After the success of Max's week at sleepaway camp, I've been looking into options for next summer. He might return there but I also want to find out about day programs that mix kids with special needs and kids without. An inclusionary program. A couple of comments on my "Should he stay or should he go?" post had gotten me thinking (a rare occurrence): Why should Max always do special needs programs? It would be good for him to be around so-called typical kids. (I always say "so-called" because, really, what's typical?)
It's been a sobering search. First I asked on my mom e-loop to find out which camps in our area host kids with special needs. The first one I called said that I would have to hire a person to "shadow" Max. A possibility, but I wasn't that gung-ho about finding someone given that I like to lie around all day doing nothing except asking the kids to feed grapes to me. The next camp I called wouldn't let Max come for less than three weeks, even though I explained that Max is in a year-round school program and only has off for two weeks at a time. Another camp was more geared toward children with cognitive disabilities. Another said that they do hire shadows for kids, but the fact that Max wasn't potty trained was a deal breaker. I told them how disappointed I was.
I am honestly not sure whether Max's resistance to potty training is because of his disability or because he is mentally unwilling. Probably both. Kids with cerebral palsy, who have issues with muscle control, may not always feel that gotta-go urge. We think Max does, although the other night, he was wandering around in his birthday suit before bathtime and he let out some poop on the floor.
I sighed loudly, and Max said something to me. I thought it was "I'm sorry" and perked up. Good! He realized it was gross.
"Nooooo," he said, shaking his head. Then he said it again. That's when I realized he was saying, "It's funny!"
"No, Max, it's not funny!" I said.
He laughed and again told me it was funny. Boys and poop, what can I say.
Today I printed out a bunch of color photos of an electric Lightning McQueen car and I am posting those suckers all over the house. If he potty trains, he gets the car.
Anyway, back to camp. Last Friday, I visited the a camp that has a dedicated program to including kids with special needs. Why it's the only one in our state, I don't know. They find the shadow, although he or she is officially considered a "counselor" and the other kids don't know that he or she is there to specifically watch your child.
I am telling you, I almost had tears in my eyes as I did the tour. The program director pointed out the shadows as we walked around, who blended right in with the rest of the counselors. No kids seemed to be outsiders or "special." There were just hordes of kids mingling and having a great time. I think we're going to try Max there next summer for a couple of weeks, and I am psyched.
Meanwhile, today a reader (thanks, Sara!) emailed me about Camp Bennett, a camp in California for childhood stroke survivors. It's a three-week intensive therapy program for kids with intensive brain damage. Bennett is the son of the camp's founder, Audrey Vernick; when he started having seizures at five months old, doctors discovered he'd had a stroke in utero.
Camp Bennett sounds incredible, even though it might not be Max's idea of a good time. There's a big focus on constraint-induced movement therapy, in which a child's stronger arm is restrained in a cast, forcing the brain to recognize the weaker arm and get it moving. Max's challenges lie more in his hands than his arms. Even though his left hand is the better-working one, nobody would consider it "good." There's also a similar program in our neck of the woods, Helping Hands. I'm not ruling it out.
Maybe Max will just spend next summer camp hopping. Maybe I will open Camp Spaghetti With Sauce. We shall see.
Have your kids been doing camp this summer? Found any good inclusionary activities in your area lately?
Don't know if you've heard of Ranken Jordan but it's nearby where I live (St Louis). They have an amazing program. If you'd be willing to travel.
ReplyDeleteHave you ever looked into Adams Camp? www.adamscamp.org My wife and I have been taking our sons for over 12 years.
ReplyDeleteDon't have any recommendations for camp but do have to second the motion that all young boys (I almost want to say all boys/men) think anything to do with poop is funny!
ReplyDeleteAlthough I don't want anyone else to struggle with the potty training like we have, i'm glad we're not alone. Here's my latest messy encounter: http://movingtoazonedefense.blogspot.com/2011/07/with-vomit-and-poo-whats-girl-to-do.html
ReplyDeleteI love the picture of Max with the spaghetti card on his head. He just has the best smile.
I don't know what it is about poop . . . my 12 year old son on occasion acts like it's someone's job to tend to his every need . . . and if he feels a need for power . . . He doesn't do it often to me, but he sure does to his dad and caregiver.
ReplyDeleteMy 5 year old is going to day camp at the JCC in our area this summer and it has been great. They provide an inclusion counselor at no additional cost. He is not potty trained and we were able to sign him up for just four weeks due to summer school needs. If there is a JCC in your area, you might want to check it out to see if they have something similar to offer.
ReplyDeleteI send E. to a mainstream camp in my town every year, and every year I hire a shadow (on my tab). LAst year's camp said that this year they could manage him without one, but then they didn't open :( So he started today with the same shadow from last year, but at a different camp.
ReplyDeleteWe haven't gotten to the camp stage yet, but are struggling to figure out what to do with our almost 2 year old. He's very much in between in terms of special needs. It seems like almost everything is focused on either severely disabled kids or typical kids only.
ReplyDeleteThe worst part I think is that there's no one central place to find all of this information - there's bits and pieces scattered everywhere. So it's really hard to find about what programs there are and then even harder to find out what people think about them.
I sent Ashley to both a special needs camp and a typical camp the last two weeks. I could only describe them both as giggle fests. Ashley loves being with other kids. The city camp was typical camp at our local community centre the city is working hard to encourage kids with different abilities to sign up by offering an aid free for one week. The special needs kids get to swim daily ... Which was great for my little swimmer but I felt a little uncomfortable picking her up when her shared her joy of the swim that day one girl playing nicely with my girl asked what how come she went swimming. I cringed and changed the subject. The typical kids only go once a week to the pool. It was 100 degrees here last week too. Special needs soccer camp was just
ReplyDeleteamazing and free. By the way we are still working on potty training here too and guilt be known it's much more mommy fault then Ashley's.
I sent my 7 year old son this year to YMCA day camp with his brother. In the past he had gone to Easter Seals day camp. I was hesitant, but it worked out great. I read an article about inclusion at camps and it helped validate my choice. Even though it mentions autism it has other information that would go with any disability, for example it mentions kids can't be denied camp because they are not potty trained. http://www.abilitypath.org/health-daily-care/daily-care/playing/articles/accessible-camps-disabilities.html. I hope this helps and that you guys find a camp that works for your family. For us it was nice that both kids could go to camp together.
ReplyDeletei send my daughter to regular camp. nothing special about it. except it is art camp. her LPN goes with her because her insurance pays for it, just like at school or anywhere. she will also go to VBS at our church and to farm camp in a few weeks. i just sign her up and include her medical needs in the space provided. i also make sure it is w/c accessible. camp is just another place where kids need to learn to get along and accept one another.
ReplyDeleteAhem.. if you need a volunteer to go to camp for a week with Max.. ::ahem. hem... raises hand::
ReplyDeleteWhy not talk to the camp that Sabina is going to this summer it makes since because they already know your family.
ReplyDeleteI think what helped me get the ball job in high school was that the coach had known me though my youngest sisters (that's what my mom thinks anyway)
Good to know about other camps! I wonder if there are inclusion sleepaway camps?
ReplyDeleteSherry: So glad to hear about Ashley's funfest!
Dawn: Thanks for sharing that article. I know that Max has a right to be included. The question is, how much do you want to push it if a camp doesn't seem all that amenable? Some also claim they can't do it because Max could only go for two weeks—and they have a minimum of three.
I actually did ask at Sabrina's camp last year. They just didn't seem that into it. But you know, there's a new director. I think I'll ask again.
Oh, and Molly, you are too sweet!
I just want to say that I think it's awesome that you have sent Max to camps at such an early age. I didn't start going until the age of 14, and while I loved it, I wished that I could have gone as early as Max's age. Only because most camps only allow you to go until you're 18 and I loved them that much.
ReplyDeleteI went to a wheelchair sports camp called Ability First. That was an interesting experience because it was intended mainly for wheelchair users. I'm ambulatory with the use of crutches and AFO's so, a lot of the kids excluded me because I didn't know how to use a chair that well, and in their eyes I wasn't "disabled enough"
I went to other camps that were for kids with both physical and cognitive disabilities. The first few years they had kids from the ages of 10-21 or so and now they have the weeks divided from somewhere between 10-15 and 16-25. They extended the age limit since kids loved it so much. At one camp I went to, W.A.V.E. (Water Adventures in Varied Environments) I learned to Waterski and Scuba dove in a pool, among many other water activities. At another, Camp C.O.O.L.(Challenging Ourselves through Outdoor Leisure) I learned to ski, learned to ice skate, played sled hockey and drove a snowmobile.
Oh and there was also Camp WAMP which was more of mountain/camping experience camp, which was fun
I did go to one mixed camp, it was for kids with both mental and physical disabilities and inner city youth, so it was a unique combination. I have to admit this camp experience was a bit more awkward, because many of the nondisabled kids had never been around people with disabilities before. They made a lot of comments, and it was sort of cliquey no matter how much the counselors tried to integrate the groups, but I appreciated the idea and the effort.
Those times at camp were some of the best in my life, and I hope that if Max gets to keep going to camp he'll feel the same way.
As for the poop issue... I think all boys, and I'm inclined to say at least most men, think poop is funny.
As for Max's issues with potty training, I think the Lightning McQueen Car is a great motivator. Embarrassing as this is, if it helps, I had similar issues when I was age. I didn't always have that gotta go urge and had accidents until I was 4 or 5 and then after that finally got handled, I had issues on the other end of the spectrum and had trouble going at all, and needed other intervention to help with that.
That's something I still struggle with, but I just look at it as a normal part of life with CP. Sometimes my muscles just won't cooperate no matter how much I ask them to.
I'm not a parent. But I worked for 2 years at an inclusive overnight camp as a 1:1 staff (assigned to work with a specific child each session but also a part of the staff team). I then worked for 4 years at a special needs camp that took kids with complex neurological disorders in July (ADHD, Tourettes, Aspergers, ODD, anxiety, depression, bipolar etc.) and kids with autism/pdd in August. The last 3 summers I worked as a 1:1 at community day camps (most inclusive, a few special needs exclusive) through a nifty program that provided a 1:1 worker that would attend with your child (with basically any dx) at any camp you chose (and we also did a TON of consulting with camps to improve their inclusiveness).
ReplyDeleteSo if you have any questions about camps I would be thrilled to answer them.
I know this response is a few days late, but I just have to second the JCC recommendation. My memories of summers spent at the JCC camp are some of the best of my childhood. They have a separate camp for kids with very severe disabilities, but I went to their regular day camp, which is fully inclusive. I had a 1:1 (or some summers, 1:2, since I didn't need much help) counselor who would assist me with things like bathroom trips, swimming, and sports. However, she was also just one of the other counselors in my group, and no one made a big deal about it. They really take inclusion seriously, and from my perspective, they did an excellent job. My camp is at http://www.jccgw.org/articlenav.php?id=256 , but I think they have similar programs at many JCC locations.
ReplyDeleteAh I'm so glad you mentioned Camp bennnett. It's my neck of the woods and I'm so hoping Mady can go next year or the year after. The constraint part is what would be so great or her.
ReplyDeleteI work at an inclusion camp. It is a while away from you, though not as long away as CA, Its in Md, Camp Accomplish run by Melwood Rec center (yes I'm pimping it out). Children don't have to be potty trained, they stay from Sun at 10ish am to Friday (I think at 10am).
ReplyDeleteMy son Max who is 14 and has autism has never been in an inclusion program either.He attends a school for children with neruological impairments and autism and partipates in its summer program.But my husband and I have been talking and decided to have Max in an inclusionary camp program this summer. He is going to Kicks a 2 hour daily soccer clinic.Max loves soccer.The derictor is accmadating.Max's instructor is a Special Oylimpics voleenter so he knows what he is doing.each group has 5 kids. His 9 year old sister Maddi will also be there.
ReplyDeleteThis year will be the first year of the Days of Summer Camp. A day camp for kids with Down syndrome and their siblings in Middletown, DE. I am the director and just started it this year- we hope to expand next year and I can't wait for it to start. It should be fun!
ReplyDeleteHi Ellen! Thank you so much for sharing your story about searching for inclusive camps. First of all, I want to commend you for encouraging Max's independence and wanting him to have the camp experience-- you are a super parent! But what a frustrating experience to have so few inclusive camps in your state. At Kids Included Together, we train camps and other recreational programs how to support kids with special needs and create meaningful inclusive experiences. A lot of camps have been really excited to learn how to better support kids like Max so they can invite everyone to participate! Feel free to check out our website-- we have affiliates all over the country, so we may be able to help connect you with someone! I hope that someday, all camps will be available to you and Max.
ReplyDeleteThanks again for sharing your story!
All the best,
Elise Hopkins, Kids Included Together
http://www.kitonline.org