Big Deal

20151101_174027I don’t write about my family as often as I used to – at least not directly. They get a nod, now and then, as the inspiration for a new idea or for their part in creating something, but, there was a time when depression, autism, and parenthood (all headliners in the show we perform seven days a week and twice on Sundays) were frequent topics for my blog posts.

The connection between today’s post and my making-something-of-it-mantra is a bit of a stretch, but it exists, if only because this is my life and I spend more time trying to make something of this than anything else.

My role as a parent is a big deal to me. The gravity of what I’ve taken on – preparing two human beings to successfully navigate this world – can be overwhelming. So, I try to keep my view on the big picture, not sweating the small stuff and focusing on major strides instead of little stumbles.

These days I have to sift through the murk of both puberty and autism when I’m parenting our older son (now 13). Middle school has been a huge transition, but also a time of incredible growth, and several of his teachers comment regularly on how well he’s doing and how far he’s come. Outside of school, he’s found some balance between what he wants to do (computer time, all the time) and what he has to do (homework and chores). He’s getting better about planning ahead for long term assignments and advocating for himself when he doesn’t understand something or needs help. And he recently had “the best day ever,” thanks to an uncharacteristically smooth day at school (no subs, no changes in schedule), having his name drawn to win a $10 iTunes gift card (the monthly drawing for people who turn in Box Tops) and a terrific presentation on a combined assignment in advanced social studies and language arts.

When I picked him up from school he announced, “I’m on cloud nine!” and then proceeded to tell me about his day. Declaring a school day more than “okay” is rare, but spontaneously talking about his day is unheard of. His classmates made a big deal about how good he looked (“the best dressed presenter in the entire 8th grade!”) and smothered him with compliments and applause. These reactions continued throughout the day, when they saw him in other classes, the cafeteria or the hallway.

I’d posted a picture of him on Facebook the night before – wearing his new pants, his button down shirt and his father’s tie. I wanted my friends to see how grown up he looked (including his fuzzy little mustache, his new glasses, and all 5 feet 11 inches of him). My friends, far and near, told me everything I wanted to hear. But here’s the thing: my typical brain knows that these friends say kind things about the children of all of their friends. It doesn’t mean they’re disingenuous, because I can keep it in perspective. Meanwhile, our son took all the praise he received at face value. It was more positive feedback than he receives in the average month, all for a 4-minute presentation. Now we have to help him reconcile the big deal made over him with the reality of his everyday relationships.

Our oldest son has never been invited to a birthday party or to a friend’s house to play. Never. Over the years, we’ve reached out and had a classmate or family friend over when his brother was having friends over, too, but none have ever reciprocated. He does not interact with friends outside of school – not in person, not online, not via text or social media or email. On the whole, I think he’s fine with that. Social situations and people in general can be confusing and unpredictable.

2015-06-017But this year I pressed him to exchange email and phone numbers with a couple of classmates. I told him how helpful it would be to have someone he can ask about an assignment he doesn’t understand or who can give him a copy of a worksheet he’s lost. It’s a life skill, I say. And, on some level, I must admit I’ve always hoped something like this might lead to something more social.

He dragged his feet. He put it off. Finally, I asked one of his teachers to be his wing-man and make sure it happened. He did it and he was rejected. He asked two classmates he likes and respects. They were polite, but declined, just the same.

“I don’t think I’ll have the time to respond to you.” That’s the response he got when he asked. And he believed it (thankfully), but I knew better.

Moments like this it’s impossible for me not to stand outside myself and see our son as others see him. I started thinking about the story that went viral (was it last year?) about the young man with autism who got invited to his high school prom. The young woman who asked him was beautiful. His parents were thrilled. The story was liked and shared and touted as one of those feel-good stories that reminds you there’s good in the world. But all I could think about was, “I wonder if he’s ever been invited to anything else?”

What’s the big deal about this boy being asked to prom? That kind of thing happens every day (well, at least during prom season). Oh, yeah. It’s because he has autism, which makes him an unlikely (read “undesirable”) prom date. So, wow, she’s extraordinary for asking him. What a lucky guy he is. That must have made him feel so good about himself. (Please tell me you hear the sarcasm in those comments.)

There is a level of condescension in stories like these that makes me want to scream, “The emperor isn’t wearing any clothes!” Don’t celebrate when the young woman with Down’s syndrome gets admitted into a sorority. You’re telling the sorority (and the world) they’re admirable for including “someone like her.”

Don’t tear up when you read about the boy with a physical disability who sat on the bench for every basketball game, but was allowed to play for the last full minute of the last basketball game of his last year in high school. You’re telling the coach (and the world) that letting “someone like him” play is unexpected and heartwarming.

And don’t overdo it when my son does a great job in a situation that could/should be difficult for him. Go ahead and be impressed, but don’t be surprised. Tell him he did a great job, but do it because he did a great job, not “a great job, for someone with autism.” Make a big deal over him, but remember it’s a bigger deal when you include him, invite him, and accept him all the time.

If at this point you’re confused and I’ve made you afraid to click “like” on any uplifting story you read on Facebook, here’s your litmus test. Whatever the situation, re-imagine it with a typically developing child/teen/person in the starring role. Would you cry, cheer, or celebrate them just as much? Then stop acting like it’s such a big deal when it’s a person with special needs.


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