Two Simple Experiences
Sometimes I write about issues. Today, I’m going to write about simple experiences in the life of my daughter. Two of them, to be precise.
Schuyler’s participation in band over the last few years has been one of the most persistently positive aspects of her school life since she left elementary school and the protective walls of her AAC class. When she was in middle school, Schuyler was fortunate to have two band directors who were deeply committed to giving her a meaningful participatory experience. She didn’t become a child prodigy or anything, but she found a place where she could feel closely supported and safe and… not weird. Or less weird, anyway.
Now that Schuyler is up to her eyeballs in high school life, marching band has become something of a sink-or-swim experience for her. This has resulted in a few stumbles, such as when she took the field at last week’s football game with big floppy shoes that were not just untied but actually unlaced because she couldn’t do it and, for whatever reason, she couldn’t find anyone to help her while the band was getting into their uniforms. The new independent model of Schuyler 2.0 has some bugs to work out of the system, but she’s getting there.
This past Saturday, Schuyler and her fellow percussionists participated in a drumline competition. Julie and I have endeavored to give Schuyler as much independence as we can, even after the previously mentioned marching clown shoes debacle, but since the drumline wouldn’t be taking the bus from the high school to the stadium, one of us was required to be on hand for driving and general lurking about. I’d get to watch her from a short distance as she went through almost the entire experience, and without being That Dad.
What I saw confirmed my quiet high hopes for Schuyler.
Was she perfect? She was not. Far from it, actually. I watched Schuyler struggle to manage her equipment and even put on her uniform. And I saw just how much difficulty she has with her music as she tried to keep up with the players around her. Band is difficult for Schuyler. She works hard, not necessarily just because she’s such a conscientious band member, but for the same reason jumping into the deep end of the pool might serve as a good incentive for learning how to swim. Schuyler doesn’t want to drown.
The thing I saw when I watched Schuyler go through the experience of drumline contest was not that she got everything exactly right, but rather how she took on the tasks in front of her as they came. It didn’t matter whether or not she dealt with those tasks smoothly or just managed to get through them without too much drama. The point was that she navigated some tricky waters, and she almost never stopped smiling.
I watched Schuyler work hard and do some great things, and I watched her trip up a few times. Most of all, I witnessed her happiness, and her moment-by-moment pride as she got through the morning.
Later that day, the two of us went to lunch. Schuyler brought out her iPad, and when we got to the front of the line, she tried to order her food. I say tried, because when she touched the screen, it didn’t speak. The girl behind the counter looked on expectantly, with a glance at the line behind us, and believe me when I say that in the past, this would be the point where Schuyler would fall apart and ask whoever she was with to step in and either help or order for her outright.
But when Schuyler glanced over at me, I shrugged and said, “Let’s take a second to figure out what’s wrong.” The girl behind the counter could wait, and so could the people in line behind us. I refused to let anyone rush her, and honestly, no one seemed in a particularly big hurry.
Given a little patience and some breathing room, Schuyler relaxed and helped me troubleshoot her technical issues. We reset the Bluetooth connection for her speaker, cranked up the volume, and when the girl still couldn’t quite hear the iPad, Schuyler politely handed her the speaker and let her put it to her ear. When her order was finally taken, Schuyler took her speaker back and looked at me with something akin to smugness. A small problem stayed small, and that might seem like no big deal at all, but it might have actually represented something of a first for Schuyler.
So there you go. Two simple experiences in the life of a little girl with some daunting challenges and a big heart. A life well-lived is constructed of such moments.
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Yay for Schuyler! ;-D
Teenagers tend to be self-centered… by which I mean, pre-occupied with their own self-perceived “sink or swim” challenges. Maybe if the band leaders put it to them that making sure a girl with fine motor deficits is good-to-go when they march onto the field IS one of their challenges to meet as a marching band member, this won’t happen again?
I’m not a musician, but would it be possible to write arrangements that she CAN keep up with, while also contributing musically to the piece being played? Like if she played every other note, allowing her to stay on tempo with the band? I dread the thought of Schuyler being asked to stay home because there’s an important competition at stake, or her overhearing angry comments that she caused them to lose to another band. And perhaps not just overhearing them… 🙁
I am a musician with a disability–many, actually. One of which is dyscalculia, which means, basically that I have dyslexia with math. I can’t see the music the way that most people do. I have a great sense of rhythm and tempo, and, I am not able to “read” music. That said, no, it doesn’t work to only play part of the tune. It’s performance, and it COUNTS. I can make practice time matter, I can accommodate for myself all day long in practice time. And, rehearsals are performance, because I HAVE TO be on par with my peers, or get bumped. Performance is performance, period. I do it because I love it, and sometimes, life is just not fair. At the same time, I don’t put up with being bullied. No reason for that. Music is a passionate experience, and, while i might have to use my wheelchair on a flat surface with a ramp, if I am in a ballet, I am expected to dance. Good Luck and don’t break a leg!
Ruth,
I concede your superior musical knowledge– but doesn’t orchestral music involve some musicians “sitting out” part of the piece at different times, or playing different elements of the same piece to make up the whole?
https://www.youtube.com/watch?v=X6ukXYOs9sI
Though if Schuyler is managing to do her job– “without too much drama” and enjoying herself, maybe it IS better not to simplify her part. I’m just brainstorming hypothetical solutions– it’s what I do! ;-D
I think my comment is that, even within the realm of Texas high school marching bands–which I understand can be serious business–high school marching band is…well, it’s high school marching band, I don’t want to say it’s “not important” (I’m over 10 years out of high school and my friends who were band geeks still identify heavily with that set of experiences), but Schuyler is important too. What she contributes to band is important, even if she doesn’t play perfectly. There’s a balance that has to be struck between enforcing standards for musical performance, and understanding that no musical performance is more important than a person.
Hi, Astrin, it depends on the music. If it is played “as written” then that is how it is played. Nice to make your acquaintance. i can share that there ARE ways to have reasonable accommodations in the music world. My dis-abilities are not the same…I sing and have vocal cord dysfunction..Even in a choir I have my own microphone. That said, one is still part of the whole. It can be a fine feat to discern where the accommodations can be. My lived experience…most of my musical peers understand the microphone, but I still need to be able to sing in tune…not missing a note or a breath. Good trick when the voice wants to fail at random. Peace!
One of the things my family has always been stubborn about is that my sister orders for herself at restaurants. It’s good practice for her, and she loves to be social and meet new people anyway; and I don’t think it hurts the wait staff either to take a little extra time, or have to use their ears a little bit more. And 98% of the time, the wait staff is wonderful and patient and understand without being told that yes, this girl with the obvious cognitive disability is in fact ordering for herself, and they treat her like the customer and ask her how she would like her hamburger cooked or if she wants ranch with her fries, and only look to us if they really can’t understand what she’s saying (her disability accents her speech pretty heavily). And from my years in food service, I can tell you I’d way rather have a nice customer who needs a little extra time and who orders atypically (like through a speaking device) than deal with a customer whose IQ is perfectly normal but who has decided that today is his day to be loud and abrasive and rude. I don’t know what you do if that guy is standing behind you in line, but from the perspective of the girl behind the counter, Schuyler is totally cool taking as much time as she needs. At least she knew what she wanted before she got to the counter! She’s ahead of half the population on that score. 🙂