Sometimes, I get so caught up in just getting to the appointments, that I forget to evaluate how things are working to help my child. I wonder what does him the most good and lately, I’ve been wondering what does any good at all. And I’m wondering who to believe, who to trust, and how to allocate that very precious resource called “time”…
Some of you may have seen my post on Wednesday about the toilet plungers used by our Occupational Therapist. It was a funny little post about how the plungers help him use his muscles to pull himself around on a scooter board. But underlying the funny, is the reality – Is OT really doing him any good?
Truth be told, ever since we began OT, I felt ill at ease with it as a concept. I have tried for -what has it been – about three years? – to “get with it”, to read up on sensory integration, to follow the crowd – to see the emperor’s new clothes. But, if I’m being honest here – OT stands naked before me – I’ve seen nothing that indicates anything I’d really tie to progress through OT. And, look, I’m not saying, I’m right. I’m not saying that OT is not a good fit for someone else. I just don’t see it.
I’d like to believe the “brushing and joint compression” routine calms and “organizes” him and I’ve seen him calm down from crying after I do it, but is that really why he calms down? Or is it the effect of massaging type activity on his arms and legs? I hate to admit this but – shhh – I’m not a true believer in the power of OT.
I really hesitate to say this, especially since I think our OT is one of the nicest people in the world. And I freely admit that she’s told me all along that once a week sessions for my son are simply not going to do it – I will have to work with him daily on exercises and instructions she gives me too. Again, if I’m being honest – I don’t work with him daily. I’m lucky if I work with him once a week on this stuff.
I keep going to OT, partly because it’s what autism moms do. We all take our kids to OT. It’s often part of the school district’s IEP prescription and when we squeeze a paid service out of that turnip of a school district, by George, we’re gonna use it! OT is a standard given in that IEP prescription for us, and we’re using it. But I’m left questioning its value.
Here’s the deal.
My little guy took swimming lessons from last October that just ended last month. During the course of that seven months, he has been swimming – but he’s been doing it in an unconventional way. Standard swimming involves kicking the legs and “scooping” in the water with right and left arms in a 360 rotational motion. My kid has been “scooping” only with his right arm, or with his right arm and one-scooping on his left, followed with a half scoop on the left or no left arm motion at all.
I complained about this lack of motion. Eventually, the OT checked out his left arm. She said she felt “clicking” and his rhomboid and pectoral muscles were very weak on the left. She recommended we see a physical therapist. Upon her pronouncement, I obtained a referral and then sought out a physical therapist.
It finally dawned on me that two buildings over from where I work is a physical therapist who I’ve known for years. He originally worked with stroke victims so I never thought about him as seeing children. I figured, maybe, just as a favor, he could check out my son and let me know what he thinks. He did.
I went in with my son and from the first minute or two, he just kept repeating the same word to me – “hypotonia”. Low muscle tone. “But what about the clicking?” I asked. “It’s not clicking. It’s hypotonia,” he responded. He says he works with lots of children now, though he originally started out as a stroke rehab specialist. According to him, my son needs to build up his muscle tone. He says he can do it but he needs to have PT at least three times a week to start, decreasing to twice a week later on.
He told me that it’s not just his left arm. It’s his whole body. And that if left unattended to, he could develop scoliosis as he gets older. I got the distinct impression he was unimpressed by any of my son’s providers for failing to refer my son earlier for physical therapy. I admit some culpability here. I had a referral early on for physical therapy from our neurologist and I simply did not understand the importance of physical therapy and never worked it into the schedule.
Certainly, it is no excuse, but, why didn’t any of my providers follow up with me? Tell me the importance of PT? Is it because PT is not very important either? Is it because the whole cast of characters that treat autism don’t know what each other are doing? Foolishly, I was a lemming. I didn’t hear the other autism moms saying how they were taking their kids to physical therapy every week, so I didn’t push it. I only heard the mantra of speech and OT, speech and OT. You know, the one that’s drilled into us as autism moms at IEPs where the school district sets the stage by offering that service. And stupidly, since I didn’t hear PT from other moms, I thought it wasn’t that important.
Will I end up believing the naked concept of OT is standing next to the naked concept of PT? Or will this route lead to tangible progress? Stay tuned…