Tuesday, May 17, 2011

Sleepaway camp for kids with special needs: Should he stay or should he go?

A couple of months ago, at a fundraiser for Max's school, I met a very cool mom who told me about a sleepaway camp for kids with special needs. (For privacy reasons, I'm not naming it now.)

First thought: I don't think Max is ready for that.

Second thought: It could be really good for him!

Third thought: I don't think he's ready.

And that's the tug of war that's been happening in my head ever since. There's an open house (open camp?!) coming up, so I'll be able scope it out. Sabrina's already jealous at the mere thought that Max would get to go to sleepaway camp. Max nods his head vigorously when I show him pictures of the place and ask if he wants to go.

I have tried so hard to encourage Max to be more independent. I know Max would enjoy the outdoors and all the activities (he loved the family camp weekend we went to last summer, although he spent a disproportionate amount of time being chauffeured on a golf cart). And this camp has a well-trained staff, a team of nurses, and everything else you'd need at a camp for kids with special needs.

Then I picture some counselor getting Max dressed in the morning (WITHOUT ME) and I picture Max eating spaghetti (WITHOUT ME) and I picture him sleeping alone in a bunk with a bunch of other kids and a counselor (WITHOUT ME), and I sort of get freaked out.


Would you do it? Could you do it?

Photo: Yes, it's from Meatballs


  1. Oh, I feel your anxiety on this situation! Our kids had their first sleep away the same year (Q was 6, G was 9) but they knew all the nurses. Our children's hospital basically staffs the thing with counselors who attended the camp. All are transplant kids - the biggest thing my kids noticed was that all 150 kids took meds. They aren't going this year but we hope next. It is the only camp we know of in GA willing to take kids with life saving meds.

    It's hard to let them go, but I'm guessing your fun boy would have a great time.

  2. I went to a camp growing up and I LOVED it more than I can tell you. It was the one place where I completely fit in. It was good for every kid, regardless of where they fell on the continuum of special needs. I think it would be great for Max. It will help build independence and I'm sure they'll take great care of him. I just can't sing the praises of summer camp enough! It may seem dramatic but I am being completely honest when I tell you it changed my life. It changed the way I see my disability and understand others too.

  3. BW aka Barbara from BostonMay 17, 2011 at 12:40 AM

    You could also consider an interim step -day camp. He could do AM or PM session, with an option to do both if he is willing/comfortable.
    If successful, consider sleepover camp next summer. Some camps welcome neurotypical campers also. You could look for one where he and Sabrina would attend separate groups, but be together for lunch and for comfort, if needed.
    I would suggest checking camps for vacancies before talking more to the kids about it. In Massachusetts special needs camps would already be full for Summer 2011

  4. Camp is far, far ahead of us right now. But, I can say that your reaction to camp is just like what mine has been to many "new" things/next steps in this journey as a parent. Sammie B attends a little center-based Early Intervention program (we call it school!) and when it was first mentioned to me, my first reaction was "NO WAY. NOT dropping her off and leaving her. No way. No how." I wavered a lot over time, and then one day, it was as if I just woke up "ready," and knowing it would be so so good for her. Maybe the same thing will happen with camp - you'll see the place and feel more "ready," than "no way." Max is growing up!

  5. I've wavered too. I would love for Jake to be able to go, but ... Right now I don't think many camps would take him since he isn't potty-trained. He's slept over at grandma's house but still, not the same. If he went, I probably wouldn't sleep well the entire time he was gone. Maybe they should have weekend camps instead of a full week.

    Best of luck with the decision making.

  6. It would be hard but then I freaked out a bit when I learned he was going to full day kindergarten.

  7. Have to agree with the above. We've found Ashley grabs every chance at independence and it is US who find it a challenge.
    The Special playgroups we take him too all report that he doesn't miss us one bit. He has a blast!
    Good luck deciding. :)

  8. Yes. I would. I think it would be great fun for Max and also give you a chance to see him from a new perspective. He will probably be pushed (in a safe manner) to be as independent in his self care as he is really capable of being. Even kids who are not "special needs" get this helpful push from away camp at a relatively young age. It will also give him the opportuntity to make friends and gain confidence. It sounds wonderful.

  9. I understand what you mean, it is hard to decide. My son is 11 years old and he will not stay with anyone but his grandparents, or my brother. He is asked to attend birthday party, and other actvities at our church but he will not go. He does not like to be away from us. I'm trying to get him to do things with kids his own age. If we push the issues we have major melt downs. So as you can see it is tough for us to and sometimes we ask ourselves if you did something wrong when he was little. Praying for you as you make a tough decision.

  10. I'd love to discuss this with you, if you'd like. I'm sending my son, and I have many friends who send and have sent children of varying disabilities, including physical. In many cases, you can choose the amount of time you want your child to go for.

    If you'd like, my email is andmilestogob4isleep@gmail.com.

  11. We have thought about sending our son. He tends to develop mucus plugs while he is sleeping which causes him to de-sat. We know what to do for these and how to handle, but would someone else?

    So we have said that when he can put 6 months together without a de-sat night, then he can go to sleep-away camp. We have a great one that is only a few hours away that I would totally trust with all of his other medical needs.

    Go to the open house and take your cues from Max. He is a great boy and will let you know what he is comfortable with.

  12. I think it would be great for Max AND great for you. It would give you some girl time with Sabrina, it would give Max some independence, and peer interaction.

    It would give you a chance to reconnect with yourself, since so many parents of special needs kids spend so much of their time caring for their child (out of necessity) that it can become part of their identity.

  13. Yes. Parents (and especially we Moms) enable our kids to be dependent on us in very subtle (often unconcious) ways. The more opportunities Max has to relate to people other than his family, the more he will grow as a well-rounded individual. Especially in a protected, caring, supportive environment. Camp staff will call you if there is anything that comes up that they can't handle. Bet you won't get one call. Sabrina will so love having you all to herself. Do it.

  14. Sleepaway anything is a bit far off for us since A is not quite 3. I would be more worried about whether or not he'd actually participate - though he's getting better at that, even if it did take 2 months at preschool to get him into the groove enough to be functional.

    The other aspects, though, are not as big of a deal for us. We've always had nursing; always depended on others to take on portions of his day to day care. I happily await the day (later this summer!) when he's at a point where I *can* turn him over to someone else, in a fairly typical setting, without questioning them over their medical background and experience and training.

  15. Ellen, I did a piece last year on Jewish camps for kids with special needs (http://www.tabletmag.com/life-and-religion/41164/camp-for-everyone/) -- Camp Simcha Special is amazing, and certainly not all the campers are religious. (In general, the Orthodox have done a far better job with inclusion than the rest of our community.) My friend Jeff thinks it's been amazing for Ezra's independence and sense of self. But there's a separate question about whether you think Max is ready to GO. My 9-year-old was ready for sleepaway camp at 7. I don't think my 6-year-old will be ready at 7, and I'm not sure about the year after that. So there's the camp, and then there's the kid. It does sound like Max is so friendship-driven, he might really blossom there. But given how much I waffled and dreyed about sending Josie (who does not have special needs) to camp even as she begged to go, I understand your reluctance! (Email me if you wanna talk to my friend Jeff. Ezra's camp has a 1-to-1 camper-staff ratio.)

    Also: Note the hatey comments at the end? This was because I wrote another column about how privileged and annoying I find parents who can't shut up about how gifted their children are. FUN!

  16. Wow! Sleep away camp! On one hand, he will be certainly pushed to do things on his own, and will have to be more flexible (will they really let him eat spaghetti at every meal? Doubtful.) But, has Max ever slept away from home without you before? Do you think he's ready to do this? It's one thing to show him pictures of the place and asking him if he wants to go there, but does he understand it will be without mom and dad? Eight just seems so young, but maybe I'm just over-protective!

  17. I work at a camp for children and youth with special needs[physical disabilties] (going on my third summer this year) and it does help them with their independence and also working on life skills, physical goals, make lasting friendships and have a blast. But the child defintly needs to be ready. I don't know much about Max but perhaps he may be ready? though as others have asked has he ever been away from home withou you before? Did he cope well? Sometimes a smaller change is best and he can try sleepvers at grandparent etc for this summer and perhaps transition to a camp the year after. This is just a suggestion.
    At the camp I work at we have our usual 10 day sessions and then we also have a five day session for first time campers, the younger ones or just ones that are not ready for 10 day and they enjoy it. Most transition to ten day and do fine but i worked with a camper last year who just could not do the ten 10 it was too much for her. SO each child is different but I say if you think Max would benifit do well I would say go for it. Going to the open house at the camp would be a great idea to scope out the place and talk to people.

  18. My son with autism is 11 and this year he is doing sleep away camp for the first time. I did A LOT of research and found the perfect camp for him. If you're looking for me in August, I'll be up a tree somewhere outside of camp boundaries dressed in camoflauge holding a pair of binoculars. lol!

  19. OMG, no way. Not ready for that AT ALL!! Can't even think about it!!

  20. This is just me, so don't take my advice or recommendations as gospel (we know how I sometimes differ from the group).

    Not only no, but HELL NO.

    Why? Too young, too long away from home, I'd never get any sleep with worry, too many chances for things to go wrong, too many horror stories about perverts in those camps, too much separation-based stress and agita....a day camp? Sure! In a heartbeat!!! Overnight? Not only no, but, as I said, HELL NO!!!

    And no one can accuse me of being a helicopter mom--I'm one of those "bad" ones that lets the kids play UNSUPERVISED, in the MUD, in the back yard! In weather below freezing on occasion!!

    I just have always had a BAAAAAAAD feeling about those places. Don't mean to paint with a broad brush, but I wouldn't feel comfortable. AT ALL!!!! If both I AND my parents needed to get away for a vacation or something, I'd rather have someone come in and take care of the kids in their own house and send them off to day camp for a week or so.

    Now, my favorite movie in the world, BEST BOY, has our disabled hero going to overnight camp before he transitioned to living in a group home...but he was an adult when that happened who had benefitted from some "living skills" classes, not a little boy.

    I just couldn't do it. But like I said, that's just me. Don't go by me, you go with your very own gut!!! Only you know what your kid is capable of handling.

  21. My daughter with cp attended a 5-night sleepaway camp through Easter Seals for the first time in her mid-teens. I was so sure I'd get a phone call mid-week asking me to come and get her. But she thrived! The counselors were sure tired by the end of the week. She attended each year for 5 or 6 more years and it was such fun for her each time. Each person with special needs is different, of course, but you're the one who'll know when/if Max is ready. (A suggestion might be trying a shorter duration first - the Easter Seals camp in our state offers respite weekends throughout the fall/winter/spring when summer camp is not in session.) Good luck!

  22. My kids all went to summer camp for kids with disabilities, starting at age 7. They loved it! And, except for Jesse, none of them had ever spent the night with grandparents or anyone else before that experience. I would say that there is little time for being homesick...during the day it's non-stop activity, and at night they're so tuckered out, they fall right asleep. I'd say that counselors at special needs camps are there because they really have a heart for special needs kids...it's not just another summer job for these young people, and a lot of them do it for years, so you get some really awesome counselors. Of course, you know Max better than anyone, but usually it's the parents who worry 'way more than the kids!

  23. I've been a couselor at similar camps! My advice: Kids are always way more ready than their parents. And just in case there are times where the kids aren't as ready, the staff has the training and the background experience to handle it in really reassuring ways.

  24. N and Z are way off from this (being just a year) but I went to camp every year when I was a kid, from about summer btwn 2nd and 3rd grade until summer btwn 6th and 7th (broke my arm couldn't go that year) and I loved it! But I was always the kid who according to my mother would "go with anyone anywhere". I was definitely pretty independent. However, the one year (maybe 4th into 5th grade summer?) we tried to do 2 weeks in a row. I couldn't do it. Was too homesick and mom wound up coming to pick me up after 8 days (she had come to visit me and I asked to go home, if she hadn't come to visit I might have made it through, lol)

    I had always planned to send my kids to sleep away camp (assuming personality wise it worked for them) because it was a great experience for me. I don't think that that should change just because N has CP. It might mean N and Z can't go to camp together (as Z is typically developing -albeit delayed due to prematurity) But I think it fosters independence and self reliance which is important for every child special needs or not.

    If you think Max is emotionally ready to go, then I would give it a shot. Maybe test out a sleepover at a friends/relatives before just to make sure he is ok from you overnight.

    Just my two cents!

  25. Friends of mine will be sending thier 1st grader with autism to a sleep away camp this year. Mom and dad REALLY need the time. Based on how their son does, I will do my best to send my son (who is a year older) next year. If you would have asked me last year, I would have said no-way, no-how. But my son has done lots of growing this year and so have I.

    My advice is always to take these things year-by-year. You have to do what works for you.

  26. I only went to day camp and they were really fun, with respite workers. But, I did go to one overnight camp. And I stayed up all night! I didn't get any sleep for the whole weekend or three days or whatever it was...because I missed my mom so much!
    And then she wondered why I wasn't calling her when I came home:)

  27. I don't know if I could do it, Ellen. We have one near us that Olivia could go to...but I just don't think I could do it for a week. Maybe one night? I don't know. I don't think so.

  28. It's hard to say for sure, but if the opportunity for camp came up and I was convinced it was well staffed and well run... I'd be very nervous and a little a freaked out, but I think I'd let my son go.

  29. Oh. Wow. Survey says....YES! Assuming Max is truly ready. Which I think he is; he loves the outdoors and being around kids. And he had a blast at the camp we went to last year. He's never slept away from us, but I honestly think he'd do fine. We're going to take him for a visit in a few weeks.

    This mostly about my own fears. Felicia (who I am convinced was related to me in a former life) touched on the main one: the prospect of pervs. That terrifies me. I am going to call the local police and see if there have been any complaints filed and otherwise do due diligence.

    It's interesting to hear about other camps for kids with special needs; I'm going to check them out.

  30. I've worked as a counselor at a special needs camp the past 2 summers, and I'm heading back for my 3rd time! I've met with several REALLY anxious parents who aren't sure about leaving their child at camp, but at the end of the session they come to collect their child and see how much fun they've had and know they've made the right decision. The camp will keep you updated though if you're really worried, and you'll be able to write letters etc =)

    It'll give you some time to share with your daughter and Max will learn lots while away, and get to experience things he might not be a fan of if you offered the chance because he'll see everyone else doing it.

    I'd totally say go for it, but I think I might be a bit biased because I just love working with the kids =)

  31. I'm coming at this from a slightly different perspective. Yes, both my kids have special needs but neither are anywhere near old enough to go to sleepaway camp (5 months and 2 years). However, I co-run a summer program for teens with Marfan syndrome & related disorders.

    Right now it's a day program at a hotel, a long weekend. There's a program for kids 5-12 and one for 13-19; I run the latter. I really hope to someday help open a weeklong sleepaway camp for them, but that's a ways out. I am always a bit surprised by the number of parents who are upset over leaving their teens with us, even though we're in the same location. As Peggy said, I think we sometimes unintentionally make our kids more dependent on us. I get nervous about the idea of sending M to school/therapy without me next year but at the same time I recognize things like this are important for not only his growth, but mine.

    In any case, the change I see in those teenagers in just those 3 days is AMAZING. Not only do they take new ownership in their own medical care, but they are able to bond with other people who have similar medical challenges. It's a huge self-esteem boost and really changes the way they see themselves. They go from being "disabled, sick" kids to teens who have different abilities from their peers. It brings me to tears each year, that's how beautiful it is, and I'm humbled and grateful to be a part of it.

    So please, do send Max to a sleepaway camp someday. Only you and your husband and Max will know when he's ready, but the benefits of these camps are enormous.

  32. Molly did a sleepaway Easter Seals Camp a few years ago (I think she was 8)- I'm sure she was more ready than I was too. But when I came to pick her up I had to find her in the middle of a pack of kids who were all singing camp songs at the top of their lungs (you'd have to know Molly to know how much she would LOVE this ;-) (Assuming of course that it is a reputable camp) I think it would be great for both of you - DOOOOO IIIIIT! ;-)


    I waited until Ben was 15. It was the best experience of his life.

    This is an incredible opportunity for Max and for you. xo

  34. We sent ours at 6 - much more delayed than he is at 11 (Gr 6 and passes for normal) - still with some toiletting issues, poor speech, and definately autistic. The camp is all of 3 miles away and only for the weekend. We opted to bring him home overnight the first year. So he'd stay until after campfire and be back for breakfast and had an amazing time. He's going yet again, this year and has only missed one year so far.

    Unfortunately the younger cannot go. He needs constant supervision that I cannot supply and the rules for toiletting a child with special needs and.... Oiy!!! So, if you get the chance and he's able to go... send him... even if you can make arrangements for him coming home nights that first year.

  35. I TOTALLY understand. My daughter is going to go to sleepaway camp next year and I am already sweating....I am sending her to the same camp that I went to and that is giving me some peace of mind. I think when you go to the camp, you will get a clearer sense of the plave and will feel better about the whole thing (or you won't and then you'll know that it's really not for you and Max). OY, it is VERY hard to let go of our kids, isn't it?????

  36. Oh man, that's a tough decision. You'll make the right one for Max.

  37. It's so easy to say YES when it isn't your kid. I don't know whether that's because a person wouldn't care the same about another kid or whether distance gives perspective.

    In the end we can't stand in our kid's way, whether they have special needs or not. I know I would be anxious and seeing problems at every step. I suppose ultimately it comes down to what Max would like, how good the staff and facilities are and how at peace you can make yourself with the situation.

    I hope the taster visit will help answer your questions.

  38. Hi! I work at a camp for kids who have disabilities (most of our campers have CP or Spina Bifida). I'm not a mom so I don't have that perspective on camp, but from the perspective of a camp staff, camp is an amazing experience. It is a great place for campers to make friends, try new things and build independence. And of course have a huge amount of fun! Good luck with your decision and even if Max isn't ready for camp this year, I hope you consider it in the future.

  39. I've been reading your blog for a while, but commenting for the first time.

    Last summer I worked at a sleepaway camp for special needs kids. They were there for less than a week, had one on one counselor time + a TON of fun!!!

    Even wheel chair bound kids got to rock climb, zipline and ride horses, etc. And they all had fun! And we took great care of them!

    So I can feel your anxiety, being a mom of a 5-year old, I have hard time letting him go even to his grandma's house... But at the same time, I think it'll be great for Max, you both can have some time apart, which I think is important.

    I'd say go to open house and see what it's like! Then even if you do send him, nobody is stopping you from going to pick him up whenever! :)

    P.S. - My son's favorite color is purple too! :)

  40. My guess is that many of the people here who are not comfortable with the idea of sleep away camp never did it (or at least never liked it). Where I live it's very common. And it's not a new thing. My mother went to sleep away camp. And so did my step-father whose camp experience was more than 75(!) years ago!!! I did and my kids did. As I told a friend who moved here and couldn't believe that so many kids went, "Jews send their kids to sleep away camp, and have for more than three quarters of a century". Indeed my stepfather says that his camp, which was not Jewish affiliated was 90 percent Jewish. Not sure what it is about our culture but it defintiely has a thing for sleep away camp!

  41. Ok, I'm late on responding to this one.
    I would say NO to this camp but YES to a camp for all kids. Most kids wouldn't be ready for camp until they are approx 9yo in my opinion so we plan to do the school camp then and just maybe one of us will have to do the sleep over since Mac doesn't yet sleep through the night (i'm volunteering Mac's dad since it will be a boy's tent/cabin). Why oh why are we having to have "special" stuff. Why can't we just have "kid" stuff.

  42. I remember that anxiety. My DD is now 15 and has been going away to camp for 5 years. I just heard about them 5 years ago. I cried after dropping her off but seeing how much she enjoyed being around kids like her was amazing. She was so excited to go and is every year. They tailor the activies for her so I dont have to worry about her sitting on the sidelines. She gets to participate and that is priceless in a world that is not always forgiving of special needs. I send her a couple of letters while she is gone for the week so when the mail runs she gets a little something from us. Anyone who is thinking about it who would like to chat contact me at kristin(at)couponscribbles(dot)com. I guess im a veteran at it now. It also helps with socialization.


Thanks for sharing!

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