How to Get Your ASD Kid Involved in Extracurricular Activities, or, 101 Ways to Increase Your Stress Level and Feel Like a Failure

First, there was gymnastics with a three year-old Sky who darted in and out of tumblers doing floor routines at breakneck speed (something that hadn't improved much when we tried again at 7). He was the only boy, and also the only kid who adamantly refused to get out of the pit full of foam blocks. Then, there was T-ball, which he hated and turned into an exercise in daisy seeking and butterfly chasing.  After that was basketball which seemed to have  just the right amount of sensory overload to send him pin-balling off all the protective mats covering the walls and surrounding the goals. And, soccer which sent him pin-balling into other children. Swimming went okay until the instructor turned out to be a jerk. Tennis seemed promising one summer, but the next summer, the other kids were older and not at all patient with a boy more interested in studying how the balls bounced than he was in hitting them.

The only athletic endeavor we've tried that was immediately and (so far) consistently successful is trampoline. Sky loves trampoline. He begs to go to trampoline--which makes perfect sense for a kid who was born to bounce. I'm very grateful for trampoline because it introduced the possibility that sometimes things can just work.

Most times, though, they go like it did with piano....

(If this was a movie instead of a blog, you would now see images and hear music that would alert you to the fact that we are going back in time--to the beginning of a very long story.)

When Sky was four and we still lived in Tokyo, he tried piano lessons for the first time. I had a hunch he had an ear for music because he could pick out the separate instrument lines in a song from the radio. Plus, he seemed to have perfect pitch. So, every Wednesday, I stuck a helmet on his head, strapped him onto the back of the bike, and pedaled him through the heart of Ikebukuro, around the station to a back alley near Sunshine City and a Suzuki-style piano school.  Besides the harrowing bike ride, what I remember most is that Sky was much more interested in figuring out how the piano worked than in how to play it.

Four months later, when we left for the US, we stopped piano and didn't start again until Sky was in second grade. This time, there was no baby grand piano and therefore less temptation to peer inside. Despite the fact Sky seemed to pick up the concepts quickly, he hated practicing, and some days we spent $14 just to watch him slide off the bench onto the floor, play hide and seek, and fiddle with the metronome.

So, when we moved (again), we stopped lessons (again). Only, this time, I was pretty sure we'd go back to it because he really did seem like a natural. Still, I didn't want to push it and decided not to start lessons until taking them was his idea. I waited, and then I waited some more. Then one day not all that long ago, I  was greeted at the door by a Sky who excitedly proclaimed, "Mom, I've taken up piano again. Listen!"

He'd taught himself to play "Ode for Joy" and played it for me from memory.

Not long after, Sky started taking lessons again--this time, with a college student named Abby. When we were showing her his old books, I discovered that "Ode to Joy" was the last song in the second book, which meant that Sky had gotten through two years of books in eight months of lessons (and pretty much while I wasn't looking).

This go around, I think I have a better idea of what does and doesn't work for Sky when it comes to learning to play the piano. What does work is giving him the basic concepts and letting him figure out the rest. What doesn't work is trying to force him to sit still and focus through 30 minutes of piano instruction. The first lesson, after I told her this, Abby asked Sky what song he wanted to try, and then proceeded to help him figure out how to "compose" the first several bars of (surprise, surprise) the Star Wars theme song. The second lesson came right after a major but completely unrelated meltdown at home. When Sky refused to go to piano (because he was so upset), I pointed out that playing music might make him feel better. And it did.

I have no illusions that piano will always go as well as it has the past couple of months (though I hope it does). After all, it took three tries over five years in two different countries and two different states for him to finally enjoy it. That's the thing, though--sometimes it can take a really, really, REALLY long time for something to click with Sky. But, when it finally does, it's golden.

Groundhog Day

In the middle of December, Ren went to the spine surgeon for his six-week follow-up appointment. By then, he was past most of the hard surgery recovery but still experiencing enough leg numbness and pain for the doctor to postpone physical therapy and prescribe six more weeks of the same restrictions: no bending, no lifting, no twisting. The ol' BLT as we call it. The doc might as well have told Ren not to breathe. In the car on the way home, I thought of Punxsutawney Phil and his blasted shadow. We'd just been sentenced to six more weeks of winter. 

The news disappointed us. I wasn't sure Ren could sit on his hands for six more weeks, and I certainly didn't know if I could pull off another month and a half of single parenting. With no other option, we hunkered down to face the long, dark winter and somehow managed to have a relaxing Christmas and a fun winter vacation with the kids despite the fact we couldn't go anywhere or do anything. 

What we tell ourselves is that the suffering is temporary. That soon things will get easier. That even when the groundhog sees his shadow, spring isn't far behind. 

Spring has to come eventually, right?

But then it happened just like it happened before--Groundhog Day. Not Punxsutawney Phil's Groundhog Day, Bill Murray's. Life began repeating itself, and not in a good way. For weeks the back improved, and then one morning it didn't. In fact, it got much, much worse.  Just like it did the two times before.***

And, here's where my narrative breaks down a bit. See, I'm not sure how to spin this particular story. It feels a bit like a tragedy, but one that no one would really want to read. There are no suffering children or underdog heroes, who, though crushed beneath the weight of life's injustices, manage to persevere, overcome, and somehow change the world in the process. There is no real moral to this story. There is only a somewhat average not-so-all-American family choosing to keep showing up and to keep moving forward. 

Relentlessly. Repeatedly.

And, you know what? In the end, I really do believe that, despite the maddening repetition of some pretty unpleasant stuff, it will be fine. I don't know what that fine will look like yet, but I'm willing to bet, it's going to look different. 

*** I'm resisting the urge here to go into intricate detail about symptoms, procedures, and prognoses. Ren's not okay with that much sharing, so I won't give you all the gory details. I will say, however, that the beginning of the end was October 2011, and since then, we've seen skilled, conservative doctors who have done excellent work on a very bad back.