Wednesday, June 22, 2011

The Last Day

On Monday, Ethan's class held a picnic to celebrate the last day of school, and everything went wrong.

First was the fact that I didn't even know they were holding an official "pack a lunch and a blanket" kind of picnic, because I hadn't seen the flyer, just had a verbal invite from a teacher who casually mentioned the whole thing. For some reason I foolishly assumed this was just a little cheese and crackers occasion in the classroom, as the other gatherings had been.

Next was the fact that this whole picnic thing was just not part of Ethan's schedule. We have a plan when it comes to school, you see. On nice days we got out on the school playground for about a half hour, then hop in the car for home. On Monday, everything was different. Ethan was already hot and sweaty from playing with his class on the playground before we even got there. I picked him up and then told him we were going back outside to play. I tried to emphasize once again that we were going to stay for awhile and have something to eat there, too.

This worked for awhile but as he got hotter and more thirsty and just bored with the playground he decided he wanted to go. He decided this at just about the time the rest of the class came outside to begin the picnic. I watched, mortified as parents began arriving with their blankets and packed lunches.

"I'm hungry," Anna, who was with us as well, started whining. Then Ethan started asking for a drink. Meanwhile, his teachers were bringing out water tables and bikes for the kids to play with. "Time to go!" Ethan announced, not liking all of the hustle and bustle.

"We're staying here, remember?" I said for what felt like the twentieth time. "We're not rushing right home today, we're going to stay for our picnic!" Which was really quite funny, considering we didn't have any food.

More whining ensued. I wondered if we should just haul it out of there. To make matters worse, I looked around and noticed something. Here I was observing the autism class, and all of the other kids were playing. Numbers of them were over at the water tables, splashing. Several were on bikes. Some were getting pushed on the swings or chasing bubbles a teacher was blowing. A few were aimless, yes, or making strange noises, but overall the whole group was relatively happy and just going with the flow.

Except for Ethan, who was now running along the side of the school to comment on the PA speaker attached to the wall. In that moment, I was so tired of the PA speaker. We have to talk about the speaker every day. I was tired of the fact that I had tried to suggest he do something besides swings and he had dissolved into a woodchip-kicking tantrum. I was frustrated that once again, the parents I so wanted to get to know were all here, and I was dealing with his antics.

Things got worse. I opened his progress report, which was stuffed in his backpack with a lot of other end of the school year papers. The themes were the same. Physical therapy, lots of progress. Speech, pretty good progress. Occupational therapy, some progress. Social So far to go, even with goals that to me seemed so basic. Playing differently with objects. Initiating play with another child.

I swallowed hard and tried to keep my eyes on all the gains he had made, in other areas. We headed inside to the classroom where other parents were and where a teacher graciously found some milk and crackers for the kids. They wolfed it down and headed to the play area. Or I should say, Anna headed to the rice table with numbers of other autistic children and their siblings, while Ethan went off to the side with a ball toy and kept playing over and over, along with another boy who was actually brand new, having turned 3 just the day before.

"I like to see how all the kids are following through with play schemes we've worked on," announced his teacher to those who were standing nearby. She motioned at Ethan with a wry smile, "Except for this one."

I felt a weird kind of frustration seething up in me. These people don't know what he's capable of, I stood fuming. They don't see the way he seeks out play with his sister. They didn't witness the moment he asked the boy at the park to go on the slide or asked the other kid at the McDonalds area to play with him. That one I mentioned a few minutes later, to his teacher.

"Really?" she asked, looking amazed, as if that was such a novel concept. He's going to be one of those kids who just isn't into play, I remembered her saying at a meeting. To me it felt like a concession that I wasn't ready to make, at least not completely. I love his teachers and I know they believe in Ethan, as least to some extent. Just the other day one of them talked about the fact that he WOULD be a mainstreamed kindergartener, that he has that potential. But sometimes being with them feels like an exaggerated version of my visits to Anna's preschool teachers back in the day, before she really "clicked" in school. I felt as if they were seeing her through a pair of blurred lenses; that they weren't getting the whole picture.

The other thing gnawing away at me was the fact that these kids were supposedly autism kids, and at face value, were doing just fine. Didn't anyone else have Ethan's issues? I wanted to ask. Were most of these kids just kids who would have been classified as "quirky" 30 years ago?

Later, at home, everything kept broiling in my brain. Worst of all was that sinking feeling that once again, I had been derailed by comparing my son to other kids. Who cared if his teachers didn't see everything I saw? He needed his mom to most of all just believe in him and love him regardless.

How long are you going to have to keep teaching me this lesson? I asked God, and the verse that jumped into my mind was His answer when the disciples asked how many times they had to forgive. Seventy times seven. Again and again and again and again.

Later my mom stopped by and I watched the free and easy way they related to each other. I thought of the way I stared resentfully at kids who barely seemed to be on the spectrum and wondered about my mom's struggles as I whined about Ethan's problems. Every time she looks at him, I think she sees so much of who he is rather than what he isn't accomplishing at the moment.

How many times will I have to learn not to look around but above?

Today Ethan and Anna played together for an hour. I relished in the sounds of them giggling together. Come here, Dianne and Rita, I mentally whispered to his teachers. Come on over here and see THIS.

But I can't stay angry, with them or myself. In our own ways, Ethan and I ARE slow to bloom. We are slow to "get" what others want us to get. Thank God He's not giving up on either of us.


Anonymous said...

I love reading your blog and feel your frustration today. My son's speech therapist just told me today that what he does at home is not a good measure. What counts is what he does in different places out in the world. Sometimes I feel like they think we make up his progress. Hugs. I am going to start my own blog after we move into our new house, perhaps we can cheer one another on.

Deb said...

Thanks, anonymous. I'd love to check out your blog once it's up and running. Yeah, I was frustrated that day. You know how it is when you KNOW what your child is capable of, but they're not showing it to the world yet? I know you get this!

Brenda Rothman (Mama Be Good) said...

You know what struck me? Why do we expect kids to socialize at all in a group that large with that much going on? Isn't that odd? We seem to expect our kids to do so because schools are based on an outdated idea: that people will have to work together in large-group organizations and have a lot of activity going on around (think factories).

It's unreal.

It's also unreal that our children aren't given individual instruction and individual attention for their strengths.

The idea that Anonymous had put to her that it doesn't count what our kids do at home? Excuse me? That is just ridiculous.

Now I'm up on my soapbox. And just a tad pissed off.

Deb said...

Brenda, I hear you! The point you brought up is EXACTLY what my mom said when we were talking later that day. It helped open my eyes a little. And it's can what they are doing at home NOT matter? Of course it matters! It shows what's in there, when our kids are feeling "safe" and maybe not burdened by unrealistic expectations. It's SO true...