Tuesday, October 1, 2013


"Ethan, are you going to live in your own house when you grow up?" I asked him the other night.
 "Yeah," he answered slowly. "But maybe it will be right next to THIS house."
 "And what will you do all day? Will you have a job?"
 "Fixing power lines!" he answered, almost silently adding a duh.
"And I will play games on the phone." Of course.
 "Do you think you'll get married? Will you have a wife?" No answer. Then he added -- "Maybe I will live in that house during the day. And then I will come back here at night."
I was reading another autism blog not long ago and this mom was mentioning that no one likes to hear when good things are happening, that she gets a lot more comments when she posts about a bad day or frustrating incident with her son.
As much as I hate to admit it, I get this. I used to scour people's blogs with an attitude. When they'd write about their kids' achievements and hopeful moments, I wasn't so much rejoicing with them as swallowing a bad taste in my mouth. Discouraged by my own child's diagnosis, I'd think, "What do YOU have to complain about?"
And I'm sure this happens with this blog, too, and in those times when I can't help but celebrate what Ethan is up to. There's this weird dynamic where I feel guilty for counting my blessings and guilty for not counting them.
There are moments when my breath is taken away...like when my son throws his arms around me and makes up little songs about loving mom, and I know I must stop and relish this moment because there are other parents of children on the spectrum who have not been given this gift.
And then there are times, fewer of them right now, but still there, when things still hurt. Despite my son's strides. Despite the fact that I know how far he's come and I know his potential.
Many days, I ask Ethan what he does at school and what he does on the playground. The answer about the playground is always the same: "I play by myself." What are the other kids doing? I never get an answer.
Last week I asked one of his teacher's about that, a special ed. teacher who runs his social skills group, which will be firing up again this week.
"Yeah, he does play alone," she acknowledged. "What can you do? That's how these kids are. I have another little guy a little older than Ethan who's always telling me that, how much he likes playing alone."

She went on to talk to me about how we can't make them want to play with other kids, and that what they can do is work on the social rules, on what's socially acceptable, and I knew what she was saying, and I knew in many ways she was right.

But it didn't stop me from crying behind my sunglasses, in the car driving away.

In that moment, I wasn't thinking about Ethan reading or being far ahead in math, of his skills building marble creations or natural talent in music and on monkey bars. I wasn't even thinking of his hugs and smiles or the fact that he does play with those who are familiar to him, on his own terms.

I just kept seeing recess on the playground in my head, and hordes of yelling, chattering, laughing, chasing kids. And my son on the other side. All alone.

I wondered what that meant, not just for right now, but for his future.

I didn't know which ripped at my heart more: that he was alone, or that he was happy to be alone, that realization that he truly is wired differently, that helpless feeling that I shouldn't want to change him and can't change him.

I knew I couldn't sit there and cry and cry, and the cerebral part of me knew there were so many other things about Ethan I could focus on rather than carrying an imagined playground image in my head.

A verse kept running through my head, that'd I'd been reading: "Praise be to the Lord, to God our savior, who daily bears our burdens" (Psalm 68:19). I knew I couldn't carry this sack over my shoulder on my own. This isn't something that magically disappears. I have to constantly turn it over, again and again and again and again.

My son right now blends in fairly well. He can talk to me. He's mainstreamed; he's learning. But he's still on the spectrum. He's still different.

I have to remember this. I have to remember there are others out there I have judged, with their kids or families with seemingly insignificant issues. Everyone, as the famous quote says, is fighting some kind of battle. Everyone is hurting sometimes.

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