This Fall, we’ll spend an extended period of time in Roanoke, Virginia for an intensive therapy at the Virginia Tech Carilion Research Institute. The intensive will be 4 weeks long and includes therapy for up to 6 hours per day. Talk about an intense intensive! A part of the intensive therapy program will include Constraint-Induced Movement Therapy (CIMT) where Solly’s stronger side (the left side) will be constrained to force the weaker side to take over.
We previously had 4 weeks of CIMT in Nashville at Vanderbilt Pediatric Rehabilitation right after Solly turned two. While we saw some gains (i.e. more movement in the right shoulder), because Vanderbilt’s approach was to cast the child and send them home without intensive therapy, aside from an extra hour-long appointment or two during the week, we did not experience a ton of progress with our first round of CIMT. While this approach may work for children with mild cerebral palsy, we found that it isn’t as effective for moderate to severe cases, like Solly’s.
With CIMT, the more therapy you can do while the stronger side is casted, the more effective the therapy will be. Given the intensive model available at Virginia Tech, I am eager to see how much awareness Solly will gain of the weaker side.
As I’ve researched various intensive therapy programs for children with cerebral palsy, the VTCRI program was one that never came up, mostly because what they advertise are clinical trials for unilateral cerebral palsy. Because Solly’s brain damage is rather extensive and affects both sides of his brain, he does not qualify for those studies.
So, how did I find out about their intensive model and what does that have to do with acceptance?
Let me go back in time a bit.
When Solly was just days old and admitted to the NICU, I sent an email to our closest family and friends to let them know what was going on. Jessica, my best friend from college, immediately wrote back: “Get in touch with my Aunt Sharon!! She and her husband study children recovering from strokes!”
Did I get in touch with Aunt Sharon? Well, eventually, but it took me nearly 3 and a half years, after several texts, emails, and conversations with Jessica encouraging me to do so. I can’t say exactly why it took so long, but it probably had something to do with the fact that I’m constantly overwhelmed with our special life and there always seems to be someone to call or something to do. Before I finally picked up the phone to call her, I watched Sharon’s TED Talk and was blown away not only by her intelligence, but by her passion, her compassion, and her ability to believe any outcome is possible for children with neurological injuries. My phone conversation with her only reinforced these characteristics. When I told her how some people tend to limit Solly and how we’ve struggled to build a team of therapists and doctors who see his abilities, her response was: “But, he’s only 3! There’s so much potential in there!” My heart soared. I wanted to both hug her over the phone and adopt her into my family. I also found out that Sharon conducts her research at Virginia Tech and that they routinely see patients for intensive therapy. She suggested that I speak with her counterpart, Stephanie, who heads up the clinical trials and intensive therapies at Virginia Tech to see what their team could do for Solly.
A few days later, during my call with Stephanie, she asked: “What are your goals with Solly?” My reply was simple: “I want to maximize his potential and allow him to be the greatest he can be.” She agreed with my reply, suggesting that they would help Solly maximize his functional capabilities and motor planning, which is something that the vast majority of therapies out there don’t do. She also said that she was impressed by my response: she often hears parents wanting to eliminate their child’s disability altogether, noting that while Virginia Tech’s therapy programs have great results, a child with cerebral palsy or other neurological insult will always have some degree of a disability.
After my phone call with Stephanie, I started ruminating on acceptance, where it falls in the grieving process, and where I currently am in the process of grieving Sol’s diagnosis. In the early days of our journey, I was very much in denial. No matter what my son’s MRI looked like or what the doctors said, I felt that Sol would come out of the NICU as a normal, typical child. He would defy all odds and live a very typical life. This attitude is quite common — denial is one of the early stages of the grieving process. That being said, some children do defy odds and grow up neurologically very typical after a stroke or multiple strokes. This just isn’t the case for Sol.
As we’ve grown together with Sol over the last 3 and a half years, I’ve learned to manage my own expectations on who Solly is and what he will be like as he grows older. I’ve accepted his disability. Yes, my son has a disability. He will always have a disability. I’m not afraid to say that statement and I’m totally ok with it. I love him for who he is and I’m insanely proud of how hard he works. Some days I still grieve the challenges that he faces, but most days, instead of grieving, I’m fully focused on fighting for him – fighting for awareness, fighting for acceptance, and fighting for people to see Solly for who Solly is.
As in the early days, though, I am still pushing for him to have as many necessary therapies and medical interventions as possible. I wouldn’t admit it at the time, but I used to do this to try and remove his disability. I no longer expect his disability to disappear. Now I simply want him to have every opportunity to gain independence in spite of his disability. Sol has many abilities and I think every thing we do for him will only increase his abilities. I fully believe that he has the ability to go to school, to graduate from high school and even from college. I believe he has the ability to live an independent life when he is older. He has so many abilities to share with the world. These beliefs are not denial, but are simply a demonstration of the faith I have in Solly. The sky is the limit for my child with a disability and I know he’s going to change the world for the better.