So I haven’t posted anything about Carrie and her daily life for a while. Nothing overly dramatic was happening, but summer and fall were incredible times for her, in the best possible way. Our summer was spent traveling to her sister’s nearing-the-end-of-high-school camps: dance camp, theater camp, campus tours, etc. We practically lived in our 1966 Serro Scotty camper for the summer, and they’re memories I’ll cherish forever.
Of course, fall had to worm its way into summer somehow, and that’s because Carrie is finally old enough for marching band. That means she had to attend Rookie Camp, Drumline Camp, and then of course, Band Camp. Each of those ate a week of her life, but they all led to something really great for her.
A couple of years ago, Carrie indicated she wanted to be in the marching band. It wasn’t shocking, because her sister was a majorette and we were already attending every single band event that came our way. Carrie wanted to play saxophone, which was awesome since I already know how to play. But then it occurred to me: she would have to be able to march on the field while playing, and she would have to wear both the band shoes and the hat. We talked it out, and Carrie decided that she could not wear shoes (she only wears flip flops since they let her balance more easily…even all winter long and on rainy days) and she could definitely not wear the hat.
We spoke to the band director about our options, and she said that if Carrie played xylophone–or “pit,” as it’s known–she would not have to wear the hat and she could wear black socks and black flip flops with her uniform. Even better, she wouldn’t have to wear the gloves, which I hadn’t even thought about.
So in 6th grade, Carrie started in the beginner band at the middle school, learning the xylophone. I’m not gonna lie, she’s not musical prodigy like you see in movies about uber-talented autistic people. She’s perfectly good at it, but we won’t be entering her in any competitions anytime soon. Mostly, she is able to read music but doesn’t need to since she can memorize it very quickly. I teach her the music, she learns to play along with a recording of the band, and we’re good.
As for marching band, she’s done just as well as any other kid out there. Again, she’s not carrying the entire halftime show on her solo, but she’s done really well. I did speak to the director and ask that she go ahead and fill out a form for each band competition, letting the judges know about Carrie’s diagnosis. That way, if she did have a meltdown or walked away or just quit playing, they would not deduct it from the entire band’s score.
There’s another super fun thing about Carrie, and it’s absolutely blown us away. It has shocked her school and her community in the best possible way. She told us about a year ago that she wanted to be the school’s mascot, and it triggered a memory of an article I read about autistic people who found viable careers as suited characters. They apparently did really well while “hiding” inside the suit, and really came out of their shells to perform.
We spoke to the school, and the response was 100% positive. The only catch was they no longer owned a mascot suit. I jumped online, found a suit, saw the $800 pricetag, and fell in love with my husband all over again when he said, “Well, we have to do it. She wants to do this, and this is just like paying for baseball or majorette or cheerleading.”
So we own a suit now. The superintendent heard about it and offered to see what they could do to help foot the cost, but I realized that if the school or the system paid for the suit, they would have to open it up to anyone who wanted to tryout. Potentially, someone could take this away from her the next year. Therefore, we bought the suit ourselves and the principal can honestly say, “Sorry, that’s their suit. You’ll have to talk to them and see if they’ll let you, but I don’t think they will.”
Carrie has absolutely charmed the school and our community as Big Blue. She runs, she cheers with the cheerleaders, she attends all the pep rallies, she hugs children who want a picture, she throws a “dab” with all the kids who want to interact, and more. She even attended mascot camp at a nearby university and was featured in their pre-game show last week.
It’s been good for her and for the other kids, and for school spirit. She has to balance band and mascot, so she suits up for third quarter and walks around or joins the cheerleaders. She’s had to learn to take responsibility so she can be eligible to participate in both events, and she’s really made us even prouder than we thought we could be.
Best of all, I overhear the comments from students at the high school: “Dude, back up and give her some space. You know that’s the ‘special’ girl in there, right?” “Hey watch it, that’s Ann’s sister…remember?” “Hey Daddy, that girl at the back of the marching band? She’s the mascot, too!”
It’s been a simply amazing experience, for Carrie and for us as her parents. I’m so proud of both of my kids, and I know she’s doing good in the world by showing people what she–and others like her–can do.
Autism By Hand 