It’s a Beautiful Life (or, Who Woulda Thunk?)

When I started blogging in this space, I wrote that finding out that your child has autism is like the end of a love affair, and the start of a new, beautiful relationship. Being now a couple more years into that relationship, I still think the same. Indeed, I think it even more.

Charlie & Jim prepare to go kayaking

If you had told me that Jim and I would one day be loading a two-man kayak onto the roof of our stationwagon and driving down the Garden State Parkway to the beach where we vacation in August, I would have done the equivalent of pshawing you. 

For one thing, being so wrapped up in Charlie's educational and school needs, I would have said that kayaking seemed a bit of an extraneous concern, a luxury, to contemplate. We should (I thought then) be devoting our every waking moment to teaching Charlie to read, to bringing him to play and social skills groups, to developing his communication and speech skills. Kayaking could wait. Further, as the beach is Charlie's most favorite place, a day's visit used to stoke extreme anxiety in him, often exhibited in the car on the way home. In previous years, Jim and I decided that day trips just weren't worth it.

My view from the back of the black car

But yesterday, Sunday, there we were driving down the Parkway with our just-last-week-purchased used kayak bungee corded to the roof of the car. Charlie was so eager to go that he had woken up at 6.30a.; I awoke to find containers of leftovers nicely arrayed on the kitchen counter (while everything was open, most were untouched: Charlie has become a much more picky eater since he stopped taking Risperdal in June). He waited very patiently for Jim and me to get ourselves going. We got bagels, Jim dragged out the kayak and he and I (mostly Jim, that is) turned it over and lifted it onto the roof of the car. The drive to the beach was fast and peaceful, with Charlie occasionally singing along to whatever was playing on his iPod, and the sky gorgeously blue and bright. By a quarter to 1pm, Jim and Charlie were out on the water and I was happily set up in the back of the black car.

Weekend ocean trips to kayak and swim, with Charlie trying to go out as far as two wet-suited surfers and, when we called him gently, turning around with a certain grin on his face; sushi at the little restaurant whose owner/chef called out "two California rolls!" even before we walked in the door (Charlie endeared himself to the family who runs the restaurant when, back in August, he stood quietly at the counter waiting for those two California rolls for almost an hour as the chef had a huge party order to fill and numerous customers filed in and out and made it clear, they weren't the sort of people who had to wait for sushi); a long and peaceful trip home due to traffic on the Parkway and despite the battery on Charlie's iPod conking out: Who woulda thunk?

And all with a boy whose "behavior problems" far exceed those of any child at his middle school, including the nervous adolescents waiting in the school's main office outside the Assistant Principal's door?

Charlie in his natural element

Sort of like this headline about a study cited in the September 20th Daily Mail: How mum and dad's [difficult and confrontational] behaviour can get their children branded troublemakers at school.

Yes, who would have thought, thunk, that?

It's not only a beautiful relationship that Jim and I have with Charlie. It's been a beautiful journey with our lovely boy. However rocky the road, however much mud gets on our shoes and dust in our eyes, we just keep on walking, together with Charlie.

(Or maybe I should say, swimming alongside our Kingfish boy.)

10 Responses to “It’s a Beautiful Life (or, Who Woulda Thunk?)”
  1. M says:

    and it’s a beautiful journey to be reading about. i’m appreciative of all the effort you put into sharing these stories. the charlie we see: peaceful-easy, enjoying hobbies, loving the beach…so different from the charlie the school system sees. i wish they could appreciate the interesting, wonderful young man he’s becoming.

  2. shannon says:

    Been catching up with your last week’s worth of posts, the conflicts of interest among his teaching staff at the meeting, their level of expertise contrasted with lack of successful behavior management, and – another contrast – the blessed serenity and joy Charlie experiences with you & Jim. Just so glad that Charlie has the safe and comfortable home/parent zones to depend on.
    Apologies if you have tried this already and I missed it, but since you understand Charlie and his behaviors so well, is there any chance you could do a class observation out of Charlie’s view, so you could help them analyze what is going on, and what Charlie is trying to communicate with his behavior, and how they might deal with it?

  3. I did not realize Charlie stopped Risperdal completely in June. Yep that explains the less appetite. How is he at falling asleep without the med? Is there a new one that has drowsiness? Geodon is what Matt takes.

  4. Club 166 says:

    It’s amazing that most destinations can be reached, if only you are willing to take a different route.
    It’s also amazing that many put much more emphasis on proceeding on *this* narrow road, NO MATTER WHAT, rather than taking the road less traveled and eventually getting there.

  5. Emma says:

    Interesting news article!! I think parents of children with disabilities probably get this bias even more – the habit is to assume we are grieving, unrealistic, in need of therapy or whatever – therefore we must be adding to our childs “behaviours”.
    Sometimes the experts seem to suffering from a bout of inflexibility and dislike of change.
    “2 california rolls!” ha! Thats sweet.

  6. autismvox says:

    The experts “suffering” from something, now fancy that!
    Charlie’s become quite a regular at the sushi place.

  7. Jasmine says:

    Simply beautiful!!!

  8. Jasmine says:

    Simply beautiful!!!

  9. kim says:

    Thank you again, Kristina.
    I have been starting to resist the “narrow path” lately as well because my boy is so blissfully happy when he is allowed to be himself.

  10. Synesthesia says:

    That just makes my eyes slightly moist!
    I wish more people had that sort of attitude about autism. Reading posts like this make me feel warm and make me smile.

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