Rainy Sunday Together

Back on Their Bikes

Not much to report from Sunday except that—despite the previous day's
bike accident, despite more school district shenanigans than you can shake a stick at (not only did we get a stack of Incident Reports over a week after the fact but I came across the words "four-man protective hold"*[see comment]–yes I have some emails to write and phone calls to make), despite rain almost all day so there was a lot of hanging around the house with Charlie who'd woken up at 6.30am and put on his swimsuit thinking of kayaking—despite all this, Sunday was a peaceful-easy feeling kind of day.

Early morning bagel run. Working on Charlie's typing to watch YouTube videos. "Swim-gym" at the YMCA (Jim goes to workout in the fitness room while Charlie and I swim, only it seems Charlie is outgrowing the pool and is not too interested in being there). Visit to Jim's mom ("Grandma, see Grandma," Charlie reminded us) in the nursing home. Early Vietnamese meal (the waiter/chef is getting to know us and quickly brought out some summer rolls for Charlie who was quite ready for wait as long as he had to).  Back home with the clouds parting to reveal blue sky and Charlie donning his bike helmet and going to get out his and Jim's bikes. Charlie hopping straight into the car and wanting to go out "to eat" and looking very consternated when I pointed out that he'd had a generous meal in the quite recent past. Charlie. I followed this up by noting that I was going in to make some rice and that there were also frozen fries in the freezer.

Charlie sat in the car for a good half-hour before coming out and announcing to Jim and me that he wanted "bedtime." He went off to bed and then got up for a shower. And then to sleep, after asking me to spread out his old (no longer soft) blue fleece blanket on his bed. 

Charlie is 12 years old, and 5 feet, 7 inches. He is the youngest in his class, and the tallest, and, as he's been with the same group of boys for the past three years, he's been in the awkward state of being simultaneously younger and bigger than his classmates for some time. Last fall when he started middle school (in 2008), there was a lot of emphasis on how he and the other students would no longer be "coddled" and how middle school was all preparation for high school, vocational training, and the real world. Of course we know that this is all necessary, that Charlie won't be a child forever. 

But as I reflect on his very difficult past year in school (and I've had too much reason to reflect), I have to wonder, if too much was expected of him too fast last year; if the expectation that he could keep up with classmates who are, in some cases, two years older than him, was part of his undoing.  Of course Charlie is growing up and needs to learn to be more independent and not be "babied." 

But how often have you heard the expression "if you've met one autistic child or individual, you've met one autistic child or individual"? I'm just suspecting, that principle wasn't, hasn't been applied to Charlie in school last year and so far in this one. And no wonder, when Charlie has not seemed able to fit in with the mold, with the protocol. the results have been far from peaceful and not easy for anyone. 

11 Responses to “Rainy Sunday Together”
  1. Autismville says:

    There’s a reason it’s called the INDIVIDUALS (pardon the caps) with Disabilities Act. Federal law recognizes that Charlies should be looked at as an individual. Your school district should as well.

  2. Sorry you’re having such trouble with Charlie’s school.

  3. Kate says:

    My guy came into this world at 9lbs and just kept growing. At two he was as tall as a three year old, at six he was as tall as an eight year old. We had lots of experience with strange looks, accusations of babying, etc. Even his teachers, who knew he was only six,seven, eight (etc.) seemed to expect more of him because of his height. It was a prime example of cognitive dissonance.
    I really wish you guys lots of peacefuleasy feelings. I know middle school is the toughest time. From my experiences with my guy, I can tell you he was emotionally and developmentally around two years behind his peers (he has caught up) so transitioning and expecting more adult-like behavior seems to be the exact opposite of what developmentally delayed students need.

  4. autismvox says:

    People have said that Charlie looks like he’s 17…….developmentally, I think he is at least two years younger than his biological age. He was 8 lb 3 oz and 21 1/2 in at birth.
    Yes, the school district seems to be in a “one size must fit all,” Procrustean, frame of mind.
    It’s been tough with the district but Charlie’s remained happy and bright-eyed at home (with inevitable “moments”). Really, it is the worst of times and the best!

  5. Emily says:

    TH, who is 8 and four months, is about the size of the average 10.5 year old. But developmentally, he’s always been just about two years younger in terms of emotion, behavior, etc. He also runs into certain high expectations because of it that he simply cannot meet.
    But Charlie’s *only* 12, and if he’s developmentally about 10, either way, he’s still a boy. Just a boy. If anyone remembers being that age, they remember how weird it was to be looking more adult while still feeling so much like a child. So confusing. I personally don’t see anything wrong with continuing to nurture the child within his or her comfort zone. Once that childhood window really does close, you can’t go back again. Why the rush to slam it shut? That school and their attitudes about middle school alone are annoying. And, FOUR-MAN HOLD? WTF?

  6. Hai Dang says:

    I too loves Vietnamese summer rolls. My wife makes them for me every week. I could not get my children to eat them. Charlie has great taste when it comes to Vietnamese foods. I am sorry to hear that you have more issues with the school. What are they trying to do to Charlie (Four Man Hold)? I am happy Charlie is coming home to a safe and fun place after rough days in school.

  7. Nicole says:

    Sometimes I wonder if autism only classrooms (as opposed to mixed disability classrooms) can cause teachers to use a “one size fits all” approach. If you have a class where one child is autistic, another intellectually disabled, another with cerebral palsy, etc the teacher will have to differentiate instruction for each student. In autism only classroom they may assume they have less of a need to differentiate.

  8. Nicole says:

    Oh, and I’ve witnessed a 5 man hold on a, maybe, 80 lb girl. One person on each limb and another person hold her head. They (the adults) were laughing and joking with each other. It was, um, rather bizarre (but not as bizarre as prone restraints… it’s how police do it so it must be safe, right?)

  9. autismvox says:

    *The precise wording on the Incident Report is actually “four person floor control.”
    ah, yes, the police must know what they’re doing……
    Last year Charlie’s teacher told me they had him in a three person “protective hold” and she said words to the effect of ‘we could take a class photo’—she acknowledged it was very dark humor. Needless to say, at that point, I should have known it was already all over.

  10. Arthur Golden says:

    I have been pre-occupied the past couple of weeks, so I am just catching up with your recent blog entries. When our own son Ben became completely unmanageable at age 13-1/2 (summer of 1985)after 5 years in his ABA-type public school program, it led to wonderful alternatives for the next 24 years until now. I pray that this will be the beginning of a wonderful change for Charlie.
    I don’t think a yeshiva-type program in Israel is for Charlie, but have you considered the Boston Higashi School?
    I am concerned that the problem may be generally ABA, so is the large autism center an ABA program?
    Recently you mentioned behavior is communication and the failure of the recent speech evaluation (by a BCBA-certified speech therapist) to consider AAC. I will end by mentioning Facilitated Communication again, which you could try at home.
    Good luck!
    Arthur Golden

  11. Monica says:

    Vocational training??? What educator in their right mind thinks of 5th-6th grade as preparation for life?? Wow, way too much pressure for anybody. There are far-reaching goals and then there are unrealistic goals. Poor Charlie. He’s probably been more peaceful-easy at home because now he really appreciates you and Jim!

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