We just wrapped up the Kiddo's IEP and the OT couldn't make the meeting. I asked for her to call and she did the very next day. I'm pretty sure by the end of the conversation she had wished she wasn't so prompt with getting back to me.
The Kiddo's constant need to be in motion and scripting has leveled up. Big time. I needed some ideas. Ones I haven't tried before that might help with his sensory needs. My bag of tricks was turned inside out. I needed to bring in the big guns with her all her fancy learning and degrees. I sat back and waited to be startled by her insight and suggestions.
Except I wasn't.
She started to rattle off her brand spanking new ideas and I had autism deja vu. It was pretty much like listening to Don Pardo announce "The following is an encore presentation of your ASD child's therapy treatment plan." The greatest hits of what we have done already with him and I just sighed. Loudly. (I"m Irish. We could medal in that category.)
I can tell she's getting flustered that I am not responding with more enthusiasm. It's hard though to be enthusiastic when you have been there. Done that. Sent the freaking postcard and bought the sensory friendly no seams t-shirt.
I'm not a know it all. Far from it. That's why I'm asking for help. I'm also not going to lie and pretend we haven't done something and the results were basically "Pfffffft!' I was kind of hoping her bag of tricks would be a bit deeper. Maybe have some secret compartments that mine did not.
I'm not saying that I wouldn't be willing to try some of these again. Heck, the first time we did feeding therapy the results fell flat. Now the Kiddo is really rocking it. It's entirely possible that with some maturity and time, one of these might be awesome.
I just wish she would of been honest and be like "Dude, I got nothing else." I could respect that. I also respect that she's trying to come across as together and hopeful. But I almost want her to be like "Damn girl. This is it." Just acknowledge that this is where we are stuck.
I'm just starting to feel like my life with this autism stuff is one giant rerun and I'd really like some new episodes. I can't change the channel. I can't find the remote. I want to hit "next episode" but autism isn't Netflix.
So now we get to pick one that we want to try again. Here goes nothing. Stay tuned for director's commentary. I'm going to have loads to share.
I have a feeling that you are on top of things, but I also have to believe that it takes a combination of villages to raise a child with autism. School based therapy in addition to privately based therapy may get the desired outcome you seek. I know public schools are limited with providing additional training to staff members. Hopefully you don't live in Ill. Our Governor is planning major cuts to Special education.
ReplyDeleteI love your blogs. My wife and I have four (not lying, for real) on the spectrum and we have these issues time and time again with therapists and "experts." We've found one good ABA therapist that now lives in another country, one good OT that may as well live in another country she's too far to drive to. It seems difficult if not next to impossible to get all of the plates twirling at the same time for each kid. We've had a big issue with OT and were hitting a brick wall where our choices are to pay out of pocket for private therapy. But I can definitely relate to you with the been there done that...feeling and the wonderful people who see kids like ours for a job, don't live with them...so their perspective is and always will be limited...We got our most recent 'sensory" diet checklist and we've done and do every single thing...so were in the same boat, ok what else you got? And don't say brushing ...tim
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ReplyDeleteI teach in a middle school classroom and all my kids are on the spectrum. They range from non-verbal not bathroom trained, to high functioning. I too, hit a brick wall every day! I am constantly trying new things to help the kiddos...I can imagine what you all go through. I love the my kids!!! Thank you for bringing them to me!
ReplyDeleteOh, this is one of my biggest fears! My son's a little younger, so we haven't reached re-runs yet, but I have a sneaking suspicion we will. My son's transitional IEP from preschool to JK is just around the corner, and I'm already wondering what "new advice" I'm going to hear.
ReplyDeleteThe more I read and learn, the more I see I'm just as smart as the people who are trying to help my son. Not arrogance. It's just that of everyone helping, I'm the one who's putting the most work in. He's my son. His nuances are my obsessions.
Keep us posted on the reruns. I'm sure I could learn a thing or two!
Check out HANDLE. It's a sensory approach that won't be in your typical OT's bag of tricks. It accomplished great things for my autistic kiddo, who is now 20. Love your blog!
ReplyDeleteDoes your local Arc sponsor Capitol Days where you go to the state capitol and talk to legislatures about issues?
ReplyDeleteMy head is sore from banging it against the wall in frustration. We go to first "expert", who then refers us to second "expert" and so on, until we come full circle and get referred to the original person again...
ReplyDeleteI feel your pain.