Thursday, February 24, 2011


At the Children's Museum today, I was reminded how desperate I am becoming.

There we were in the "space room," a beautiful cornucopia of cause and effect delights. There was billowing steam. Glowing crystals. Bubbles in glass tubes. And the balls that fly up the tubes and drop down through holes. Oh, how Ethan loves the balls.

A boy was beside him, a year or two older. He too loved the balls. Like Ethan he kept shoving them up in the tube without glancing at anyone around him. I noticed his intense pleasure in them. I noticed he and Ethan spent longer with them than any child.

Could he be one? I wondered. Could he be one with autism? I saw the boy go to the steam, push down the lever on the pipe and put his mouth on it, trying to taste. Seeking sensory input, we autism-savvy types might say. Or maybe he was just being a kid. I watched the way he said, "I'm tired of this place," not looking at his mom, aimless and meandering at any station that didn't capture his interest. The mom caught me looking at him. I felt like an idiot for staring. I'm not staring, I wanted to say earnestly. I'm searching.

I wrote about this last year ( I wrote about Jack, the boy I'm almost positive had autism, the one I spotted in the play area at the mall and who captivated my attention one morning. I wrote about wondering where all of the other kids with autism are, exactly. Finding the kids would mean finding their parents. Except -- I've found kids now, in Ethan's school. And not much has changed.

Every day I drop Ethan off at school and gaze out of the corner of my eyes at the other kids and their parents. I wonder which ones are special ed kids in the integrated classes. I say brief hellos to the parents of the kids in Ethan's class. And I wonder, once again, why it is so darned hard to get to know other parents of kids with autism.

Ethan's teacher talked about the school wanting to do more to get the special needs parents together. Right when he started school there were class parties for both Thanksgiving and Christmas. "You've got to meet A.'s mom," she told me. "It would be great for you two to connect." Except during both parties, Ethan wanted to run around and goof off, and I ended up chasing him. There was no time to talk to any of the parents. A.'s mom and I did speak briefly on two other occasions. She didn't seem that interested in opening up. Another local person with a child on the spectrum recommended by a friend didn't respond to a Facebook request. At the autism events I've gone to, I have conversations but never know how to carry them to the next level. How to keep in touch? People seem busy with their kids, their lives. No one seems to extend the offer first.

At the mall play area the other day, I saw a little boy a bit older than Ethan walk in and walk right up to the elevator. He was staring. He was mesmerized by the up and down. Only one other child has ever stood gazing so lovingly at the elevator. That would be Ethan.

On this day, Ethan was off playing, somewhat delivered from his elevator obession, at least at this location. "Ethan," I whispered playfully when he came to me. "Look at that boy watching the elevator? Go say hi to him." Ethan went over and the boy ran away, and then Ethan proceeded to watch the elevator. Then he ran away and I saw the boy wandering around, looking past children, walking a bit on his toes. I looked closer and thought with amazement, Could it be? He looked like Jack. The Jack. The Jack of my blog entry, who I had seen at a different mall not far from here a year and a half before. I'm normally horrible with remembering any sort of physical details, but that day was different. I had watched Jack intently and realized down deep that Ethan had autism, before he was diagnosed.

Jack! I so wanted to call out softly as he wandered by, just to see if he turned his head, if he offered any kind of recognition. I didn't dare. I looked for his mom, the tall, bubbly woman who had seemed so at ease that day. But no, Jack was with a man, his dad, no doubt. They didn't stay long. I watched after them as they walked away. I watched with a wistfulness that I can't quite put to words.

Thank God for the internet. Thank God for the support group I attend once a month. Thank God for friends in far away places with ASD kids, and those near who don't have children with special needs but are still caring and understanding to the best of their ability. Life keeps rolling by and we do the play areas and library and toy stores and museums, and still I look, searching for points of similarity, of connection. As I do I feel a little bit foolish, but somehow hopeful at the same time.


φ said...

I don't have any advice, consolation, or cheerful remarks. All I'll say, after reading through a few posts: keep searching, and keep writing.

Amy said...

I TOTALLY get this! Reality as we now know it.