Tuesday, July 07, 2015

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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10 comments:

  1. Oh, I can so relate! Our dear boy takes his radios everywhere and is obsessed with what radio stations can be received where. He knows all the different frequencies of every single radio station.

    It's lovely when they're happy and occupied, but hard work when you're having yet another three hour circular conversation. Prince makes a babyish whingey sound when I begin to sound frustrated with this. He's 15 and says he wants to be treated more like a 'normal' boy and doesn't want to be around us (mum and dad) any more (because we're sooooo cramping his style, you know?) but then spends hours on end demanding attention, often at the expense of everyone else in the family.
    So I pray. And then I pray some more. Maybe that's a good lesson in and of itself lol. Can't take anything for granted with a special needs child in the house ;-)

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    1. Thanks for commenting, Sandy: it's always nice to hear from people who "get it." You're right about the prayer thing too. Just depending on God, day to day.

      I laughed at your "cramping his style" remark. I mentioned to my daughter recently that Jonathan often says "NOOOO" when I start to sing (or even hum). She said, "It's probably because he's becoming a teenager." :-)

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  2. Way to go, Jonathan! (For having some "successful" social outings. And Jeanne, I'm so glad you're feeling like you can keep doing life with Jonathan for the time being. My hat's off to you. I admire you so much. I enjoyed reading about your doings as a family.

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    1. Thanks, Betsy. I'm glad you enjoy reading about what we're up to -- it's not all that exciting by most standards, but we celebrate the victories, for sure.

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  3. Jeannie, I laughed at the scene with Jonathan and his Grandmother. What a hoot!

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    1. Yeah, it was so funny. Even funnier that he laughed so uproariously after doing it each time. That never gets old.

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  4. Thanks so much for that "bite of life". Even though we know Jonathan ... I learned more about him and you as parents. While reading I could just visualize it so clearly. Continued blessings, patience and a good sense of humour!

    From NO NO Linda :)

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    1. Hi Linda - thanks for reading and commenting, and for your prayers and blessings. When are you coming this way again?

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  5. The story of Jonathan and the armpit noises/burps made me laugh; my daughters, ages 7 and 12, are fascinated by bodily function noises. I guess it's not just a boy thing!

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    1. No, I guess it's just a kid thing. :-) Thanks for coming by, Laura.

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