Stomping and the Vast Unfairness of the Universe

10981681_10152905905453106_8663690419172642380_n Parenting has been a full-time job these past few weeks. I’ve been working on getting the summer planned out. Jonah needs a job for six weeks. The rest of the time, he’ll be training for the cross-country team and taking an SAT prep class. His schedule is pretty easy. He has to figure out the job stuff, and I’m doing the class research.

Ian is always more tricky. He needs a summer program that keeps him from losing social and language skills over the ten weeks. The district will pay for it (I think), but I had to do the research to find the program, go on tours, have him interviewed, fill out paperwork, and negotiate with the district. It’s a pain in the ass. I would be perfectly happy if he could go to a town recreation program like other kids, but he can’t. Schools don’t think that summers should be their job, so they drag their feet.

It’s very easy to get bitter during these periods of time. Why do I have to do this stuff, when other parents don’t? All that time is taking me away from my work. This year, I’m trying very hard to not go to that bitter place. Ranting does no good, and angry thoughts give me wrinkles.

One of the ways that I keep from getting bitter is by focusing on my kid. My kid is awesome. He’s making marvelous progress. I have him in all sorts of after-school activities that work on his strengths — technology and music. Today, he’s doing a Minecraft hour at the town library. He has drum and keyboard lessons. He’s going to a robotics camp for one week this summer.

He loves music performances. So, we went to see Blue Man Group last month. This weekend, we saw Stomp. He’ll be in the 6th grade band concert on Thursday.

During these shows, he’s so full of joy and wonder that I find myself staring at him during the show and not the stage. He’s radiant.

I used to write a lot about autism, using Ian as a case study, but I stopped. He just doesn’t seem like other kids on the spectrum. I’ve never met another kid with his level of disparity between his verbal and spacial IQ. He’s unique. He keeps getting better, too, which makes all this work worth while.

In addition to focusing on my kid, instead of the vast unfairness of the universe, I’ve also been trying to give back.

I’m on a committee with other parents, who create after school trips and activities for kids with high functioning autism. One month, the kids will have a swim party. Another month, they’ll see a movie. I’m arranging for Ian’s drum teacher to give a demonstration for the kids. Another parent is in charge of bringing in high school students to act as mentors for the kids during the activities.

While Ian probably doesn’t need these activities anymore, he still enjoys them. I like being around other parents, with similar perspectives on life. They’ve got their priorities in order. And we’re giving back. We’re creating something where there is nothing.

In the back of my mind, I know that the Vast Unfairness still exists. Ian’s doppelgänger in a more needy community isn’t getting what he needs. Ian’s doppelgänger haunts me sometimes. My annoyances are nothing compared to others. I think once I get things set up for my kid and my community, I’m going to have to deal with that big problem.