There’s a book that was suggested to me while I was in the NICU, right after Henry was born. About six months later, I finally got up the courage to read “The Brain that Changes Itself” by Dr. Norman Doidge, and today I feel like I’m at a crossroads, and it’s completely his fault. In his book, he outlined a study from the 1990’s that shifted the way scientists view the capacity of the brain to “rewire” itself after injury. Prior to this study, there was a small population of researchers who studied this concept of neuroplasticity, but it wasn’t widely accepted, and certainly didn’t merit funding. Then this study came along, where they gave monkeys lobotomies, removing the left brain let’s say and let them adjust to life with half a brain. Just like Henry, the monkeys stopped using the right sides of their body. They just didn’t have the neurons to support that because of the brain injury, so they accommodated and used the left side for everything. And then the scientists removed the limbs from their left side, which should have (by the thinking at the time) left the monkeys helpless. But it didn’t. The monkeys, without exception, all started using their right side, their “affected” sides, to eat, play, function… and MRI’s of the monkey’s brains demonstrated the neuroplasticity of the brain, that it could react to injury and reassign tasks if the need was great enough.
Now that’s where that study ended. As luck would have it, one of the research assistants moonlighted for P.E.T.A. and they were shut down based on the cruelness of the experiment. And that’s where I’ll pick it up, as today I can’t stop thinking about those monkeys, and the risk of cruelty versus the reward of creating a need that’s great enough to rewire the brain.
October 16th Henry will get a cast put on his left arm, his good arm, for three weeks in the hopes that his brain will take this opportunity rewire and allow him basic use of his right arm. Constraint Induced Movement Therapy, for real this time. I say for real because we’ve done this before. We’ve had two removable casts made over the past three years and by my definition, we have several rounds of “constraint therapy” under our belts. We put “lefty” in the cast, while “helper hand” takes the stage. We play around on the ipad, practice giving high fives, patty-cake, that kind of thing. We’ve talked about a non-removable cast before but our therapists have always shied away from it. He doesn’t have enough ability in his right hand, couldn’t do a basic grasp for example, and casting would leave him completely helpless. But, our evaluation last week reflected Henry’s in the same boat as so many other kids with hemiplegia. The muscles in his right hand are so tight that they are changing the shape of his skeleton and the bones in his wrist are starting to curve to the right.
So, that changes the conversation, and now Henry’s my monkey. Now we are casting his left arm, leaving him completely helpless, and forcing his brain to recognize his right hand, to engage those muscles just enough that the bones stop growing in the wrong direction. My heart hurts for my little man, knowing what’s in store and how impossibly difficult it’s going to be for him. And how my job as his mom is to make him do it. To hide objects in boxes and bags all over the house for him to fetch for me and then celebrate his achievements when he delivers. To stock the shelf with Cars stickers and M&M’s, knowing that there are few things Henry won’t try if he knows those are his rewards. To convince his brain that the need is great enough to create new neural pathways to the muscles in his right hand.
Is this the right thing to do? I have no idea. But I take so much comfort in knowing we did everything we could, to put him in the best possible position to succeed. That’s my job as his mother. And it’s also my job to make sure he never sees how terrified I am that I’m screwing everything up.
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.
