Our life is a weird series of appointments right now. I’m seeing a specialist for my thyroid, and Blu is seeing a bunch of peoples for his various needs. He now has 4 Occupational Therapists, a Speech Therapist, and a Developmental Specialist. I can’t imagine what it’s like to have a severely disabled child with enough specialists to fill a notebook!
Yesterday we met with the OT that is going to provide his weekly therapy. It is a WONDERFUL practice, when I called to get an appointment the phone was answered by a REAL PERSON! On the second ring! AND we were seen within a week! We saw three OTs at various stages of the game. One has been in the OT world since SPD was new 20 years ago. The other two were at various stages of their education to be an OT. One worked with Blu in the sensory room to see what he’d do, the other mostly watched, and the very experienced one created his file and interviewed me. Blu calls the new OT office “the fun place.” They have three rooms of various hanging equipment, a trampoline, a hallway full of games, and more.
Originally we were planning to have OT once a week. But this OT thinks, and I agree, that we need to take him more just to get him to open up in the rooms and with his workers. So he’ll be going three times a week, seeing one girl twice a week, and another (who we did not meet yesterday) once a week. Then when he makes a lot of progress we’ll take him down to twice a week, and drop the extra girl so that he seems the same therapist all the time. This is something we ALWAYS end up doing, going more then once a week to build confidence to get more out of it when we go once a week.
The OT yesterday didn’t do an full eval, because her focus was on keeping Blu comfortable and in control. She says the key to him is letting him control what is done, because forcing him will cause more anxiety and more panic attacks. She saw multiple problems with his vestibular system, which can help explain some of his speech, anxiety, the problems we’re having learning the alphabet, some of his sensory seeking behavior, his fidgeting, and his hatred of certain playground equipment, escalators, and certain stairwells. To make it easier to understand here is a video that someone else posted on their blog that was helpful. It’s about 5 minutes long and is on YouTube.
I tried posting the actual video and had nothing but problems. Sorry about that.
So for now we’re going to go three times a week to get him comfortable and open, then we’ll slowly whittle it down to twice a week, then once a week. And as we go we’ll do evals based on what he does, instead of forcing him to put on a show for us to evaluate him. We just have to see how it goes. Just like our daily existence it’ll go slowly, inconsistently, and on Blu’s terms. A common statement with SPD is that the only thing consistent in the inconsistency. It’s just a statement that every SPD parent ends up saying, it’s like weird SPD parent coding that we just KNOW that statement. We say it daily. That and “Dear God, just get me through this day, this hour, even just this minute!”
Stay Tuned, next I’m going to fight for better speech therapy through his IEP! Any tips, thoughts, or encouragement is always appreciated in the comments below!