In the three months since we got home from our four week intensive at Virginia Tech (you can read about this intensive here: week one, week two, week three, and week four), I’ve been ruminating on what I learned throughout this intensive. Here are the top three things that have really stood out to me:
1. Constraint-induced movement therapy (CIMT) really works.
Here’s the video proof:
What’s more is that we’ve noticed pretty significant strength, gross motor, and visual gains as a result of Solly having more awareness and use of his right arm. That’s pretty awesome.
2. Working a home therapy program into your daily activities is so important for carry-over.
One of the concerns that is often raised by parents over a CIMT program is that the child will revert to using their preferred arm after the program ends. It’s a valid concern and it’s been our experience that, yes, Solly did revert to using his left arm after we got back home. However, he continues to recognize his right side and uses his right arm much more frequently than he did prior to our four week stint in Roanoke.
The one thing that decreased when we got home is his ability to open and close his right hand on command, which is something that the therapists had really just started working on towards the end of our CIMT program. I don’t blame the removal of his cast or the ending of the program for this slight regression: I blame myself for not following the home therapy program the Virginia Tech team gave me at the conclusion of our intensive. Given our rather hectic ending to the year, I was feeling a bit of burn out when it came to Solly’s therapy at home. After taking a break and focusing on just being his Mom (as opposed to being his home therapist), I’ve started working on incorporating some daily exercises to regain these skills.
3. Solly can do SO much more than anyone thinks he can and it takes spending lots of time with him to understand that, which is why the intensive model of therapy is so important to us.
This point comes with an anecdote.
It was towards the end of our first week in Roanoke when Stephanie DeLuca, the director of the Neuromotor Research Clinic at the VTCRI, came out of the therapy room after a day of working with Solly. She pointed at me and then to Mike and asked, “Ok, which one of you is the stubborn one?” I couldn’t stop giggling: years ago, when Mike first asked me out, I told him I wouldn’t go out with him because I thought we were both too stubborn and our relationship wouldn’t last. I was wrong about our relationship not lasting, but not on our stubbornness. We’ve always debated on who is more headstrong and we’ve definitely passed this trait off to both of our children.
After a moment of laughter, Stephanie explained her observation of Solly. Solly is smart and he understands everything you say to him, but he’s stubborn and he will wait us out, meaning he’ll lay there for minutes, even hours, and act like he can’t do what we’re asking him to do. Because of his CP, it takes a ton of effort for his body to do what his brain is telling it to do, so if there isn’t a huge motivator, he simply won’t do what we ask him. It’s not because he can’t do it. That’s a big difference. It took the VTCRI team several days of 6 hour blocks of therapy to figure this out.
What Does This Mean?
First of all, it gave me the validation that I’ve been seeking. Any time I take Solly to a new provider, I have to explain the above to them, but they look at me like I’m a crazy Mom who has an unrealistic understanding of her child. It felt damn good to hear an expert in the field tell me she sees what I see.
But on a bigger picture, it tells me that a doctor surely can’t get a complete picture of a child during one, or even several, medical appointments and similarly a therapist can’t always get an accurate read of a child’s abilities in a once-a-week, one hour therapy appointment. It also confirms what every single parent in the special needs world claims: you know your child better than anyone. What’s so hard is that as a special needs parent, you are constantly given advice, often mixed, from a wide audience of medical personnel and it makes you constantly question the choices you are making for your child. I’ve watched other special needs parents change their course of action so many times within the course of weeks based on what one therapist told them versus another therapist, versus a specialist, versus a doctor. No one speaks to one another despite us authorizing communication between all medical personnel, specialists, therapists, and school administrators, leaving us – the special needs parent – to be that medical coordinator, trying to play telephone from appointment-to-appointment and glean the important, truthful takeaways from each one. It’s hard to get anything done or to have the confidence to make extremely important medical decisions for your child because of this. It really is a struggle.
In the end, at least in our case with Solly, it’s clear that I need to just continue following my gut instinct, listening to all the advice that I’m given, but making decisions based on what I know to be best for him, whether or not his providers agree with me. (Talk about being stubborn, right?) Our experience at Virginia Tech has given me so much hope that this intensive model of therapy will prove to be an effective tool for kids like Solly and that the intensive practitioners will help give parents the confidence and guidance they need to make the best decisions for their child.