Last week Sweet M stopped talking. She'd give a thumbs up or a thumbs down as "yes" or "no," and if you insisted, she'd yield and use words. But other than that, she was incommunicado.
At school -- during the last week of school -- the kids were writing in their notebooks about what they were going to do on their vacations. Many of the kids were writing about going to camp. But M wrote that she was going to a hotel, and going in a swimming pool there. When M's teacher asked her camp, M turned to her and growled, "No, I haaaate camp."
As I mentioned back in March, Sweet M has not had good camp experiences. Last year she was at an inclusion program at the local Y, and that didn't exactly work out swimmingly. In fact, Sweet M didn't swim at all because no one was allowed to help her with her hair and swimsuit (as no one was allowed to touch her for fear of allegations of abuse).
And the year before she went to a day camp an hour out of the city, which involved getting up at 6 to catch a 7 am bus several miles from our home. When we went to the parent's day we saw how miserable she'd been all summer and our hearts broke.
On the advice of M's doctor, I contacted Karenne Bloomgarden AKA "The Camp Lady," who runs KB Camp Services in Manhattan, and helps parent's find appropriate camps for their kids. Karenne was fantastically helpful and knowledgeable, and came up with three possible options that I followed up with.
Unfortunately, the first one was full with a long waiting list.
The second one wound up not seeming appropriate. Even NT-me was starting to feel dysregulated when the camp representative started talking about the outdoor morning assembly with the groups doing cheers.
But I was excited about the third option: excited and amazed to learn that there is a camp for special needs kids opening up just two blocks from where we live. So I went about enrolling Sweet M.
Now I am concerned.
When Sweet M stopped talking, I sat down with her and asked her if she was worried about something. She didn't say anything. I asked if she was worried about camp. She nodded her head. Then I said that if camp was no fun that she could just stop going and we'd do something else.
And guess what? She looked obviously relieved and started talking again. She said, "I hate camp."
I said, thinking maybe we could get away with a name change, "What about summer school?"
"No, NO summer school."
So I said she could go to new and better camp for one week to try it, and if it's no fun, she could do something else.
I'm thinking I may take a cue from MOM-NOS and figure out some way to keep Sweet M home -- get her a babysitter to take her out to do things this summer instead of going the camp route.
This morning I called the camp to ask if they'd prorate the camp fee if it didn't work out for Sweet M. I could use the refund money to hire a babysitter and set up a summer activities schedule for Sweet M.
They said no. No refunds.
You can't really blame them -- they have a program to run. They already hired their staff, etcetera, etcetera.
But then when the administrator wished me "good luck" with a tone that rang of "sorry, not my problem that you got suckered into paying for our camp" -- then I was feeling pretty damn cranky myself.
You know, I'm starting to hate camp, too.
Keywords: autism • Asperger's Syndrome • ADHD • learning disabilities • special education • obsessive-compulsive disorder (OCD) • parenting • family life
5 comments:
More like, that camp director needs to learn some communication skills!
Sweet M's school doesn't have a summer program? Of give some assistance in finding one for her?
Camp is not for Charlie. But he is looking forward to the return of the "yallow schoolbus" on Wednesday----but's it not camp with morning assemblies etc.. The swimming is up to me.
Last summer, myself and a bunch of aides took four autistic kids out and about every day practically, for fun times together. All of them were older (ie, over 10yoa), and we went to the zoo, or Calaway Park, or played games at the park, etc.
We had about five aides as a general rule. That may appear to be overkill, but we had good reasons for this ratio. First of all, myself and the only male aide were the only ones who had experience doing this sort of work, so we were basically training the other girls. Secondly, two of the kids were male. One of them was AS, and the other was his moderate-severe brother. One of the girls was moderate-severe (in a different way from the boy), and the other I think of as being just plain moderate, with some MR due to excessive seizures (difficult to control for).
All of them had different sensory needs, which made the amusement park interesting. They all were at different abilities socially and communicatively, though all use speech as their preferred method of communication. The moderate-severe girl had the most difficult behaviour, and mostly it was difficult because we couldn't easily predict its occurrence (she would grab someone's hair and it was nearly impossible to get her to let go; she got me twice last summer). She had very flat affect (not very emotionally demonstrative, facially-speaking), so she didn't really look any different when she was stressing than when she was relaxed, but when she was stressed she'd just suddenly grab someone's hair. Luckily she never grabbed any strangers' hair...!
Anyway, that's one idea for a summer fun stuff. It's not camp, but it gets the kids out into the community.
I was a little surprised at the camp administrator's response, and had to wonder if I wasn't hearing something that wasn't there. But then I thought about it, and it really was a "good luck -- your problem not mine" sort of good luck. Yes social skills training may be in order. :)
M's school doesn't have a summer program. Most of the kids are LD with moderate to no behavioral challenges, so they mostly go to regular camps that have long bus rides on big buses. (A definite no-go for Sweet M.)
I love the idea of her going out with a group of kids and aides in the city every day . . . and that is what her new camp is supposed to be doing. But I'm not confident about any of it at this point.
Yeah, the stuff last summer was all parent-organized. I'm sure they'll be at it again this summer, too. More's the pity for me; I'll be cooped up in a church office all summer. :P
I miss my kids when I think of the fun we could be having. There are things I don't miss about that work, but none of it has to do with the kids themselves. (I would gladly have my hair pulled by that one girl to be able to go to Calaway Park with everyone just once this summer.)
Had anyone a met young Larry they would a found 'im just as perpexing as the modern day geezer.
Where I considered there was no point in communicating then I didn't
Not that I could not talk by the time I got to school (thank God there was no pre school in my day) I was simply loathe to unless I could see a reason to and mostly I could not being as I had not interest whatever in "social" activities.
Well there were people in my life, I shared my family with a brother but for the most part my erly years were wonderfully devoid of other people, interaction on my terms only, and they are still despite the mellowing of the years and pragmaticism, still my terms. My dads favorite phrase about me at the time "You can take a horse to water but you can't make him drink"
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