Altogether in Autismland Redux (#489)

Less than five more days until the autism and advocacy conference on this Friday, October 27th, and so Charlie and I made our way to the airport late this afternoon to pick up my parents. Amid the swirl of things to prepare—proofreading the program, AV, food to be ordered, bottles of water to be made available, speeches to write—the most important concern has little and more than much to do with what will be going on at McNally Amphitheatre on the Lincoln Center campus of Fordham University: Who is putting Charlie on the bus on Friday morning, and who is taking him off?
Targetpumpkin_2
When I noted a few months ago that the keynote address by Timothy Shriver, CEO Special Olympics would be at 9am, I thought, I’m going to have to ask my parents to put Charlie on the bus or miss a good part of the conference myself……. Part of being an autism mother means that you often just have to miss things. There shall be no surprises when it comes to Charlie Getting Off the Bus.

My parents, as they generally do, said “sure, yes!” (as they are wont to do in all things Charlie-related, such as last November 2006 when my mother moved in with us to take care of Charlie, whom we had taken out of his public school classroom). And so, after a side-trip to “Tar-gett! Sopping cart” for a box of garbage bags and a 99 cent plastic pumpkin, we neared Terminal A.

Charlie was quiet, his expression fixed, as I honked the horn to get the attention of my dad. Charlie did not say a word when my parents got into the car and squeezed on his left eye. He did request “noodohs” for dinner and off we went to one of his favorite places—only to find a “Closed” sign on the door and people carrying out boards and cooking equipment; inside, the chairs were stacked up hapharzardly. “Noodohs,” said Charlie and pushed at the door, which was (contrary to what the sign said) open. “We can’t go here tonight,” I said, and pulled on his hand. “Noodohs,” said Charlie. “We’ll find a new place some other night with Dad,” I said, Jim having gone into work at his office.

Charlie looked and looked through the window and paused on the sidewalk. I suggested a dinner alternative and, sighing, he walked away.

Small Triumph Number Next!

“Do you remember……” My dad asked, remind me of the panic-tantrum-with-back-arching in the middle of the main thoroughfare in Hoboken that Charlie went into back in April when we were told that a restaurant we were going to go to was closing early on Easter, due to lack of staff. Not an eyelash was batted tonight in the face of the unexpected.

It is in seeing Charlie handle the unexpected that I can trace how far he has indeed come, even more than by the number of sight words he can read or how high he can count (Charlie has been having trouble getting the numbers ending in “0” correct: 45 is “forty-five” but 30 has been “three-zero” or “thirty-zero”).

And if you had said a year ago, that we would be (as we will be at the end of this week) standing together with all of you to talk about how we can advocate to make the world the best it can be for autistic kids, autistic persons—that Charlie would be getting on the schoolbus so happily—that he would be getting on a bus while living in the basement of his in-laws’ house—-that I would have had a fast yet rich conversation, complete with sighs and laughter, with another autism mother in the check-out line after she said she reads this blog: I think I would have been more baffled than Charlie standing at the door of his now-defunct favorite restaurant, saying “I want brown noodles! Shrimps, yes, shrimps!”

I have never been one for surprise parties but of late that is how it has been feeling in Autismland. You walk into a familiar room and suddenly the lights go on and there, calling out “Surprise!”, are so many friends and relatives, smiling at your look of disbelief changing into gratitude, altogether in Autismland.

Thanks for sticking with Charlie and with us.

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Comments
3 Responses to “Altogether in Autismland Redux (#489)”
  1. Ennis says:

    Wow! Congrats!

  2. cindy says:

    It was great meeting and talking with you. I tend to look back in 6 month clips and it is truly amazing how far our kids can come!

  3. Christine says:

    Wow. Friday will be here before you know it. I wish I could join you at the conference as I know it will be a tremendous success.

    And congrats to Charlie too for handling the unexpected with such aplomb!

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