Walkin’ the Walk; Walkin’ the Bike (#498)

This is what it too often feels when you’re an Autismland parent: One moment you’re on the top of the world, the next you’re down in the dumps.
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As in, you (Autismland parent; Autismland dad in particular) put together a day-long conference on autism and advocacy. You expend every ounce plus of your energy (physical; mental; spiritual; emotional) to put together a program of speakers to best present the message you wish to communicate; to make arrangements for the conference (from raising funds to planning the lunch to writing the copy for the program); to invite people to come (mostly via emails written one by one). And when you stand before a couple hundred people and speak about how you got to where you are, how Charlie got you to where you are—through what you speak of as the “mystery of suffering” and joys and hope beyond anything imaginable—how you learned to ride bikes together with Charlie, how after too many bumpy days Charlie is liking and learning at the right kind of school: You cannot but feel you are at some peak of hope, love, advocacy.

You have been climbing one long hill to help Charlie be at a place in which he can excel; you have had to tug him along at times; you are as if at the zenith. It is a feeling I have also had on the day Charlie learned his numbers from 1- 9, Charlie said his first word, Charlie swam a few feet in the swimming pool.

And then suddenly, wump. You look the other way for a nanosecond and down falls all that progress like a house of cards. And if you have been going around making public pronouncements about your child—-of bike-riding or of academic prowess, of a friend gained–the fall can seem to shatter everything. We take joy every day and in every way in what Charlie does; we know that this Autismland life is often very hard and thick with challenges, perhaps of the kind that a parent might prefer to not write publicly about—but this would not be too much of an “autism reality show” if I left out the reality.

If you can’t walk the walk, don’t talk the talk.

Or rather, walk the walk, and walk the bike.

On Sunday, the day after the day after the conference, Jim and I were (and still are, somewhat) alternating between euphoria and exhaustion. After dropping off Kassiane at the airport on Sunday morning, Jim pulled out the bikes while Charlie ran to get his helmet. The wind was strong, the sun shone bright, and when they came to the bottom of a certain hill, Charlie (as he has been more and more doing) stopped. And would not be moved.

Cajoling did not work (does it ever?) and any push proffered by Jim meant that Charlie tiptoed a few inches, then waited for another Dad-push. Charlie’s body went stiff and other signs of Being Upset (good old crying) were ensuing, and a passerby pulled over.

Ever since, Jim has been relaying the scene over and over and—after worrying that here was the end of bike-riding (there are so many hills where we live that you cannot go too far before enountering one), and that his remarks at the conference had been rendered less than accurates—realized yesterday what to do: Teach Charlie to walk his bike up the hills.

This might seem so obvious that you’d think two parents with a bunch of letters behind their names would have long since figured it out. But getting on and off the bike are transitions for Charlie and, as such, are fraught with the potential for error: A pants leg caught in the bike chain; a need to relaunch Charlie to ride. Jim being home today to see Charlie on and off the bus, and to take Grandma to the eye doctor, he was determined to try.
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I was sitting in my office with quizzes to grade, a paper to finish, and students to advise when the phone rang.

“We’re walking our bikes up the hill!”

It had been a simple process to teach: Jim and Charlie got to the hill, Charlie stopped, Jim said “walk the bike,” Jim showed Charlie how to hold the handlebars and they walked up the hill: Nothing to it.

I guess you could say, when you’ve faced a lot of uphill travel on the road in Autismland, you get used to thinking that learning anything new may warrant a struggle. And I know that, while there are cliffs and sheer sides of mountains—fjords—that the three of us will have to scale somedays, maybe we are learning take the right equipment, to have learned the proper techniques.

Jim needed to return some library books so off he and Charlie went. “Liberwie,” said Charlie who knew just where he was and smiled his way in. “Why don’t you get a book?” Jim said and Charlie—who was happy to be there, if blasé about the books—took one off the shelf (Grandpa Goes to the Hospital). I came home (with all the students having been seen, and no quizzes graded and the paper not yet finished) to find Charlie already dressed in his costume as a Captain, with white skipper’s hat and a brass-buttoned blue blazer (the costume was inspired by Charlie’s experience sailing back in September). He was leery about walking about up to strange front doors but did get to the foot of a few houses’ porches, said a very soft “tick or tweat,” and got sticky fingers on his jacket from a sucker.

It was a warm night and we three crunched through leaves, Charlie running now to the side on someone’s lawn or up ahead, pumpkin swaying in his hand.

The road was flat and mostly straight, and we talked as we walked all the way home.

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Comments
5 Responses to “Walkin’ the Walk; Walkin’ the Bike (#498)”
  1. Lisa says:

    Kristina,
    This is a wonderful story, a wonderful outcome, and a wonderful metaphor. So deceptively simple–if you can’t ride the bike up the hill, walk it.

    🙂

    I’ll remember that.

    best,
    lisa

  2. Anonymous says:

    Kristina

    I was at your wonderful conference last Friday. It was worth all of the effort that you and Jim put into it. (I’m the Sara part of the Kim and Sara that Shawn blogged about on the train back to CT).

    I remember an early Halloween with my now 12 year old son. We had just taught him how to properly greet people when he met them. The whole Halloween concept of ringing a doorbell but then NOT entering the house, was so confusing to him . . . Add to that, neither he nor I like chocolate and the whole evening was pretty disastrous. Fast forward to last night were he and a bunch of his friends (including his girl friend) traipsed around the neighborhood (followed at a discreet distance by some of the Dads), wearing full costumes (he was an Elvis like figure), getting tons of candy and then arranging a very sophisticated exchange system to trade certain types of candy for others. It is moments like that one that show how far you truly have traveled, even if it is one step at a time, and involves walking the bike up the hill.

  3. Anonymous says:

    My mikey so desperately wants to go in their houses, that I feel helpless that he will ever stop.

  4. The more I think about Halloween, the more I can see how nonsensical it can seem: The whole business of walking up to other people’s front doors and not actually entering and getting candy…….. Charlie did try to walk into one of the houses but turned around. Did Mikey actually get into one?

    Thanks, Lisa, I am trying to remind myself more often to stop and walk!

  5. mom-nos says:

    And that’s what it’s all about, isn’t it? In the face of those insumountable-looking obstacles, we just have to think differently. Thanks for sharing the story.

    Bud was confusing by the ring-but-don’t-enter phenomenon as well. Luckily, we did a trial run with Nana and Papa, so we got to work the kinks out in dress rehearsal.

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