Thursday, January 01, 2015

Happy New Year!

Of course these too-infrequent blog entries must always begin with a little self-laceration, because it kills me when I see how long it's been between updates, so let's just get that part over with, shall we? Deeply felt thanks and apologies to anyone who has been thinking of Callum and checking in here hoping for news ... I think last year I made a resolution to keep this more frequently updated. Guess I'll re-resolve that one for 2015. 2014 was overall a good year for Cal. His surgery and recovery went so much better than it did in 2013, and the first half of third grade has been generally really good - great new homeroom teacher, wonderful new one-on-one helper (hello Marlena), continued commitment, flexibility, and excellence from the teachers and staff we already knew at Chatsworth, lots of sunshine and open space in the classroom (it matters!), great grades and academic progress, without too much in the way of serious illness (and we've been able to avoid hospitalizations and deal with it at home when Cal has been sick). Knocking on wood as always. It took my breath away a little to see him start this school year with a real surge of confidence. I guess it's an age thing, but at the end of last year he seemed subdued and somewhat ambivalent about school, whereas this year he has been on fire since day one. An exciting difference and one that I guess no single factor can really explain. Last year he ended up appointing himself school safety patrol, a self-conferred authority role which put him more in league with grownups around him and meant that he was constantly reminding other kids not to run in the hall, etc ... cool in some ways, but also a little worrying for a parent - at times he was quite a little narc! - this year he has been treating his peers much more like peers, which is encouraging. He's also been impressively forthright in his encounters with people who don't know how to approach him because of his obvious differences. We are so proud of him, in all things of course but especially in this. We were also lucky to find, through our REM caseworker, a great new PT who accepts our insurance and will work with Cal at the house. Since the surgery in June, the biggest news is that in July we went to Kennedy Krieger to look at a new power chair for Cal, as he's really outgrown the one he currently uses. It takes an age for all the red tape to clear, so we're still waiting for it to arrive 6 months later, but we're all really excited about it. The new chair is a Permobil M300, which will add vertical movement into the mix, so Cal can move up and down to be at eye level with his peers (in his current chair he is always a little bit above and apart, which is not ideal). Cal will also be in total control of this one: speeds, incline, even on and off - all of which are parent controls, not accessible to him on his current chair. Now all we have to do is actually GET the thing.
Other highlights from 2014 included trips out to Sugarloaf Mountain, the Maryland Science Center, Fort McHenry, and the inauguration of what we hope will be a family tradition: a Fall camping trip to Cape Henlopen DE.
A lot of Callum's time is spent on his computer (Minecraft, with all its many mods, has been the main obsession for months, but he is generally game-crazy as any kid his age ... OK, probably more game-crazy). Janet and I have been following some SMA support groups and people are always comparing notes about assistive tech, and all the challenges of access to regular kid stuff that the able-bodied take for granted ... like many, we had high hopes for the iPad, but in the end a desktop Mac mini has been his best resource, with a switch interface for clicking, and a Kensington trackball mouse. The wireless Mac keyboard has a light enough response that he can use it, and he's become really adept at reconfiguring game controls to the keys that are easily within his reach. We finally got Dragon Dictation installed on his Mac so he can do homework assignments by voice rather than hunt-and-peck on the onscreen keyboard, or with one of us transcribing for him. He gets annoyed at Dragon pretty quickly when it transcribes incorrectly, but we've been making progress and it's wild to see Dragon "learning" Cal as he gets more comfortable with it. He's also been doing a little drawing with Sketchbook Express. We can also get e-Books from the school library and the Baltimore County public library ... but it's a hard slog to get any 8-year-old to read from his computer screen when he could be using that computer to launch rockets in Kerbal Space Program instead. Cal turns 9 in a couple of weeks. And we go onward into 2015, thankful for every day.

1 comment:

A. Tenley Moore said...

Callum's story is truly moving and inspiring in so many ways. I have an incurable disease too & today has been especiially rough & sad, but Callum's story has uplifted me with his smile, and how he looks past his illness by looking forward to exciting experiences, like 3rd grade! I feel it's no accident that I followed a link to your blog thru Wikipedia. Was there checking updates for a band you engineered, Lemuria, and Sheena Ozella (who, on 9/15/15, is marrying my son, Chris, of coke bust, Rememberables, former magrudergrind drummer). When I was diagnosed w Lupus, my family & I were terrified. In 17 yrs, I'm still trying to tackle symptoms & the sadness. A quote by my doctor lifts me up sometimes – "don't worry so much, humans don't come with expiration dates". Thank you for sharing Callum's life with us! He is an inspiration to us readers, whether you are healthy or not! I look forward to your next post & photos!

Asia, Olney MD ⭐️⭐️⭐️⭐️⭐️