changes including adding twice weekly OT to the mix, lots of new staff and dramatically different approaches to his therapy.
We've learned some things along the way. 1) B is NOT anti-people (yay!). He is anti-working for people. This is easier to handle. He truly wants to be engaged with us - he just doesn't want us to continuously place demands. Understandable? I think so. 2) B does not like to fail. The sweet spot for success with programs is typically somewhere around 80%. That keeps the kids challenged but motivated. For B, it has to be somewhere closer to 90-95% or he gives up all together.
We're working on it. We are much better off than where we were before. He is no longer apathetic. He definitely cares and is motivated a lot of the time. The self stimulatory behaviors do continue to interfere though so we're dealing with that.
It's a challenging time. But when I stop trying so hard to focus on the big picture, I am reminded of these little moments of glory that happen almost every single day. Yesterday, B hurt himself and he sought me out, said "owie" over and over, and clung to me like a monkey for over 20 minutes. Whenever I'd remove even part of my embrace, he'd replace it. He needs me. He loves me. We don't even need language to know it. How lucky am I to be his mom?
So for now, I think I need to focus on these little moments. That's my goal. I'm going to attempt to log them at least every couple of days. I'm going to *try* not to stress so much about the long-term and soak up and savor all of the beautiful moments that are happening right now. And maybe (hopefully) the long-term picture will begin to fall into place.
Here is one of today's moments. Little B singing "Go away Big Green Monster". His self-stim behaviors are very present but I love it just the same.
http://youtu.be/X8kkQ8Dz8Eg
I really like the realization you had "He truly wants to be engaged with us - he just doesn't want us to continuously place demands. Understandable?" This is also the case for my son who has Asperger's and really all kids to some extent. But more so for our children on the spectrum. They just get overwhelmed so easily and need space to regulate. Thank you for this reminder!
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