Three Steps Forward, Only Two Steps Back

My 5yo son Drake has always been a challenging child. “Oppositional” is what his pediatrician called him at the three-year check up. Every year I’d ask the doc about autism. Every year he’d tell me not to worry. Then at the last one, I pressed him. “OK,” he admitted. “Drake’s a little different.” The doc advised me to increase his playdates to improve his social skills, decrease his screen time, and increase his physical activity.

When Drake returned for his third year of preschool (he has a late summer birthday; I delayed kindergarten because of his social issues), he had behavioral problems. His teacher and I sought help from the public school system. After a thorough observation, the team confirmed what I’d suspected–Drake was “on the spectrum.” High-functioning Asperger’s syndrome is a good approximation, though the education team was quick to say it wasn’t a medical diagnosis, only an education term to get him help in areas of difficulty.

I haven’t written about this because it feels full of land mines. Am I pathologizing my kid? If I write about him, am I pimping out his problems? Many who know us make it clear–politely or not–that they think Drake’s normal and we’ve been hoodwinked by modern fear mongers into pigeonholing our child. I’m also wary of blithely announcing “my kid’s autistic” because I don’t want to trespass on the pain of those families whose spectrum experiences are much more difficult than ours. But not writing about it has gotten to the point where I can’t celebrate really cool things, and that, I feel, is a loss to Drake.

Since late fall, he’s had OT and attended a social skills class. His communication has improved, and his formerly frequent tantrums are fewer and less intense. Every week a short bus picks him up and drops him off; he’s unaware of the stigma about the size of the bus. Last week, he got off the bus, then ran back to a window. Two kids from his class were inside, waving goodbye and calling to him, all smiles. He responded in kind. It was a sweet, genuine moment, all the more so because I know these kids struggle with social interaction and friendship.

The social struggles begin at home. Like most kids, Drake fights with his younger brother, 3yo Guppy. For years, now, a typical pattern is Guppy will cry, then Drake will scream because he’s can’t stand the noise. This cycle might sound funny, unless you’ve endured it as many times as I have. Eventually, at my urging, Drake would leave the room. At 3yo, though, Guppy still cries and screams a lot. A few times lately, Drake has followed my advice and tried to make Guppy feel better. He does this by quoting lines by the Swedish Chef from Boom Comics’ Muppet Show comic. That makes Guppy laugh, and the tantrum gets defused. It’s a bizarre, but hilarious, solution to the problem.

Another change got noticed by a friend. After a recent playdate, the mom sent me an email with the subject line, “Drake ate food!” She is well aware of the struggles I’ve had over my picky and painfully skinny little boy’s eating habits. That day, though, he ate everything she offered for lunch: sandwich, veggies, fruit and more. Amazingly, the trend holds with us, too. He’s sampled foods he formerly shunned, like tacos, spaghetti, salad and tostadas. He devours edamame from the shell. He recently pronounced something spicy but awesome. With food, as with the school bus waving and the Swedish Chef cheering, there’s positive change, and I’m cautiously hopeful of more.

It’s not all forward momentum, though. I heard the boys screaming at each other last week. When I went to investigate, I found Drake on his top bunk yelling, and Guppy wailing on the floor.

“What happened?” I asked.

“GUPPY WANTED THE FIREMAN. I COULDN’T FIND IT. I THREW BEAR.”

Translation: Guppy asked Drake for the fireman toy. Drake couldn’t find it. Guppy started to cry, which irritated Drake, who threw a teddy bear at him in anger, which made Guppy cry more.

I quickly located the fireman, admonished Drake for making things worse, and they both quieted down.

On a recent night I was making dinner, while the boys played on the back porch. I glanced out and noticed Drake throwing something into the back yard. I opened the porch door, and saw a pile of hair. Drake had decided he and Guppy needed haircuts, so he’d used his scissors. The results, while not terrible, were definitely choppy, and will need to be fixed by a professional.

That still leaves me one hopeful step ahead, though. I’m going to relish this as long as I’m able. And hey, maybe the next event will be a hopeful one too. Or at least amusing, if it’s not.

4 Responses to “Three Steps Forward, Only Two Steps Back”

  1. Queenie Says:

    Bravo. And now I am going to make sure to hide the scissors.

  2. weirleader Says:

    As it happens, I’m 2/3 of the way through The Speed of Dark, by Elizabeth Moon. I’ve enjoyed it for the opportunity to “peek” into the mind of someone with autism; from the foreword, it appears that she (Moon) really did her homework to make the characters authentic.

    Given your penchant for reading, I thought you might enjoy it.

  3. Becca Says:

    I know you struggled to write about this but I’m glad you did. For me, avoiding blogging about certain topics sometimes gives me the ol’ elephant-in-the-livingroom feeling.

    But then there’s oversharing.

    Blogging is like motherhood: it gets you coming and going.

    Bravo to Drake for working hard this year and for all his progress!

    Now that I’m in the thick of the “autism world”, I can look back on kids I knew in school who were most likely on the high end of the spectrum but were treated as “bad”, willfully disruptive, pains in the ass. These days they are more likely to get some help and some recognition that this is not a bratty-behavior, lack-of-discipline issue.

  4. girldetective Says:

    Alas, we’ve had a few more backward steps since preschool ended, making me even more sure I need to get him into social activities, not home with me while I try to keep up with the housework.

    I think back to the kids I knew in high school, and the three most obvious ones on the spectrum weren’t necessarily disruptive, just weird, and constant objects of derision. They’re also all dead, having killed themselves. Tragic, and all the more reason early help should be lauded, not downplayed as a product of hyper-worried parents.