Sunday, January 08, 2006

 

Imitation

Another piece that I wrote in August of '05. If I remember correctly, I wrote both of these pieces on the airplane coming back from this trip.

I've been traveling this week for work. During my first day of travel I twice found myself seated next to small children. Once across from a little girl who was about 2 1/2, and once next to a little boy who was 10-12 months old. In both cases I ended up playing imitation games with them.

The little girl was smacking her lips together and making a popping noise. I started smacking my lips together as well. She was enchanted, and spent the next 10 minutes smacking her lips and then looking to see if I would copy her. When I did she'd give me a big grin and then look up at her mother, who would comment about what a silly man I was. When they were leaving the mother asked if I wanted to come along on their flight and entertain her for the next 3 hours. The little boy shook his head once while he was looking at me. I shook my head back at him, which he thought was amazingly funny. He shook his head again to see if I would continue to imitate, which I did.

That evening in my hotel room, I was thinking about those children. I had a lot of fun playing with them. It was so easy to get them to pay attention to me and interact with me, and they were eager to play imitation games. It was so unlike my own children. As a young child Jason had a limited range of interactions. Timothy still has an extremely limited range--he'll play tickling and wrestling games, but it's extremely difficult to get him to play with a toy with you, and he virtually never imitates what he sees someone else do. His preschool teachers say that he actively resists their attempts to get him to imitate.

My brother and his family visited us over the 4th of July. Will, their older son, is just about the same age as Timothy. Will and Jason had a great time playing together. Will followed Jason around and was very interested in doing what Timothy did. It was wonderful to see Jason interacting so positively with Will. But it was also hard, because if Timothy didn't have autism, them Jason and Timothy could play together that way all the time.

It is saddening to think about the simple pleasures of playing with my children that I've missed. I know that my wife feels that pain more often and more intensely than I do. That's not surprising given the larger position that the boys occupy in her daily life. Playing with those two kids in the airport gave me a closer glimpse into her own personal experience of the loss we've experience from the boy's autism.

 

Cub Scouts

I originally wrote this in August of '05. We're still going to Cub Scouts. Jason and my wife are going to "Mom and Me" camp in April.

A couple of weeks ago Jason and I went to Cub Scout camp for 4 days and 3 nights. Jason was really exciting about it. A month earlier we had gone to an overnight camp with the Pack. The overnight camp was out at Fort Flagler State park, sleeping on bunkbeds in an old Army barracks with running water and flush toilets. The four day camp was a different sort of affair--sleeping in tents and using outhouses.

The first afternoon during the after-lunch quiet time we parents started talking about our other children and I mentioned that Timothy has autism. Upon hearing that, Jason piped up "And I have Aspergers!" That led to some questions about autism and Aspergers Syndrome. I told them that while Jason is very bright, he has a lot of trouble understanding social interactions and what to do in groups.

The next day, after dinner, the Boy Scout camp staff led sessions about how to do skits at campfires. They talked about the importance of facing the audience, how to introduce your skits, and most of all, to speak loudly and with lots of ENTHUSIASM! Later that night we had a campfire. The camp staff starting asking for volunteers to do skits. Most of the other boys had been practiced skits that they wanted to do. Jason hadn't practiced any skits, but his hand shot up. I got a worried about what might happen--Jason doesn't know any cub scout skits. After each skit they'd call for volunteers and Jason would throw his hand up and wave it around. Eventually they picked him. He walked up to the stage area. He faced the audience and said loudly and clearly "This skit is the beginning of a story that has already been told." He raised his arms up into the air and sang the opening bars of the Star Wars theme. Then he said "Star Wars Episode I, the Phantom Menace," and went back to his spot by the fire and sat down.

I felt a little embarassed. I mean, how geeky was that, to get up and sing the Star Wars theme song? But after the fire when we were getting ready for bed, one of the other dads said to me "That was so cool to see Jason get up there like that! That's fantastic!" The next morning another parent commented about how proud she was of Jason when she saw him get up there. And I realized that they were right. Jason had stood up and braved the unknown.

Jason had a blast at camp, but I could tell it was very stressful for him. He stayed right by my side the whole time, and frequently would pull back for something and say quietly to me "I don't know what to do." There were a lot of uncertainties, but Jason was able to keep going and stay engaged with the program. With some prompting and support from me, he was able to participate in all the structured activities. By the end of the weekend Jason was asking "Can we come again next year?" and wondering what next year's camp activities would be.

Camp ended on Tuesday. On Wednesday I was talking with a friend about the experience, and how happy I was to see that, even though it places extra stress on him, if his mother and I make the extra effort and provide the support he needs, Jason can have the same experiences that a typical child would have, like cub scout camp. My friend pointed out to me that no matter what, Jason is going to require extra effort on our part, just to cope with the impact of his disability. So it makes a lot of sense to direct that extra effort into something that provides positive benefits for him.

That got me to thinking about how Scouts is a really good environment for Jason--the rules and expectations of behavior are explict and clear. All of the parents involved make an effort to make sure it is a good environment for the boys. Jason had been instructed on how to give and good skit and he'd gotten up in front of everybody and followed those instructions to the letter. I have a feeling that I'm going to end up with a scout leader uniform of my own. I've never really been interested in outdoor activities or many of the things that Scouts do. But it works really well for Jason. Once again, my children are taking me in a direction I never expected to go.

 

Update

I didn't realise how long it has been since I'd posted anything.

Jason has now been on Abilify for a year. It's made a big difference in his behavior. We got the "home run" that the psychiatrist was hoping for. The Zoloft didn't work for Timothy. It just made him more hyper. We took him off it after about 4 weeks. We considered trying another one, but decided not to for the time being.

More to follow--I have a couple of things that I wrote during the year but have never posted.

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