Musings on Camp and Independence
July 27, 2008 by Kristina Chew, PhD
Filed under Health
Charlie’s never been to summer camp. We’ve thought about it every year and been urged to send him off, and end up with these rationalizations:
1) He’s got Extended School Year until late July or early August—next week is his last week and, far from just “only maintaining” his skills, he’s moving ahead. It also looks like (following a class field trip last week) that he’s taking a liking to roller skating.
2) There’s a day camp run by the state’s Department of Developmental Disabilities (DDD) but—as another family we know told us—the pace is sloooooow and it’s not only for autistic children. Charlie’s done well in his current school placement because the pace is anything but slow; it’s intense and he’s always kept thinking and busy, and, needless to say, he’s done well with this.
3) I am a worry wart on this one: I am pretty sure that the staff at the DDD camp will not have the training or supervision of the instructors in Charlie’s school district. He had an “incident” with a bus aide (who doesn’t get much training) last spring and, as far as I could tell, it was because she wasn’t sure (because she hadn’t been taught) how to get Charlie moving when he’s curled up in his seat, hands over ears; she pulled at him and he was aggravated (as was she, for the rest of the semester). Charlie has very little language and would be unable to tell us what has happened. While his self-injurious behavior occurs very rarely, it’s likely to increase in a moment of stress, and especially when he can’t communicate, and when others aren’t sure about his communication.
4) There are camps for working on social skills for kids with Asperger Syndrome and PDD-NOS, but Charlie doesn’t have enough language and needs more supervision because of the potential of behavior issues. (I’ve met this problem in investigating social skills play groups and, after reviewing his application form, the directors have indicated that while they’d love to have Charlie, they’re not sure he could fit with the group.)
Other parents have told me about hiring aides to attend a camp for typical kids with their child and that’s the option I’m most curious about. I’m not sure how much he could handle, but one never knows until one tries.
Today’s New York Times reports on how parents these days are increasingly demanding “helicopter parents” who insist on knowing what Johnny’s doing every moment and see nothing wrong with swooping in to cart a child off for an audition for a commercial. The article has an undertone of “parents just need to cool it” and at another time I’d be inclined to think that, but then I pause and think, look in the mirror! I’m that overbearing parent who needs to know exactly what her son is doing all the time, gets alarmed when there’s no daily email.
Of course, Charlie has a lot of needs that are far beyond that of the average camper and he’s not yet learned to call me on a cell phone (or to keep it hidden from the camp counselor). The road to independence isn’t easy for a child, or for a parent.
Hi Kristina…Jonah starts his two weeks of Y camp tomorrow. I just got off the phone with the aide who will be his one on one the next two weeks. We touched on the important things quickly. I always write down a more detailed list of things to remember and put it in his backpack for his aide. The Y’s aides are trained to deal with an entire range of learning and physically disabled children. If you ever have any questions on our Y’s program, just let me know!
Camp is longer time at six weeks than the four weeks of ESY and at 4 hrs of that or 6 hrs of camp plus they have fun at camp. For many years now their schools have not had ESY so they would be bussed to another school and teacher, students from all over. It is many of the same families at camp every year. Nick 8th yr and Matts 7th year.
We’ve not done camp yet either. Basically it boils down to me being scared out of my mind. When we do eventually send Patrick to camp I believe it will be a ‘typical’ camp with a 1 on 1 support person.
Buddy Boy went to two weeks of a “typical” camp hosted by a neighboring school district, where they provided a 1:1 aide to anyone with an IEP, even from out of their district! He then went to two weeks of an autism specific camp.
He had only minor issues in both venues.
Joe
Something called Summer Sensory camp in Gallipolis, Ohio.
Great article, Kristina, you brought out all the questions I had about day camp this summer. I, too, am that overbearing mother, out of necessity to keep routine and life on an even keel. I suspect most of us parents are this way, because so much does effect what happens at home.
We are in the middle of a wonderful day camp experience. I had no idea how it would go. Our ESY is 3 hours 3 mornings a week for 6 weeks, and last summer I had a hard time filling in all the extra hours with a routine. So we decided to try the local college’s day camp. The nurse has a son with autism, so over the years she has helped to coordinate and facilitate a mini program within the day camp for autistic kids. They have more counselors, and assign a counselor to my son at the beginning of the day to get started and at times of transition, but otherwise he is there doing everything with the other kids, and he gets to swim once or twice a day, which he loves, just like Charlie! In getting to know the counselors, the head counselor is a SPED teacher, and several student counselors have siblings or other relatives with autism, and many work or are training to be in SPED. There is a lot of support, although not exactly 1:1.
I didn’t know how it would go, it is huge, more than 300 kids, and loud, they have a band and play old time rock and roll, just had a visit from “Elvis” last week! But A LOVES it! He is having a blast, and has learned to participate in group games!
I’m glad we tried it, he is happy, he is learning a lot socially this summer, is getting a lot of physical activity. I may find some babysitters for the future, too!
We have a good friend whose wife, we just learned, works at a special needs camp. The program runs for a month in July and 3 weeks in August. He was trying to talk us into considering letting Gus go, and we had to explain that Gus isn’t ready, and neither are we! I’ve never been too keen on sleepaway camps – I wouldn’t go as a kid, and I doubt my kids will either. I’d rather spend the time with them and take them camping on weekends for family time.
Kristina:
Could you describe for parents of other autistic children the type of Extended School Year services that Charlie has received? My son gets ESY, but I think it really could be more/do more. First of all, it is pathetic the amount of fighting we have to do to get ESY. Additionally, it is really pathetic that the schools do not simply give autistic children summer school to keep them primed and ready for learning all of the time. Sounds like it would be the appropriate part of “free appropriate public education”. But hey, I’m regularly subtly reminded by school officials that I am simply/only an opinionated parent. Geez, I’d better get off the soap box before I fall or I am pushed off…
Thanks!
My son, age 8, went to 2 different one-week day camps this summer designed for typical kids. One was called “camp invention” which involved lots of messy crafts and the second was called “cautious kids,” teaching bike safety as well as general safety and “stranger danger,” etc. For each, his dad acted as his 1-on-1 aide. He also is in a fairly unstructured parks and recreation program at the park a block from our house, where he has only recently been able to get by without an aide. (Dad only a block away and available by phone, of course.)
My husband reported that another special needs kid (aspergers maybe) crashed and burned at the invention camp–he was sent there with an untrained teen as his aide, which didn’t work out at all.
All in all, I suspect getting the right aide is the key to good summer camp!
My son attended a special needs residential camp for five days this summer. I worried myself to death over whether or not it would work. My dh was convinced it would work. Noah’s teacher thought it a great idea. I fretted about everything from whether he would eat and sleep to would he be happy or miserable. I spent the whole time waiting for my phone to ring with a camp director telling me I had to pick up my son. It never happened. Although he can’t tell me so verbally, I know he had a great time. He was in a fantastic mood for days afterwards and he always puts on his camp shirt the second I clean it.
Thanks so much for the inspiring accounts—–ok, I’ll start planning for next year.
Here’s a 10-day day camp for kids with autism and Asperger’s in Pennsylvania.
Kristina,
My son’s last day of summer camp was today. He got two awards! The Flipper Award for “most improved swimming” over the summer, and the “Cub of the Day” award with a trophy (both trophy and medal had to be returned at the end of the day).
But the best part was that more than 10 counselors and the nurse came to me and told me what a wonderful kid he was, how much they enjoyed him, and they hoped to see him next summer!
I’m floating…
@Storkdok,
Yay yay yay!
Two more camps for autistic children: film camp and, in Fremont (CA), a camp for “predominantly autistic kids and their parents of Chinese heritage,” run by Friends of Children with Special Needs Dream Center.
I added those two camps to my article
Choosing a Camp for a child with autism
http://www.bellaonline.com/articles/art33762.asp