Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Sunday, May 28, 2017
An Exquisite Kind of Grief, or I Hate Change, Part 13
My mother-in-law's favorite cartoonist is George Booth; this cartoon is her favorite, ever. I read The New Yorker for many years (I gave it up about 6 years ago because it was always so damn depressing) so I was familiar with his work, but I don't think I really appreciated his perspective when I was younger. When you are young and fresh and just out of school and starting your marriage, you imagine that someday you will reach this level of calm or balance or happiness or SOMETHING, and life will be ideal. But when you're older (41 and counting), you realize life is never going to reach this pinnacle of perfection and stay that way permanently. It's going to be a series of compromises and adjustments, especially when you don't get the kids you expected. George Booth specializes in drawings of real people (who may or may not have a lot of cats), and I appreciate him more now than when I was younger and still deluded about what it means to be an adult.
So, last week was Spring Music Concerts for both children. Shout out to my parents who never missed a one, which with 3 very musical kids, meant for a lot of really boring and painful concerts with a few good ones sprinkled in there at the end. Miranda had her fourth grade school choir concert, which was lovely, but we had to sit through the beginning violinists first. It was only fair; last year she was one of those beginning violinists. That was Monday night.
On Wednesday and Thursday mornings, Archway Lower School had it's spring musical show. They run it two days in a row to help out the parents with difficult schedules and, probably, to give the kids a chance at a do-over. I went Thursday morning because I didn't want to miss my Bible study on Wednesday. I was hoping Marshall could come too, but Alex nixed that. He only wanted me to be there. (Alex has been having some, "I don't like you, I only want Mom" issues for the last year. Some of it was probably because Marshall was gone so much last year--his father was dying; that was the way it was--but there's also some teenager obnoxiousness mixed in there. When I came home from the ladies retreat last Sunday, he was more upset with me than he's been in a long time.) Anyway, on Thursday morning, I made the 40 minute drive to Atco (it's almost 18 miles, door to door) and tried to "gird my loins" for the performance.
This is not like sitting in a room of 25 neurotypical third and fourth graders scraping their way through Frere Jacques on violin. That is a painful experience because they are beginners and are really still young children. They are trying something extraordinarily difficult and still only barely managing to produce notes. But if they practice a reasonable amount, they have the opportunity to be much better.
Concerts at Archway are painful to watch and listen to because they reveal just how disabled these students are. There are several classes of higher functioning kids where they do produce something resembling music, but that is the exception. The music teacher at Archway is excellent, truly. Each classroom is responsible for performing their own song and then there are a couple of other special solos or trios or whatever. This means that everyone participates. Everyone.
Alex played drums for his class song, which was "Man in the Mirror." Three of his classmates took turns singing the chorus and a few verses. It was actually pretty good. And then Alex did a trio with his best bud and another friend, some Dvorak (currently, his favorite composer, after John Williams' Star Wars soundtracks, of course). Alex and best bud played piano and their other friend accompanied them on string bass.
Now, since Alex is mine, I happen to know this happened because of 3 months of practice in private music lessons on Saturdays. 3 months worth. Are we back to ABA territory? Oh, yeah. And Alex has actual musical gifts, including perfect pitch. But the autism "gets in the way."
I actually didn't find this year's concert as emotionally crushing as last year's, which means my perspective is improving. For all of these students, this is really hard work. They work for months on this one piece of music, just for these performances. And, honestly, I clap enthusiastically for each and every one of them. One of my favorites this year was a student who bounced on a small trampoline while he played his bells with his class. You just do what works.
But there is still that exquisite kind of grief that you feel when you acknowledge the disabilities of these students. When you hear the other parents weeping because of what their child has achieved, which should be applauded, even when you know what is lacking. You can forbid everyone else in the world to compare your child to neurotypical children, but you can't help but do it yourself. For all that Alex can and will accomplish, it will always be "classified," that is, conditional to his diagnoses.
There are plenty of people who will be outraged that I consider people on the spectrum "disabled." Yes, Alex's brain is wired differently than most. Yes, there are plenty of ways in which he "passes for normal." But this is a kid who is so obsessed with the end of Return of the Jedi that he can narrate it to you, with all of the correct drama and inflection, timed perfectly to the soundtrack. Because he does this at least four times a day. And he is so opposed to trying new things, even new media (Episode 7 and Rogue One are so not acceptable, even though he can tell you in detail how incensed he was at the death of Han Solo), that he just cycles back through the old ones, again and again. I was not happy to see Max & Ruby come back into rotation this week; I was tired of it 6 years ago, although I do kinda miss Screaming Green Alien Gorilla. But only slightly.
Somehow there has to be an emotional balance between accepting and loving the kid that you have and mourning the loss of what he could have been as a neurotypical kid. But I haven't found it yet.
Posted by Sarah Boyle Webber at 5:08 PM
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