Last year when we did CIMT, people would stop me and ask about my daughter’s cast. “Poor thing, did she break her arm?” they would ask. I always consider a question like this as an opportunity to educate someone, if they are willing to listed to the answer. “No, I would explain. Sierra had a stroke before she was born. The cast is on her “good” hand and arm. It is to force her to use her weak hand and arm.” Most people don’t know that unborn babies have strokes. I didn’t, until I found out about Sierra’s. They seem very surprised by this information and usually ask more questions, now that the door has been opened and they have been invited into our world.
Often, parents of hemiplegic kids feel offended when people ask uninformed questions. I believe that most people come from a place of curiosity and compassion and sharing our experiences helps us all to feel more connected to one another. And I love feeling connected to others. I don’t believe in strangers, only people I have not gotten to know yet. I know, it’s kind of goofy, really. I have this idealistic view of wanting a world where everyone feels connected to everyone else and where everyone wins in any human interaction. Yes, I’m a hippy girl born a little too late and I believe in peace, love and rock-n-roll.
So, back to CIMT. Sierra has the great fortune of having a stellar occupational therapist. She is up on latest therapies for children and is not afraid to experiment with what works on any given day for a particular kid. She does therapies that other OT’s won’t, like electrical muscle stimulation and CIMT, both of which are widely used for adults, but are only now being used on young children.
Since most OT’s don’t do CIMT, often parents take their kids to expensive camps that specialize in this therapy. They have to travel far away from their home and stay for several weeks to receive the therapy.
On Tuesday, we visited our OT and she custom fabricated a removable cast for Sierra. We will keep Sierra in the cast 24/7 for many weeks. (Last year, we planned on doing six weeks, but ended up doing eight weeks of 24/7, then a few hours a day for a couple more months.) I will work with her several hours per day, using hand over hand first to help her do the movements, then little by little, we hope that she will begin to do them herself.
It can feel a little cruel to put food in front of her when she is hungry and make her figure out how to eat with “righty”. Many tears will be shed and many temper tantrums had, but in the end, she will gain more use of that hand and arm and ultimately, it will boost her sense of independence and confidence. I have to keep my eye on the prize when she is fighting me because I cannot reason with her yet. She is just too young to understand. Hopefully, she will thank me later, instead of feeling emotionally injured by the trauma of the experience.
One of the great things about the camps is that a bunch of other kids are also doing the therapy and I am sure this can help. Sierra is on her own. Here we go…
The CIMT and its hoped for outcomes reminds me of a quadriplegic man I was acquainted with, who seemed to be very strong in his arms and shoulders. I asked him once whether his spinal injury was fairly low, but he said it was up high, actually. “Then why can you use your arms so well?” I asked. “When you come from a poor tiny Micronesian island in the middle of the Pacific,” he replied with a wry smile, “they don’t have fancy equipment for you when you break your neck diving. They stuck me in an ancient manual wheelchair, and left me there. It was a matter of survival: if I wanted to get around, I had to figure out how to do it on my own… Best thing for me, it turned out.” Where there’s a will, there’s a way.