Friday, May 22, 2009


Summer, and do I dare say things are looking up?
It's been so long since the last time we updated this blog. And I always say it'll be more frequent going forward but ... maybe I am developing serious reservations about how much of our lives (as in, the lives of almost everyone we know) now happen online, or maybe there just aren't enough hours in the day. In any case, here we are at long last to share some good news, most of which has been long in coming. The big BIG deal is that Callum's power wheelchair is due to arrive - FINALLY - at the end of next week. Getting to this point has been a kind of slow-motion nightmare, in that we let our expectations get raised a bit back in October when the process began, and then when the red tape came along to snag and drag it all down, it was a bigger letdown than we were prepared for. In any event, we fought and slogged our way through it and we're told it will be here next Friday, which is such good news, especially as Callum is now asking about it a lot - there's a lot of "when I get my power chair" in the air.
The other good news is that Callum is finally going to get more physical therapy through the Baltimore County Public School system. When he turned 3, he transitioned out of the Baltimore Infants and Toddlers program (a state-sponsored program to help home-bound kids with disabilities - he had some PT, OT, and tutoring through this program, which was great). These services then became the responsibility of the Baltimore County Public School System, which uses an entirely different model (the "educational" model) to determine the level of services they will provide. Under this model the county only provides services which are pertinent to Callum's education - anything they can define as "purely medical" is not their responsibility. Which sounds reasonable when you put it in broad terms ... until you think about how literally every sort of activity has educational relevance for a 3 year-old. Anyway, initially this meant a severe cutback in the amount of physical therapy they were willing to provide. As in: they wanted to provide almost none. This brought out the fight in us, particularly in Janet, and we pushed back. A lot. And things have steadily been improving as we get to know the people involved and they get to know Callum. And the thing is, he is working with some really great people through the County, so we are very happy that he's getting more service hours, because we can see that more therapy time is actually getting really positive results for him. SMA Type 1 is not a diagnosis that engenders hope for positive outcomes from physical or any other kind of therapy. But if you just look at the diagnosis, and you miss the individual entirely, what good are you doing? And if there's one thing SMA teaches us, it's that generalizations don't work. So it's heartening to see everyone getting to know this amazing person who we are lucky to call our son, and seeing just how much good their work is doing for him.
On a lighter note, he had his first haircut back in March and it was a wild success all the way around. We were chewing the idea over for a long time, wondering when the right time would be, and whether it would be traumatic for him. But of course it was more traumatic for us than for him, and in fact the whole experience was really fun, and it seemed to unleash a more extroverted little boy.
He seems more tuned-in to music than ever before, and though his pitch is still pretty random, his rhythm seems really good. His OT, Dawn, brought a children's Casio keyboard with her this morning, and with coaching, he was able to play some tunes on it by himself. In the past we've tried and failed to find a keyboard that works for him. His hands don't seem to have enough "push" to activate the keys. But this is the first one we've seen where the extremely light touch of his fingers was actually able to engender a sound (that's why the Kaoss Pad has been so great - virtually no pressure needed - but it's mostly a funny noisemaker). Nothing beats a proper keyboard if you have an appetite to learn about music. He was STOKED.
He's been really into a song called "Struck Down," from the new Clutch record. He requests it over and over when we're in the car. To be played "very loudly." He first became attached to this song as an instrumental rough mix when I was in the middle of working on the record. Once the vocals were added and he first heard the vocal version in the car, he was affronted: "Dada! there's a man in the music!" But now he sings along with the vocal - phonetically, which is pretty crazy-sounding (sometimes like a very drunk Clutch fan, other times more like Dutch sound-artist Jaap Blonk). Hopefully it will be a long time before I have to explain the lyrics to him, particularly the exact meaning of the phrase "reefer madness."
We took Callum down to Wheaton today and it was great. Caterpillars and butterflies are high on the list for him, and Toni had clipped an article about the butterfly show that they do at Brookside Gardens, so Janet and Toni and Callum and I all drove down this morning and went to it. It's the most excited we've seen him about anything, ever. For days he's been talking about "the mariposas" and this morning he was even trying to cut short his OT session (which he usually really enjoys) so we could get on the road earlier. He was in high gear all the way down. Beautiful day, great park ... the highlight of this for me though was taking him on the really cool miniature railway they have there, which I used to go on all the time when I was a kid. I held him on my lap, so I didn't get to see his face well, but Janet said his expression was magical. It's a noisy train and he has a quiet voice, but I could hear him exclaim "this is awesome!" - which of course was worth the whole trip.