Let Go and Let Be: No More Helmet

Charlie in the ocean, Jim and me watching him from the shoreI got so wrapped up in talking with a friend at work about the beach and lifeguarding and the habits of sons that it was almost a quarter after 2pm when I got to my car. Out the window went my plan of stopping at the grocery store and into rush mode I went.

I really didn't have to. Charlie's school day ends at 2.45pm but if we're a few minutes late no one seems to bat an eyelash (I've seen buses still pulling in as Charlie and I leave). Tuesday, I backed in between a van outfitted with a wheelchair lift and a little yellow schoolbus and waited. Charlie came out with his teacher and stole a glance into the back of the white car in case I had bought any interesting groceries; as I hadn't, he threw his bookbag back and seat-belted himself in. His teacher looking through the passenger window. It's usually an aide who walks Charlie out and I rolled down the window. Charlie's teacher told me that Tuesday was the last day he would be wearing the helmet as a routine thing.  

When Charlie started at the Big Autism Center back in November, he was wearing the helmet all day long at school. He'd been wearing it since February of 2009: It was our then-school district's behavioral consultant's recommendation to 'manage' self-injurious behavior and other 'challenging behaviors.' The helmet was a light blue plastic shell with a full face mask and, according to the behaviorist, the mask and then the helmet itself would be 'faded out' as said 'challenging behaviors' decreased as a result of various behavioral strategies and teaching.

That never happened. Charlie had more and more 'incidents' at school and at home, where he was also wearing the helmet ('consistency' being something that is spoken of much in ABA sorts of protocols). By June, Jim and I had had enough—I'm sure Charlie had had enough back in February—and we left the helmet where it belonged, at the public middle school. Jim and I then spent the rest of the summer of 2009 spending every waking, and probably non-waking, moment in what we came to call 'Camp Charlie'–full days of walking and biking and riding and just being with Charlie, ever attentive to what was going on with his head. June of 2009 was really rough, no doubt because of the serious mess Charlie's school situation had become. Also, Charlie's neurologist had decided to take him off Risperdal and start him on some other medications—and taking Charlie off a med has always been an experience that's not for the faint of heart. (I read what people say about having migraines or feeling dizzy when ceasing to take an SSRI and can only wonder, what must Charlie be feeling that he can't tell us about in words?)

Jim and I also came to the conclusion that Charlie was better off in the wider, open-er spaces of outside than inside and started him on a regular regimen of lots of physical activity. Looking back, I suspect this helped to decrease Charlie's 'challenging behaviors' at home significantly. As you know, as of the past few months, Charlie has himself been calling for lots of physical exercise—walks, bike rides, ocean swims—and his stormy 'difficult moments' have been decreasing. As you also know, as of the past several months–since November—Charlie has been in a school that is specifically for autistic students. Up until this point, Charlie had (except for 6 months at a private autism school that closed) always been in an autism/special ed classroom located in a public school in whatever town we were living in. 

Indeed, we moved to a different town just so he could attend their (highly reputed, and not only in New Jersey) in-district autism program. Charlie did well for the first two years in an elementary school but middle school ended up being a disaster. After years of demanding that he be educated in as inclusive a setting as possible among 'typical' students, it became very clear that Charlie needed to go to school elsewhere. That, public schools haven't, and may not be able, to figure out how to teach every single student on the autism spectrum or, at least, those who have the 'behavioral challenges' that Charlie has. Maybe the school district says that it can, that it's bringing in experts and has all kinds of professional development and training. Our experience—colored further by five years of blogging about autism, special education, disability, and science and research—suggests that (let's be blunt) school districts make their recommendations based on their budgets: It's 'more economical' to call students back into the district and teach them and just hope something really bad (like what led to a civil rights lawsuit against a Pennsylvania school district) doesn't happen. (At which point, time to call in the lawyers, if such has not already occurred.)

But I am really sounding sour and Tuesday was a good day, on top of a spate of good days, and Charlie's teacher was so glad
to say "no more helmet!', and I was so eager to tell Jim, that let critiques of school districts and special education administrators and the whole apparatus of teaching autistic children go, for the moment. Our experience has shown me a lot of the limits of what can be done and reinforced the truism,
you know your child best and you're the ones best able to take care of her or him and identify his needs. I'd like to think that school districts are looking out for the best interests of our children. I know that Jim and I are looking out for Charlie's best interests. This whole helmet saga has reinforced in us that, yup, though we often can't seem to make a decision without going through a lot of self-doubt, we may actually know what we're doing.

Charlie still wears the helmet at shcool when he's having a difficult moment. As in, he only wears the helmet (it's like the one wrestlers wear, soft and with ventilation holes) when he's upset to the point that his head needs protection and then only for a pre-determined (10 minutes) period of time. These have been occurring infrequently, and we're told the same day when such occurs (not over 2 weeks after something happened). Since last winter when he started at the BAC, Charlie has been wearing the helmet for progressively shorter periods. By last week, he only wore it for a half-hour in the morning. 

Further, his teacher and the school staff clearly wanted him to stop wearing it. That is, they didn't see Charlie as a kid who has to wear a helmet, as was the case at his previous school (ready for them to deny that—sorry, getting sour again). His teacher and the staff were quietly confident that Charlie wouldn't be wearing it forever.

And he's not.

Charlie's teacher had asked me what we'd like to do with the old blue face-mask'd helmet after they'd gotten the new one. Our former school district had said they didn't need it back; as they had paid for it, it is technically theirs. I had told Charlie's teacher that they could dispose of it if they wished—the inside is very moldy and stained and was already last fall—but yesterday I had a moment when I thought, I should have said we'll take it back and delivered it to our former school district's Board of Education offices and told them, here, you can have it back, it's your property. You paid for it, you get it.

Let it go.

Tuesday afternoon I had my long walk with Charlie and some super-fun car rides to and from school, with jazz and R & B playing away and him and me throwing around words and stopping at a dingy 7-11 for ginger ale and what looked like a very mass-produced brownie (Charlie ate it all and tossed the cellophane wrapper into the back of the car). Jim came home early and he and Charlie went bike-riding, turned around after a few blocks, beat a thunderstorm, and then went out again. Charlie helped himself to watermelon and the computer on returning and then wanted one more walk with Dad after which he scarfed down a burrito, brushed his teeth (sort of) and showered (yeh, on his own, while Jim and I sat downstairs), asked to use the computer for a few more minutes, went to bed.

Let it be.

This life is good.

11 Responses to “Let Go and Let Be: No More Helmet”
  1. Hai Dang says:

    I am so happy for Charlie. 🙂 Overall, it is a great job for the team of three.

  2. feebee says:

    It sure is. I had a great day today with my kids, most especially with That Boy (I blogged about that part), and I’m so glad that Charlie is flying high at the BAC. You guys are household names around here. We talk about what Charlie is doing. I hope that’s not too weird 🙂
    Bede and Charlie are similar guys in many ways. Moderate-severe autism, need to be moving, moving, deep desire to connect. And love. The differences are less relevant (Bede is hyperlexic, for one, and about six years younger) than the similarities.
    Lovely boys!

  3. TC says:

    This is huge. Just huge. Go Charlie!

  4. emma says:

    I admired your restraint for not giving the helmet back, but, you are right.
    Let it be.
    Life is good.

  5. Jersey Mother says:

    A huge step into greatness!

  6. Linda says:

    Great news. Go Charlie!

  7. Niksmom says:

    Smiling through tears of joy for you and Charlie! Yes, as Emma wrote, I, too, admire your retraint in not giving the helmet back.
    Keep on trusting those instincts with Charlie; they seem to have steered you on a pretty true course thus far. 🙂

  8. Jill says:

    That’s great about the helmet being history. Maybe you can use it as a planter? I’m sure there are some avant garde art galleries in New York that would pay handsomely for the helmet filled with computer keys, M&M candies and some of those little plastic green army men. You could entitle it “Struggle to Communicate.”
    I’m just kidding. If it were me I would deliver it to Charlie’s former school with a note attached.
    Helmets are so not cool. I know they’re sometimes necessary but the way they’re used in most autism classrooms they become a permanent part of the kid’s head and it results in more head banging and wails of discomfort.
    Did you find that Risperdal made Charlie gain weight? I’ve heard that’s one of the unpleasant side effects.
    With Charlie’s liking for routine, has he expressed any desire to keep wearing the helmet?

  9. Yay for that helmet being history. Good for you not giving it back. At least if they want to put one on someone else (and I will agree it sometimes is needed) they’ll have to put out the cash for again. I know they’re tight for cash over there in NJ too, so they obviously wouldn’t want to spend money on it unless it was really needed.

  10. autismvox says:

    No, he doesn’t want the helmet on—he’s not happy when he has to wear it at school (because he’s having a tough moment). And his teacher told me that, when he got to take it off, he always had a big smile—-I think one of the problems with the situation at his old school was that the use of the helmet was ‘normalized’ and it began to seem that he should be wearing the helmet, rather than seeing it as something temporary.
    We have a karate sort of helmet at home and are ready to follow the same procedure as is used at his current school. Haven’t had to use it, happily.
    The helmet he had—the one I was, um, sorely tempted to return–was specially made for him—fit his head really tightly. And he grew over the course of wearing it but still had to use it……It got really….grungy…..inside and at one point Charlie had impetigo on his scalp for almost 6 months in 2009 — things can get better!

  11. autismvox says:

    not weird, I’m totally honored!
    I’m thinking we are going to have end up in a climate where it’s temperate year round precisely because of the ‘always moving, moving’ issue. Hate to say it, but global warming has been giving us milder winters in NJ and that has made it possible for Charlie to get in a bike ride almost every month of the year! He really likes to be outdoors, too—exercise indoors isn’t the same.
    I always think of Bede as ‘the Venerable’…..

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