Friday, February 10, 2012

The Search for Serenity

We went back last week to mall with the little play area, the one that used to have the TV blaring nearby that would distract Ethan and only Ethan. This spot has one of those spinning wheels with balls inside that Ethan has always and forever gravitated towards. Sure enough, as soon as we walked in, he headed for the wheel. Other kids played in the toy boat and crawled through the log tunnel. Spin, spin, spin went Ethan with the wheel. More kids slid down the slide and chased each other. Spin, spin, spin. Then he was Zelda, making sound effects only he understood, pretending to hit the wheel with his sword, frightening the little ones watching him.

And in that moment, despite all the strides that Ethan has made, I felt that familiar frustration. Two-and-a-half years of therapy and getting down on the floor and interacting whenever we can, of encouraging social exchanges and creative play. How is it that some things can change so vastly while other tendencies hold fast? More than two years, and still here we were with the wheel.

Now that Ethan's in school in the afternoon, we can take advantage of some of the playgroups the town offers. In the past, this would have been an impossibility. In the past, just getting him in the room was a challenge. These days Ethan enjoys almost anything with structure. Give him a circle time, a simple craft, a snack, and he's golden. It's the free play that's still a challenge. At the block table, he wants to smash the blocks for the pleasure of the loud noise that will make. Or he will find an electronic baby toy and want to play it over and over and over. By himself. Not all that differently as he used to do when he was 2, in the waiting area where he received his outpatient therapies.

"He initiated play with a peer for the first time!" his teacher wrote in his communication book back in October. Here we are in February, and I asked the other day how things were going for him, socially.

"He's coming along," she answered in that slow measured voice that told me she wasn't lying, but trying to put a positive spin on things. "Especially on the playground." She then told me about the day before, when she had reminded him he had to ask a friend to play. Four months later. He still has to be prompted. My boy who memorized his upper and lowercase letters in a week or two still doesn't know how to ask someone to play. The fact that he even wants to ask is a big thing. Yet often I still see that he's perfectly content being on his own, focused on things rather than people.

I often hear in my head an excerpt from an incredible essay I've referred to before, by a mom with a son who happens to be named Ethan and who has autism, who wondered for the longest time why he would learn and grow and yet still be so, well, autistic.

The answer, I've finally learned, is simple, she wrote. This is the way autism works. There are roadblocks in the brain, mysterious and intractable, and for some children no amount of work or determination is going to change that.

I can see it all laid out, clinically sometimes. Ethan rarely has huge meltdowns. His sensory issues have greatly decreased. But I see the words in my head, stamped on an evaluation page. The "core deficits" (oh, how I hate those words, those cold, harsh, limiting words) are still there. The trouble with relating to others. Lack of imagination. The limited play skills, the repetition.

Sometimes this all feels like a confusing game. There will be the special ed. teacher talking about "cutting him loose" from special ed. at some point and the aide who wondered if Ethan would be attending Anna's private school (meaning some part of her thought he could handle it!) and my mom, her own experience with autism and my brother being so vastly different, talking about how Ethan is basically not much different than a typical kid.

And then there will be Ethan, needing me to tell him how to play with his toys, getting excited about the CBIA health connections theme song on the radio, counting the beads on the toy while other kids are talking in the school hallway.

"He's come so far and he's so close to being a typical kid!" I was saying to Dan the other night.

"No hon, he's not," Dan answered, gently. "He mimics what he sees. He learns to adapt. But he's wired differently than we are."

And with that all I could think of was another line from that same essay, the one titled "Accepting Ethan" --

I’ve also learned that at a certain point fighting the autism begins to feel more like fighting your child.

I think of those words again and again. To me, this is the great question of the autism we live with, the autism in our family's little world. How do I know when I've crossed the line from trying to help my son to trying to change my son? How do I let him be who he is while helping him to learn to adapt to this world he has no choice but to adapt to, at least in some ways?

How many therapies are enough, or too much? How do I let him be just who he is, even if that means opening him up to ridicule as he gets older? And how to I reconcile my beliefs about what God can or can't do for Ethan with what is?

Why does it feel like, no matter what I do, I'm giving up on something?

Maybe it's because I have to.

I have no pat answers, no specific solutions to these questions laid out before me. All I know is that above all, first and foremost, I just have to love. That's what we are all called to do in this life. Love, and remember the words of this timeless prayer:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

1 comment:

Floortime Lite Mama said...

OMG Deb this is a FANTASTIC post
"I’ve also learned that at a certain point fighting the autism begins to feel more like fighting your child."
R has a lot of autism so I totally see this
I once wrote a post that made several people really angry on why I dont hate autism
I just adore the journey you are on
Ethan is a lucky guy and he is doing great