We made it. We survived 16 days of constraint induced movement therapy (CIMT). Whew. Now it’s about managing my expectations, and my disappointment, over what “stuck” and what didn’t. And disappointed is exactly what I felt. Within five minutes of removing the cast he immediately started using his good arm, once again abandoning his affected side. Further, for the course of the CIMT, we focused on one-handed activities using his affected arm, and now were shifting gears to work on activities that require two hands. Carry this ball, pull this accordion tube apart, open this bottle…things like that.
The therapist we were working with took a video of Henry before CIMT and then again after. Before, I thought he performed admirably. She gave him a series of (two-handed) tasks and he figured out how to do them with one hand pretty quickly. Problem solving has always been his strong suit. The video afterwards was entirely different. It turns out that she had many more toys in her chest that he hadn’t seen before because she always presented them in a certain order and he’d just not made it through the pile. So this time, he sailed through them all, problem solving quickly as he went, using his right arm efficiently to hold objects down or wedge them apart. He had huge improvements in his shoulder movements, great range of motion with his upper bicep on his affected side and just generally quicker about every task she presented. Which is good, yes, but not really what I was expecting.
I want him to be able to cut his own food someday, to zip up his coat, to dress himself. In my head, those actions require at least basic control of his hand. Not his shoulder. When he was pointing during CIMT with his affected side? THAT’s what I want more of. Instead, he’ll one day be able to do the chicken-dance on par with his peers. Great. Not exactly what I was hoping for.
Then the occupational therapist that ran our CIMT goes on to tell me that in someone as young as Henry (he’s three), studies show that three hours a night of dedicated constraint time with a removable cast is shown to be as effective as this extended period we just went through with our non-removable cast. And, she noted, a lot easier on the families.
Well. That would have been valuable information before we started this whole thing now wouldn’t it?
In the time that has passed since our CIMT experience I’ve learned a couple of things. The most important is that movement of the hand starts with movement in the shoulders. At some point anyway, the neural-motor connections HAVE to be in place in the shoulder before they can be formed in the bicep, or the forearm, or the wrist or the fingers. And so far, the shoulder movements that he’s gained as a result of CIMT seem to have stuck. When we do this again, and I’m saying “when” and not “if”, I think we’ll work on more bicep motions and focus on those neural motor connections… then the forearm the time after that… and so on. I really wanted to start with the hand and work my way up, but that’s not how the brain works. The brain starts with what’s close and works its way out. That makes sense to me now, in hindsight, but isn’t something that I understood going in.
The second thing that I learned is that managing my expectations, and my hopes and disappointments, is as important as managing Henry’s therapies. I focused so much time on working with him and going through his exercises that I never really acknowledged that it may not have the desired result. I had this idea that this would make him use his hand, point, defend himself, catch himself when he tripped. I knew that it wouldn’t last, that we’d have to keep working, but I thought that we’d see these benefits initially and then the more we worked the longer those benefits would last. That didn’t happen. The second his cast came off those behaviors stopped in their tracks. Just stopped. Immediately. And that was ok. That’s not the goal the OT had to begin with, she was hoping for more shoulder movement, more range of motion and control, which he absolutely gained. She was THRILLED with his progress. Thrilled.
So our first experience with CIMT wasn’t what I thought it would be. It was harder than I could possibly have imagined, made harder by finding out that a removable cast was not only an option, but proven to be as effective. (At least a removable cast would have allowed comfortable sleep in a way the non-removable cast made really difficult.) It didn’t have the results I expected, though the gains we see are important in his long term motor development. What it did do, without a doubt, was demonstrate the ability of Henry’s brain to create new neural-motor connections. He absolutely knows he has a right arm now, and while I would have said that before, the video evidence proves otherwise. So if that’s the gain from this first round of CIMT, then that’s not a bad start. And maybe, after we all get a little more rest, and time helps us forget how hard it was, we’ll even do it again. Maybe.
This article is the fifth in a series of articles written by Beth about her experiences with Constraint Induced Movement Therapy. Read more articles from Beth.
Article written by Beth. Beth is a mom of two, Charlotte (7) and Henry (3) in a small town in rural America. Henry had a stroke in utero and as a result has Cerebral Palsy and Right sided hemiplegia. Beth still regularly Googles how to correctly spell Cerebral Palsy. She would describe her parenting style as somewhere in between desperately hopeful and cautiously optimistic, and is tremendously excited to blog about her parenting adventure on CHASA.