Over the past several months, ever since Simon's stay in the PICU, we've been on a bit of a roller-coaster ride. We've had many ups -- the fact that he survived the seizure intact and hasn't had any more, the progress he made through the CIMT program, and his awesome new iPad skills (I just watched him play a matching game like a pro!), to name a few. There have also been a lot of downs (sorry, I'm going to leave them out. They are so not as much fun to list).
Overall, I'm feeling pretty ready to get off the ride... constant worry and stress and hyper-vigilance have made me queasy and I am ready to step back onto solid ground. I'm also tired of having to view Simon through the murky lens of disability -- what can't he do, why can't he do it, how can we address it... etc. I know that it is a necessary viewpoint, and that it is important for us to be aware of and address all of his needs, but sometimes, I just want to look at him as a KID.
Last week, in a conversation with Simon's teacher, she told me she didn't really agree with the PDD-NOS diagnosis (wherein I explained the brain-damaged/atypical aspect of it, as it was explained to us.. but I digress...). Anyway, she remarked that to her, Simon was very similar to many of the other children she has taught with CP. She also said that it was too bad he was the only one with CP in her current class, because in the past she has had as many as seven CP kids at a time. When I told her that the only other person I knew with CP was an adult and much more affected than Simon (therefore not a great means for comparison), she was surprised. I kinda was, too.
Though I've seen many children with various types of CP at doctor and therapist appointments at both Hopkins and KKI, and though I've made lots of small talk with their parents (who, most often, are not remotely local), I don't know any other children like Simon. There aren't support groups or community programs specifically focused for CP the way I know there are for Autism and Down Syndrome. I've scoured the web for resources, and I've found a couple of blogs (FYI, the blog www.lovethatmax.com has been the closest comparison and the best to read. Max is a few years older than Simon, and just as cute), and a few service-provider-type resources (as in more doctors, therapy and even lawyers), but nothing like a playgroup, which I know Simon would love, and I would too.
We've been a bit of an island, so to speak. And once again, the obvious hits me back up-side the head. No wonder this is so depressing, so isolating, so scary and unknown. I DON'T KNOW ANYBODY.
Therefore, how could I possibly know what a "typical" CP kid was like? I solely depend on our doctors and therapists for their evaluations and assessments, based on their knowledge and experience. It's all I have, and I've always been told that each case is completely unique.
But.... how great would it be to see other children like Simon side-by-side, to talk to their parents, to compare notes and victories and battle scars? How great would it be for Simon to see other children like him, and maybe have the chance to build friendships through that association?
So, those thoughts have been running through my head the past few days. I've even been considering how far I could personally go trying to start a monthly playgroup, but I'm not sure how successful that would be. So far, I haven't gotten past the how-will-I-find-these-people-if-they-even-exist stage, to move onto the but-will-they-want-to-play-with-me stage.
Regardless, there is one thing that I DO know for sure. Like any other kid, Simon has the right to have fun -- to engage in extra-curricular activities that aren't therapy, and to be around other kids like him. Therefore, when I saw that a local magazine was sponsoring a summer camp expo this weekend, and that they claimed to have a camp for EVERYONE, I drug the family out in the rain to see if there was a chance they might have something for Simon.
When we got there, we found rows upon rows of tables advertising all manner of camps for "typical" kids, tailor-made to appeal to burgeoning talents and physical prowess. In this environment, I found myself grateful that I'm also the mother of a slightly advanced "typical kid," or I would probably have found all those options far more depressing than enlightening. Sort of a "look-at-all-the-cool-stuff-your-kid-can't-participate-in" gauntlet. As it was, I did find three camps that seem great for Livy: Art Camp, World Peacemakers Camp, and a Math Camp. Olivia also scored a ridiculous amount of swag for both herself and Simon.
I was starting to lose hope I'd find anything for Simon. Indeed, it wasn't until I got to the BACK CORNER of the very large and crowded hall that I found a cluster of camps for children with special needs. (Don't get me wrong, I'm glad they were there. But seriously -- the back corner?!? Once again, I digress...)
Unfortunately, Simon is too young for all of the camps we found. However, I did get literature from a couple of organizations, like The Arc, which is an advocacy group for all people with developmental disabilities; and Pathfinders, an Autism group that sponsors family programs. Neither are specifically for CP, but hey, it is a start.
Then, I found something amazing: A BASEBALL LEAGUE!! For children as young as five! And, when I explained to the guy at the table that Simon was a lot younger than five cognitively, he smiled broadly and told me to come out and give it a try.
"Everybody gets to be a part of our league" he said, "Everybody can dream. We don't turn anyone away." (why do I always get teary when people are nice to me?)
Then, he handed me a flier, full of photos of smiling kids wearing brightly colored "League of Dreams" T's and baseball caps, which would (of course), be adorable on Simon. But, unlike the rows and rows of "typical" sports-clad kids I had just walked through, which practically yelled "Not for Simon" from their glossy surfaces, some of these children had wheelchairs, some had walkers, and some had leg braces -- just like the ones Simon wears. They also all had broad smiles, just like Simon's.
Who's ready for some baseball?!