Life (with Jonathan)

School ended on June 25, and Extend-a-Family day camp started today.  After ten days at home, Jonathan was  happy to head off to camp, and we were happy to see him go.  Still, those ten days in the interim actually went very well, for the most part. 

We pushed his boundaries a little more than usual by taking him on several social outings. Last weekend we were invited to a BBQ at the home of a couple from church where we'd never visited before. We brought along a few of Jonathan's favourite jigsaw puzzles, and he spent much of his time sitting at a table on the deck, working on his puzzles. He enjoyed himself, and so did we.

Then on Canada Day we went to a 25th-anniversary BBQ for our friends Gary and Corina. There were lots of people there (most of them strangers), and Jonathan was nervous at first. But then he spied a basketball net at the end of their cul-de-sac, and we all breathed a sigh of relief. Because of the safe place to play and the nice collection of balls and people to play with, we didn't need to take out the puzzles and books we'd brought along. Jonathan did take a short break to eat some supper (after all, there were chips, potato salad, and raw onions on the table:  these are some of his favourite foods, and hey, a kid's gotta get his veggies!), but otherwise he spent the entire three and a half hours on the court, throwing balls, interacting with other kids and adults, and looking over at us now and then with a big smile on his face.

When successful outings like this happen, we realize that some of the problems we had with Jonathan in the past are vastly better than they used to be. He can still get anxious when we go into a brand-new situation, but he seems to adapt faster and can understand better when things are explained to him. He's less fixated on doing specific preferred things: he still loves going to Rideau School or Centennial School to play with the "yellow-blue-red"(see photo), but he's a bit more flexible if that doesn't happen to work out on a given day. Instead, he's usually fine with just playing basketball in the driveway, going for a walk, or even coming along with Richard or me to do an errand.

 These improvements are encouraging to see, because lately it's really hitting home that for me, "life" really means "life with Jonathan."  I see boys much younger than him biking down the street on their own. I see three of his girl classmates (and he sees them too, judging from the way he smiles and blinks in that flirty way of his) walking along the sidewalk. But he can't do those things. He can't go to the park or the library or just for a walk by himself. He can't play basketball unsupervised in the driveway because if the ball rolls out onto the street he will follow it without looking for traffic. He can't stay home alone if I need to run a quick errand (and at least at this point, it's too much responsibility for Allison to look after him on her own). So when Jonathan's not at school or camp, "life" pretty much consistently involves being with him, and for the foreseeable future that's not going to change. That might seem like an overwhelming prospect if all our challenges with him were steadily getting worse, but that that's not the case.

I can't deny that some things are still hard. Even at nearly 13, he still hasn't mastered toileting yet. He has his ongoing obsessions: for the past year he's been fixated on closing cupboards and doors, and he even slammed the downstairs bathroom door so hard that the cover over the light fixture fell off and broke in half. He gets stuck in what his EA calls a "feedback loop" and asks the same question a hundred times an hour, expecting the "right" answer to be delivered with equal enthusiasm each time or he'll whine, growl, or yell.  It's exhausting.  And did I mention he makes so many annoying noises?

But he is still fun to have around. Last night when Grandma was over for a visit, Jonathan decided to prove he is a normal 12-year-old boy by burping loudly and blowing what we call "arm farts" on the back of his arm, and then laughing hysterically.  (See "annoying noises" above -- but it was funny.)

At church yesterday he spied Jeffrey coming in to the sanctuary. Jeffrey is a young man with special needs who is a bit difficult to deal with -- but when Jonathan saw him, his face lit up and he said "Backpack" (because Jeffrey was wearing one).  He kept staring at him and saying "Hi! Hi!", waving to try to get Jeffrey's attention. Instead of seeing a person who might be uncomfortable to be around, Jonathan saw someone he felt connected with.

Richard took Jonathan with him yesterday to pick up our takeout food for supper, and Jonathan got so excited when he heard Taylor Swift's "Shake it Off" on the radio at the takeout place. Rich said he was glad there was no one else in the restaurant ... but to be honest, I was a bit sorry I hadn't been there to see it.

These things that make me feel hopeful.  They make me think, Life (with Jonathan) is OK.   It's not easy, but I think I can do this a while longer.

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I'm linking this post to the  

"Different Dream Parenting" linkup 

today (hosted by Jolene Philo).