Slouching Toward the Holidays

A neighbor's Christmas lights seen from a distance  It's December 17th which means—-we're going to California next week and Christmas is Friday and that means New Year's is in some two weeks.

Where did this year (the year Charlie grew 7 inches; the year of Jim's book) go?

Aside from this post, it's been occurring to me that my December entries have been a little short on holiday spirit, fa-la-la-la and "how to help your autistic child cope with the holidays" sort of things. I have finished all of our Christmas shopping (with the exception of that exercise bike/trainer/machine/contraption—Jim and I really thank everyone for their suggestions and are thinking it over, looking around). We used to do a holiday newsletter and, before that, photo cards starring Our Beloved Boy. Since I've been blogging (starting in June of 2005), we haven't been as inclined to send out missives detailing our year (many of my relatives read this blog). And, seeing as I post so many photos of Charlie here, how could I choose one or even a few photos of Charlie to highlight……

For this year, I'll confess to feeling complete end-of-year fatigue, tinged with weary relief. 2009 turned out to be super difficult and, at many moments, unbelievably agonizing for Jim, Charlie and me. Once Charlie's former teacher brought up the possibility of a "temporary residential placement" for him at the Bancroft Neurohealth's Lindens Neurobehavioral Stabilization Program, the notion that Charlie wouldn't be with us, because he couldn't be with us, has gripped Jim and me. We'd heard some pretty terrible things about Bancroft and just having anyone—let alone Charlie's (then) teacher—strongly suggesting that that was where he had to be, was traumatic. 

We didn't want to believe it. We were determined not to believe it. 

Charlie had some really tough, tough days. Moments. Periods of weeks, months. Things got better in the summer at home. Things got worse when he went back to school in the fall. There was all sorts of struggle, with the result that we decided that Charlie needed to be outplaced in a school specifically for autistic children. He has been, it seems, doing well, though we still feel a bit of the twinge that (for us at any rate) comes with knowing that he's in a separate school for "students with behavior problems" (yes he does have them, but it's not because he's a "bad kid," but because of severe struggles to communicate and his cognitive challenges).

Then I look back and recall the two times Charlie was in "separate" settings. One t
ime was in December of  2005-June of 2006, when he was in a small private autism school (only 7 students); he loved it there. The other time was when he was very little, just over 2 years old, and he had a home ABA program, staffed by college students and a graduate student.

Charlie's remembered their names over the years. He's been talking about them even more than he usually does lately: "Arielah Minnesota. Stella, Stella! Tara Portia."

(Portia's the only one who's not a therapist. She's my sister-in-law's dog, whom Charlie became very scared of.)

And I've been thinking that I wanted to do a little shout-out of yesterday's post to Charlie's first ABA "team," as they're the ones who helped to give him that good foundation that has been one reason, through some very tough times, that Charlie has persevered. They taught him to learn how to learn and that—that gift—has stayed with Charlie.

I used to send them our holiday newsletter when we did it. I've stayed in touch with a few of them, mostly through email, and now Twitter and Facebook. Jim and I have wanted to make sure they know that, even though Charlie's had some very big struggles, all their patient time at the little blue table with Charlie was more than worth it.

So here I have been slouching toward something like some holiday musings regarding giving so much when you don't realize you are. About how the gift you started giving (in the case of Arielah, Stella, Tara, Beth, Andrea, Lindsay, Kristy) back in 1999 can still be bearing fruit ten years later.

Or make that, 11 years later, into 2010, the soon-to-be-here New Year.

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Comments
6 Responses to “Slouching Toward the Holidays”
  1. emma says:

    Off topic sorry, but I’m wondering if you’ve read this:
    http://cecblog.typepad.com/policy/2009/12/special-educators-applaud-proposed-legislation-on-restraint-seclusioncec-and-ccbd-recommendations-ar.html
    It’s about time I learned how to make an active link šŸ™‚
    You’ve certainly all had a busy year, and things seem to have come such a long way from the first suggestions of residential placement. I think the three of you have a lot to be proud of, many wouldn’t have survived so well under so much pressure.

  2. autismvox says:

    thank you, yes, printed out copies to hand out at the IEP meeting and cited the legislation in my “statement of parental concerns”! I hadn’t seen that blog, thank you. Things are slightly different now that Charlie is not in a public school but a center specifically for autistic children/ children with disabilities. We made some specific recommendations about restraints as a last resort only and as NOT being part of Charlie’s behavior plan.
    can’t believe how fast this year has passed–Jim’s book has been a real highlight in the midst of it all (and also my getting to go to Greece…..). really, I never thought things could get as hard as they did, or that I could go in the face of them…..what doesn’t kill us, makes stronger, right?

  3. Hala says:

    We’ve had our own difficult year, and it’s been really fun to read about how you guys and Charlie are all doing. Things seem to be on the upswing, and I’m really glad.

  4. Niksmom says:

    I get the sense that so many of us parents will look back at 2009 as a difficult year. Or, perhaps it depends on the age of our child? The transisions faced? Who knows.
    What I can say with certainty is that Charlie is right there with you & Jim and that doesn’t look to be changing any time soon. Which is as it should be. Family. Home.
    Wishing you and yours a joyful holiday season together.

  5. Niksmom says:

    I get the sense that so many of us parents will look back at 2009 as a difficult year. Or, perhaps it depends on the age of our child? The transisions faced? Who knows.
    What I can say with certainty is that Charlie is right there with you & Jim and that doesn’t look to be changing any time soon. Which is as it should be. Family. Home.
    Wishing you and yours a joyful holiday season together.

  6. autismvox says:

    thanks, friends—what was it about this year…..

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