I am grown up and aware enough to realize that the needs of all children change as time passes. This holds true with Jake, but the path is different – it’s not a slow, but gradual progression from complete dependence to complete independence. We regress. We learn new skills, appear to master them, and then lose them all together in times of stress and life-change.
But, Jake does have rhythm. He can sing on key and has great pitch (says my wife, who is also a masterful vocalist). She says I’m tone deaf. She’s probably right. Jake’s language is largely unintelligible, and he won’t sing on command, so chorus is out. He can, however, play drums.
Percussion is a great place for a kid like Jake, albeit with a few drawbacks:
He uses his Winchester shooting headphones in everyday life.
He hates loud noises.
He hates crowds.
He hates performing in front of people.
He hates praise.
All of these factor heavily into playing in a band which routinely performs in front of people.
Jake has a one-on-one person with him at all times to help him navigate the complex social and educational world that is middle school. This 1:1 help extends to after-school programming. As you might have guessed, Jake’s not overly social. He doesn’t read non-verbal cues and doesn’t care to carry on much of a conversation, even if he can which makes being his friend difficult. Band allows him a chance to do kid-things with kids.
His first concert, in which chorus is mandatory, was pretty bad. He stands with eyes closed and doesn’t even try to mouth the words. He is held in place on the risers by the only grownup on the risers – his aide. As the concerts progress, he gets somewhat better. Last time he was in chorus, he was able to stand NEXT to his aide without being held onto, and he even peeked at the audience a couple of times, and mouthed the words. If he sang, it was too soft for anyone to notice, but it was improvement. In Autismland, you don’t always look for goal achievement, but progress towards “normalcy.”
In band, he stands in the very back of the ensemble (which is where the drums go, not because he’s Jake), and plays his snare drum. In the beginning, he’d stand there with eyes tightly closed, and have his aide move his arms up and down to the beat of the piece the band was playing. He gripped the sticks, the aide would play the tune. He can do it on his own time, and in a private place, but adding all these pieces together is hard.
Fast forward to Spring, 2014; his fourth band concert. Jake’s opening up a little bit socially. He’s becoming slightly more aware of how he fits into the world. His parents have been parents now for almost 12 years, and have learned a few things – namely how to motivate this kid. For his birthday in June, he knew he was getting a Kindle Fire HD. When it arrived at the house in its signature Amazon box, he recognized it right away and opened it up, asking if it was his. We never even tried to hide the box. We had no idea he’d open it. He’s smarter than we give him credit for. We told him he could have it early if he did a good job in the concert. He considered this, and agreed.
As concert time drew nearer, the details of the arrangement were fleshed out. He didn’t want to be taped. “Don’t tape Jake!”, he would cry. “Sit in the bleachers and keep an eye on Liv and Gabe.” We’ve always filmed his performances. Not this time. Beth considered getting someone else to covertly film him, but I convinced her that if he was able to verbalize this assertion of independence, than we should honor it. Beth countered with the demand that he would have to play “Big” so she could see his arms moving. At last year’s winter concert, he stood alone, but moved his drumsticks so minutely that I doubt his snare made any noise. He grudgingly agreed to this new request. We had been reviewing our social story for the concert for weeks, reminding him about the prize – keeping him focused.
When concert day came, Beth even brought the Kindle with her into the audience. It was fully charged and registered to Jake. We were opting for a pressed white shirt, open collar and untucked, but he insisted on buttoning it fully and wearing a tie. He was all business. He even approached us in the bleachers and said, “Say ‘now go out there and show us what you can do!’” We did, and he saluted and gave a sharp, “Aye aye, captain!” You’ve got to love a kid that comes with his own motivational speech.
In a last ditch effort, he begged us not to look. “No peeking!” he chastised. “Fat chance!” we replied. He took his place behind the snare, and adjusted his music stand “up” to give him a little more privacy from the audience. At first I thought he was looking to his neighbor because he didn’t have sheet music, but Beth pointed out that he was simply NOT looking at the audience. Liv was strategically placed to watch his every move. Mom waved the Kindle in the air to remind him of his duties. The music started, and he played! Not in big, bold strokes, but he played nonetheless, and did so WITHOUT manual assist, WITH his eyes open, and WITH enough flourish to fill our hearts with joy.
When the concert was over, he rushed to us and exclaimed, “I’m a drummer-man! I’m a drummer-man!” We gave him his Kindle (along with a dozen hugs and kisses), and loaded up the van to come home. On the way, he turned to Beth and said, “Say ‘they grow up so fast’.” She did. When he asked if he was taped, Beth told him he wasn’t, and he threw up his hands in exasperation and exclaimed, “I don’t believe this!” Now that he’d done a good job, he wanted to see it for himself. I’ll never figure this kid out. But I do know this: he’s growing and learning and changing right before my eyes.