Thursday, May 19, 2011

Are we too sucked into Special Needs World?


Tonight, I got unnerved when I saw a new comment on the post about Max and sleepaway camp. The very wise Gina, who blogs at Inky Ed, is all about inclusion; she mentioned sending Max to a camp for all kids, not just "special" ones. Her little boy, Mac, is in a mainstreamed school in Australia.

CLICK. That was the sound of the proverbial lightbulb going on over my head.

THUD. That was the sound of my heart, dispirited that I hadn't thought of it myself.

I sent Gina a few messages on Twitter. "I wouldn't nag if I didn't think you had it in you to challenge your own thinking and be open to a different path for Max," she responded.

I have been thinking about nothing else since.

Every extracurricular activity in Max's life is geared toward kids with special needs: Softball league, Sunday programs, school, probably camp. He has not one so-called typical friend.

Max is all special needs, all the time. And when it comes to bringing him up, so am I, it seems.

Am I doing Max wrong?

I'm thinking the answer is yes.

Trust me, I don't mean I'm a crappy mother for not having done inclusionary activities. Max has benefitted from the adapted ones we've tried. The personal attention and direction he gets from professionals and volunteers has helped him develop, gain confidence in himself and thrive. I am beyond grateful for them. I appreciate how they welcome Max, quirks and all, which I just wrote about. But it could do Max a world of good to be at activities with typical kids.

Last year, I went to check out a day camp for Sabrina. It was THE quintessential camp—on a lake, with little huts for arts and crafts and cooking, canoeing and other water sports, a big outdoor arena where hordes of kids were dancing around and singing for some sort of event. I choked up as I watched it, hiding my face behind some pamphlets they'd given me at the camp office. I desperately wanted Max to experience camp like that, but I didn't notice any kids with physical disabilities.

"Have you ever had a kid with disabilities here?" I asked the camp director.

He thought for a minute. "Yes!" he said, brightly. "We once had a child with autism! He was on the mild side."

"So you haven't had a kid with physical disabilities?" I asked. "I have a child with cerebral palsy who has some challenges."

"No, we haven't," he said, not unkindly, but he didn't seem particularly interested in continuing the conversation and I didn't force it.

I haven't thought about that again till now. Repressed it. Shove, push, right to the back of my brain, along with all the other pain.

Months ago, I got recommendations for special needs camps from moms I know and Max's therapists. We applied to a sleepaway camp and also a day camp, got accepted. Like me, friends and family thought it could be good for Max. They didn't think about the potential for inclusion; why would they? It seems like a no-brainer that he'd benefit from camp for kids with special needs. I drank that camp Kool Aid too.

No doubt, a special needs camp will be great for Max, especially because it's his first year at one. But including him in a typical camp could open up a whole new world for him. Realistically, it won't happen this summer. I'll have do to my research; I know of no camps that have a mix of kids. Calls will be made. Much convincing might have to be done. Much paperwork would definitely ensue. I'd need to find Max a one-on-one aide. But I don't just think I can pull it off—I know I can, because I will basically make anything happen for this child (excluding the other day when he asked to take a spaghetti bath).

Including Max in our local school isn't the right thing for him now; they aren't fully able to accommodate all of his therapies. But camp? That's a real possibility. Who knows, I might even be able to get him into Boy Scouts.

Tonight, I stepped out of Special Needs World and noticed places with other possibilities. I'm a little scared, a little how-are-we-gonna-do-this but mostly, excited.

Do you wonder about including your kid in typical activities? Have you? I sure could use some encouragement here.


istock/StanOd

61 comments:

  1. Actually, the only special-needs thing my son ever did was go to preschool at UCP. Everything else has been mainstream.

    Honestly, Mack's challenges aren't as severe as Max's, and he manages great on his own for the most part. But I've found that most places are fairly blasé about these things and will basically follow your lead.

    It will challenge Max, but my motto is that our job, as special needs parents, is to prepare our kids to live in the world.

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  2. Frankly, I think of nothing else. I'm guessing that things are very different where you are, but things down here that are just for special needs kids are abysmal--not to mention very difficult to find. I'm thinking very specifically of school and the battle I know is coming about what type of class he should be placed in. And I've been having long talks with the husband about this desire and how different it is from most of the other parents I know.

    From my perspective, I know I'm never going to convince the world that Charlie is just like everybody else, so I need to start carving out a place for him in the community. He maybe the only child like him, but it's my hope that if he grows up with the same children that over time they will just see him as part of the variations on humanity and not as some oddity. You, of course, have many more options for Max since you have a much great population density.

    I think you're following your gut and if your gut is telling you it's time for some inclusion, than it is. I always say that mama knows best.

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  3. Here I am back on the swimming thing again, but it's amazing what it has done for Sarah Kate. Last spring, one of her teachers (who is summer league swim coach) encouraged her to join swim team because she had seen her at the pool the summer before. At first, Mr. Andi and I were hesitant, but she persuaded us to come to practice "just to try it out". Well, we've never looked back, and she even did year-round competitive swim team throughout this school year (not that she is actually good, but she works hard and competes against her previous times).

    Just today, at her IEP meeting, the resource teacher (who is also a year-round swim mom) was talking about how great she has done with it and how great it is not just for here, but the other kids, as well.

    Now she's talking about wanting to play baseball. Heaven help us!

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  4. I'm all about inclusion. Knox, whose physical and mental disabilities are severe, is included as much as possible in mainstream. He spends enough time with other special needs kids in his therapy programs that I don't feel the need to isolate him to just that community.

    Having 'typical' children as well as special needs children, I want Knox to be part of both worlds. Not only does it do him a world of good to build relationships with the mainstream community but it is amazing to see the typical developing children learn about disabilities and open themselves up to a little boy who is different from them. Knox is very much a part of our community.

    The special needs community is great and I wouldn't want to abandon it entirely but I'm so very thankful I've build the mainstream community relationships around him as much as I have. Knox has to live in both worlds so for our family it only makes sense to cultivate mainstreaming as much as possible.

    Good luck with Max. Whatever you do, I'm sure Max will thrive.

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  5. Hi Ellen,

    I supervise summer day camps for my municipality (in Canada) and they are fully inclusive. On any given week we have anywhere from 12-30 kids with special needs across our 15 day camps. We get all kinds of kids and all kinds of needs. We've reached a point where it's not unusual at all to have kids who "talk with pictures" or who use wheelchairs or who need extra assistance throughout the day - in fact, it's the norm now.

    I love the inclusive camp environment so much because it's not only the kids with special needs who benefit from inclusion; our "typically-developing" kids get a lot out of the experience too. Max seems like such a happy and fun-loving kid. I can really see him getting a lot out of being at an inclusive camp, and his fellow campers are sure to benefit from his friendship too!

    Best of luck!

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  6. I'm on the other end of the spectrum. My son has always been in a typical daycare. If anything, the only exposure he has to special needs kids is in his class. I was just thinking the other day of looking into more programs so we can meet more special needs families.

    Don't be too hard on yourself. At least you're putting him in camp this year, which I think is a step in the right direction.

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  7. With my daughter, that's all I want....mainstream. These past few years she's been in an amazing inclusion preschool, but will be in general ed pre-k next year. She is gymnastics and ballet/tap with all typical kids. Is she the only one with hearing aids? Yes. Is she the only one with a balance disorder? Yes. Is she the most ungraceful one out there? Heck yes. But she strives to be like others...and has made immense gains by being with kids at her level or above.

    Just our experience...and I know every child is different.

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  8. Hey Ellen, I would have said so much more about what a great mum (mom) you are had Twitter given me the characters LOL.

    But I truly believe you can take the "thud" and run with it.
    Really excited to see what you come up with. Scouts sounds good - we have thought about it for Mac... sheesh he'd be a shoe in for the morse code badge.

    Yours in constant, ongoing, niggly, and when you least expected it... 'naggy-ness'
    Hugs
    Gina

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  9. My kids took part in both: programs for special needs kids and inclusion into mainstream activities. Both have pros and cons. They all went to after-school programs with typical peers. I signed them up for summer enrichment classes through the school district, and signed Leslie, who has very severe cerebral palsy, up for a class in Japanese culture at the Botanical Gardens. These activities went well for the most part, except that I felt that my kids weren't welcome when they had behavioral difficulties.

    But my one caveat is that in many typical programs, the staff is not well trained and, therefore, your children can be at risk. In one summer day care program, my son Marcus, who is legally blind, was playing tetherball and another child accidentally scratched him in the eye, giving him a corneal abrasion. The staff then let him just lie there for the rest of the day, crying, and didn't call me! Another after school care program let kids push Leslie in her wheelchair (racing), which I had asked them not to do, and a kid turned her over, causing a huge bump on her head. I signed Leslie up for Campfire day camp (Campfire was open to inclusion before many organizations), and she loved it, but then one day the counselor failed to fasten Leslie's seat belt in her wheelchair, and she fell out and broke her collarbone.

    One promising development is that some camps for special needs have now opened their camp sessions to siblings of the campers with disabilities, which results in a nice mix of kids.

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  10. Check out Meadowood Springs, in Oregon. They are a camp that welcomes both "neurotypical" & differently abled children, believing that both of the groups will benefit from each other. They are sort of a therapeutic camp- focused on speech and/or social skills. I have worked there for the past two summers & LOVE it! There are scholarships available, if needed, and their claim is that one session of camp gets as much results as a year of in-school speech therapy. There's singing, campfires, funny skits during the campfire, arts/crafts, canoeing, and swimming (in a pool. There's a shallow one and a deep one.) Www.meadowoodsprings.org

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  11. As you know we're on the flipside of this situation. Ashley has always been in mainstream and has little contact with special needs/disabled kids. We're at a point where special care may be necessary.
    Every decision we make is hard and I know you'll research this to the bone and make the right decision for the little guy.
    (I think he'll LOVE it )

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  12. After all these years, I still have lightbulb moments and thuds of the heart - that's on our Mom union cards, I guess. But I would never in a million years think that you have or every will do Max wrong. We really can't tell what is around the corner, and of course, when we know better, we will do better - but most things work out just fine anyway.

    Max might choose next summer to go to the summer camp you just found for him *and* whatever inclusive camp you find between now and then. Most kids like to do both of two positive experiences.

    When my children were very young, a friend persuaded me to take them to a family camp for the weekend that was started by two men who were inspired by taking 'partially disabled' kids fishing. That is how the brochure described the children and those words have stuck with me ever since.

    It was an inclusive camp for families of children with special needs. So, children with disabilities were accommodated just like their mainstream siblings at regular camps, where all the campers have their own unique special needs anyway.

    I learned more about this when my son was in cub scouts than anywhere. His sister was in brownies and girl scouts and I grew up with all boy cousins, but nothing prepared me for how unique and wonderful every other boy happens to be like scout meetings, events and outings.

    Many, if not most, mainstream children know that they are not 'perfect' and worry that everyone else knows it, too. When our children are integrated into mainstream camps, classrooms, parks programs, Sunday school, scouts, little league or anywhere else, they find mainstream peers who recognize them as 'partially disabled' when they meet and as peers when they have spent time together.

    I believe it's about the same when children with disabilities grow up included from the start. So, it does not matter so much where our children learn to enjoy other people and have fun together. The most important thing is that they have access to the richness of experience that extracurricular activities provide.

    All of Max's current friends *are* typical, because they belong in the wide diversity of the community. There is not a separate life community for our kids and their mainstream peers. So it might seem as though moving toward inclusive settings could be a long trip, but in reality, all we have to do is include our children's mainstream peers and we have the community that works best for all of us.

    Even in a 'special' program they are meeting other children and sharing amazing experiences. Other children with disabilities are as valuable and unique as friends as mainstream children in regular settings.

    I love that you are excited about inclusive opportunities for Max - I have been 'all about inclusion' for my son for his whole life. But he also has friends who have disabilities, some who grew up like he did in the mainstream, and some who grew up in 'special' programs.

    A truly inclusive community should probably not mean that one child with a disability is the only one with a diagnosis in the group, even if all the other kids have their own 'typical' special needs. But inclusion is about everyone being counted in and supported, and it can happen in any group or program.

    Thinking it's time I went back to decaf - sorry for the ramble!

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  13. I wish you lived near me. There is an awesome camp near my house called "recreation unlimited". it is mostly for special needs kids, but they encourage typical sibs to go too. My 15 year old is about to go for his 3rd summer. He got sick one day last summer and I had to go pick him up--they deal with kids of EVERY level of care--including 1:1 care who need to be fed at lunch.

    Our local boy scout troops are awesome too. My son is in a "high adventure" troop, yet it also seems to be the one with the most SN kids in it too. There is a older boy with DS, at least 2-3 kids with various forms of autism, and several kids with undefined neuro issues ( they just aren't right...)

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  14. My daughter is mostly does activities with 'typical' peers (although once you get to know them, they always seem less typical!), just because most classes etc aren't geared towards special needs. She is usually the only kid with SN in the class (she was dx'd with severe autism at 2.5 yrs). She also attends a preschool (again, the only kid with SN in her kindy class). This summer she will be attending 2 camps - one with a large pop (30%) of SN kids, one where she may be the only one.
    I try to include her in more activities with kids with SN and am trying to create a circle of friends for her that includes both SN kids and TD kids. I want her to look around and see that people come in a variety of abilities etc. I truly hope that she can grow up without the strange idea that some people are "normal" and some are "not".
    My hope is that by having both typically developing friends and SN friends she will just see herself as human - just one of the group, with strengths and weaknesses like everyone else.

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  15. Kudos to you, Ellen, for keeping an open mind and heart about this. My daughter, Aria, also has CP (among several other diagnosis) and I long for her to experience inclusion in summer camps and extra-curricular activities. Our main challenge we have in our area is finding inclusive programs that will allow kids that are g-tube fed and/or still on diapers. I've yet to find a program in our area that is NOT exclusively for children with special needs that will accomidate kids that need this kind of care like my daughter. I'm constantly on the lookout and having my girl do what we can get her to do because the point for me is to have her do SOMETHING with kids...any kids...no matter their abilities. I agree with Katy, mother knows best! You are on the right track and doing great about it all. Take care!

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  16. Ellen, when I get time I look forward to reading the comments. I also need to think about this - good question.

    Paula Kluth (has website, books) is an outstanding resource on inclusion. You might want to check her out.

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  17. My favorite saying for these moments is "When we know better, we'll do better" So, in the meantime, what we're doing is perfect - as good as we know how. And it's so hard to learn more and challenge our own way of thinking. Right now I have that lingering thought inclusion vs... in the back of my brain but he's not even 3 yet! =) So I feel like what we're doing - with the heavily handed "special" stuff is perfect for now and one day - when I am ready - because it's not just about HIM but ME too - when WE'RE ready then it will work - it will feel right- and we'll give it a go. For a first camp I would gravitate towards a specialty camp for my son but he is more affected I believe than Max. And what I learn from that I will pass on to the people of the other camps if I attempt them. Just remember, you ARE doing the right thing - until you know to do something even better!

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  18. I know I had gotten quite comfortable with mainstreaming being on my son's IEP as a long term goal, but not something they were doing yet.

    Next year they are actually going to start including Max in a mainstream classroom setting, and I do have a little trepidation about that. But I realize spending time with 'typical' kids could do him good.

    I know a lot of people push for inclusion, and I wonder if I should have been doing so all along. I don't know.

    No advice here, I just wanted to tell you I think I know how you are feeling.

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  19. Lucien is 8 and has been mainstreamed since preschool. He has CP and uses a wheelchair. He is verbal, but his speech is often labored and you need to be patient and allow him time to speak. He is in 3rd grade and works at or above grade level. He's a smart cookie and has a great sense of humor. I have 4 other children and I want the same things for Lucien that I want for them. I want him to go to a good college, find something that he loves doing and make a living at it, get married and have a family... To want or expect less would be a disservice to him.
    I am all about inclusion. That said, I chose a mainstream preschool for Lucien because I didn't want him to only identify with other children with special needs. I chose an elementary school that supports inclusion and has other children with special needs attending because I didn't want him to feel like he was the only one with special needs.
    I encourage anyone who has or knows a child with special needs or basically anyone who lives on the planet to see the documentary entitled "Including Samuel". You can visit their website at includingsamuel.com. I had the opportunity to see it this spring. It made me laugh and cry. It also gave me faith that my goals for Lucien are attainable.

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  20. I am a total stalker on your blog and am pretty sure you are Jewish. I know many Jewish camps have inclusion programs. Here is the link: https://www.keshet.org/content/summer-camps-esy

    My children attend one of the mentioned over night camps. A friend of my daughter's who is blind attends the overnight camp (it's a boy...it's a coed camp). The other camp has even more special needs kids.
    I would have suggested it in my prior posts (Annie) but I thought maybe Max's medical needs were too intense for an integrated camp. But you should check it out.

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  21. I don't have a special needs child, but I just wanted to comment on the back of Jenny's statement. She said, "I realize spending time with 'typical' kids could do him good." "Typical" kids are done good too by interacting regularly with special needs kids, so it's definitely a beneficial two-way street. I'm in DC and while many schools attempt inclusion (typically more directed toward behavioral issues, though), my girls' elementary school has autism classes with certified teachers. I think my daughter was more excited than the autism teacher when one of the students spoke for the first time.

    I just found your blog, so I'm still catching up/reading, but I'm pretty sure from what I've read thus far that this light bulb/thud is going to pan out to be absolutely great for Max, your family, and the "typical" kids he encounters.

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  22. I think like many people it all has to be considered case by case, parent by parent. When to go off the grid and when to stay on the grid. Some of it depending on availability of services at the 'typical' option, some of it on the actual child, etc., etc.

    As guilty as I am of this, I think you judge yourself too harshly though, everything else aside. I think you HAVE to always think Special Needs first, no matter what. Why? Because you just DO. He has needs, those needs are special, and they have to be factored in to every equation, all the time, so that he always gets the best possible services that cater to his specific circumstances. Going off the grid every once in a while? Yeah that's a cool exception, but not the rule.

    Just my opinion obviously, but I think you can't beat yourself up for this one, know what I mean? :)

    You'll ultimately do what you always do...whatever is best for your son. Natch!

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  23. Crap on a stick, forgot to hit 'subscribe'...

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  24. I have included Olivia in many things and she has many "typical" friends and it is wonderful. It's a little nerve-wracking to send her to things that aren't "special needs" specific...but it's been nothing short of amazing!!!

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  25. Mine don't have "special" options nearby so they have always gone "regular".

    My eldest has gone from non-verbal mild PDD to mild, passing for normal NLD and it's in Gr 6. It has pushed him along, we've never discussed the autism, and he has no idea that he's any different. Being rural people are more understanding and as long as he can manage on his own... he went. We've been in Scouts since he was 6, library programs, swimming lessons, karate, weekend overnight camp.

    The younger Gr 4 requires support. So he's either gone with someone or to something that he can go alone. My friend hosts a kid's club at her church twice a month and he goes without us... her Dh actually is his "worker". He's been in regular and private swim lessons. Due to the noise privates are better.

    We've also done public and private daycare. Eldest has always been mainstreamed and the youngest is starting this year in self-contained.

    I'd start slow. Pick and choose activities he can do on his own and move them into mainstream... and go from there.

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  26. This conflict is pretty much my whole life with E. We're sending him this year to a program that runs within a mainstream camp, but I don't know how much interaction he'll get with the mainstream. I'll ask for it, but...

    My oldest daughter's camp directly integrates kids with just physical disabilities, and the ones with developmental ones come into mainstream every so often.

    There's a new fabulous program called Camp Kaylie that integrates "regular" and special needs kids completely. But their website says, "Children with high functioning developmental disabilities." It's something to watch, though, because this is the first full-scale year, and they might expand.

    Overall, I want my kid to get what he needs from each world. For sleep-away camp, I want him to start with tons of support and reduce it as time goes on and he doesn't need it. For day camp, I send mainstream with a shadow, because I can manage it from home when there are issues.

    The biggest problem is school. I'm always asking for more mainstreaming, but I don't always know when it's right or not. I do know that E. picks up a lot from being there, even if it looks like he's not doing well.

    Hugs. He will do great this summer, and if you send him away, that can be a stepping stone to a different situation next year if you want.And these camps will love your kids so much...I know one camp where, knowing Max's personal info,his counselors would greet him wearing purple hats and streamers.

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  27. I'm coming from the other side, everything we've done is mainstream, his current nursery school is integrated 50-50 with typical/additional needs kids, otherwise its been regular swim class and music classes since Seb was 5months old. Granted we lived in Egypt for his first two years, so there wasn't anything sense and I'm so glad. We have built wonderful relationships with people. Not only will Max benefit from inclusion but so will the kids he meets in that environment. I am pro-inclusion (when done property with proper support) and am afraid of sending Seb to a school just for kids with physical disabilities so he can get that extra therapy for a year. Sebastian is non-mobile and non-verbal but he belongs in the world wherever the possibilities are. And the world is full of possibilities. Good luck, you can do it!

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  28. Hi Ellen -- you may be interested in a blog I just wrote on this topic -- but one that might surprise some of your readers.

    http://bloom-parentingkidswithdisabilities.blogspot.com/2011/05/inclusion-or-else.html

    Cheers, Louise

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  29. We're somewhere in the middle, largely because my son's medical issues have meant that he frequently doesn't qualify for "special needs" activities, and most mainstream places don't really want us either - while he has been diagnosed with CP, it's so mild that no one notices his AFO...they notice his trach first and foremost, and get upset before they get any farther, convinced they cannot accomodate him.

    He's done an inclusive parent-child nursery school, regular gymboree (where they are content to let him ignore circle time until he's ready - it's been as good for him as PT), regular gymnastics (which didn't work so well because they wouldn't give him the run of the gym), and regular daycare/preschool, with his nurse (that took a lot of talking and arranging, and a lot of adjustments on their part, but he did so well there....other than getting sick all. the. time.)

    I think that there's comfort (and less work) in doing special needs specific things - you go into it knowing that people will be more willing to figure out what to do with your child, rather than you having to make all the arrangements yourself. But there are aslo benefits to going into more mainstream settings too. It's a balancing act, really.

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  30. Blogzilly said what I was thinking pretty much exactly. The only thing I will add is we are trying a day camp at the JCC in our area this summer. The inclusion coordinator there has been super supportive and will provide a shadow at no extra cost. I attended a summer recreation fair and found that there were more options for day and residential camps than I expected so you may look around in the next year and see what you think might work for next year. The JCC in our area seemed to have the best thing going for our son's needs. That being said, I am still nervous about it since it is a new experience.

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  31. Just to add a different perspective, and to allow you to stop beating yourself up for focusing primarily on special needs opportunities for Max ... The perspective of a parent is often different than the perspective of a child or teen with a disability. Parents think, "Yay, it's great for my kid to be out there in the mainstream, and I want to push for every possible opportunity for my son/daughter to be there!" On the other hand, if you talk to kids with disabilities, especially kids who are self-aware of their differences (and not all kids are) you will find that they sometimes PREFER to be with other kids like themselves. There is a certain comfort that kids with disabilities feel about being with kids that are like themselves. They can be themselves, and don't have to work harder to fit in and be like everyone else. They can talk about issues that they experience that kids without disabilities don't experience. It's a relief for them to let down their guard, and just be themselves.

    We all long for a place where we will be accepted and feel that we belong, and are loved for who we are. It's the reason we join social groups that have a religious or ethnic or [fill in the blank] component. We look for a commonality as a jumping off point. It is no different for people with disabilities. Although of course we want kids with disabilities to be a part of and accepted by the larger community, there is no denying that they also have a proud place in the disability community that also has a lot to offer.

    Paula

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  32. I think mainstream experiences can be great for kids with special needs. But I kind of hate the notion that being with other children with disabilities is necessarily bad for them. There is value in being with people who are farther along than you developmentally, and there is value in being able to be a leader and role model to someone who is not ... and there is value in just being comfortable at your own level some of the time. I worry that we may be so eager to put our kids in the magical company of typicals that we deny them those other experiences, and leave them without a place to really fit in.

    My kids are grown now, and my mistakes are made, but if I had it to do over again, I would have assembled a group with which to mainstream them into a summer program. I'd have talked to some moms in their special-ed classrooms and gotten a little group together, and with the money we saved by not using a pricey special-needs camp, we could hire a teacher or therapist who didn't have summer work, or a college student studying special ed, and had them serve as a para to help with the mainstreaming. The kids would have been able to form friendships of all types, and exist in a range of abilities rather than always being That Special Kid.

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  33. I don't know about camps (they aren't nearly as popular over here in Austria), but I know that my brother made huge developmental leaps when he went to a "regular" school because he wanted to keep up with the other kids. I was still just a kid myself then, but I'm pretty sure that he learned more in four years of regular primary school than he did in... what? ... eight years (?) of special ed.
    And if Max ends up being the first kid with special needs somewhere, I have my fingers crossed for all of you that it'll go as well as it did with my brother at preschool - he was the first one there, and although I don't remember it well (I was only about five myself), I'm sure it took quite a bit of convincing. This was nearly twenty years ago, so inclusive preschools (or schools, for that matter*) were still quite unusual.
    But that particular preschool has been inclusive since then. I'm still proud of my little brother for being the first.

    *took a bit of cheating part to get me into a school that did have inclusive classes - I "officially" lived with my dad's boss in a different school district.

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  34. I've been thinking about this topic of inclusion a lot lately too. He's still very young, but my son is transitioning from the Infant room to the Toddler room at his daycare. He has CP and is the only kid with such a physical disability in this small daycare. They've been very willing to accomodate (with his wheelchair, help feeding, his AFOs, his therapist visits, etc), but I struggle, wondering if he's really getting all the one-on-one time he probably needs - and how much they really are willing to do. We're pulling him out for the summer to try out more of a nanny/babysitter situation. But then I see how all the kids at his daycare treat him basically like any other kid, and I wonder if I'm doing a disservice? He LOVES his babysitter (she used to work at the daycare and really clicked with him) but I just hope he doesn't miss out by not having the social interaction with all the typical kids.
    I second the earlier comment about "Including Samuel" - I bought the cd about a year ago when my son was first diagnosed, and I was searching for anything I could find. It was extremely enlightening - explores inclusion from all different sides. It definitely made both my husband and I cry like babies but smile at the same time.
    I think you're doing the right thing - try out the special needs camp this year and see what you can find out about other camps for next year. Everything is worth a try - if one of them doesn't really work, you'll know it.

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  35. Inculsion all the way i am hopeing to catch u on a fb chat soon again :)

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  36. Great post, Ellen! I have to say that one of the only regrets I have after raising a daughter with severe special needs for more than sixteen years is that I didn't push for inclusion from the beginning. It gets harder and harder to do so as the years go by.

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  37. My little guy doesn't have quite the same challenges as Max, but he has some major motor planning issues, and is severely speech delayed (as in, Thank goodness he can use the iPad to tell me when he has to pee). He does special needs preschool right now, but next year he'll be in an integrated pre-k class with typical kids, and he does swim lessons at the YMCA - he started in February, and can now dog paddle! It's hard to find the balance, I agree, but I really try, because I've found that the non-special needs activites have higher expecations, and he almost always is able to rise to the challenge.

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  38. Ellen,
    another thoughtful post that shows how we are always learning and trying new things. my thoughts are to start small - like a neighborhood type of activity w. inclusion or a religious activity w. inclusion or even an after school care inclusion one time per week. then you can see what sort of things Max would be interested in. One thing we did was use the after school sports teams at our local elementary school - it was non competitive and included a range of age groups. but we also did Special Olympics (started with his very first team here) then moved on to non competitive sports teams usually w. a variety of ages - my son would not be on the same level physically as his peers. we still balance both - special needs things and non, but by starting out small, you learn different things and see what sort of activity/coach works and what doesn't. we are still learning. another thing is to be involved. I attend the typical sleepover camp as an assistant for the entire group he's with, so I can make sure things go smoothly. Maybe next year I'll feel OK for him to go on his own. That's how we did it. It is a gradual thing that goes w. your comfort level and ability to fit things in. You'll find a camp that both Max and Sabrina can go to. I know it. I found it sometimes difficult though to fit more in when there were so many therapies to take my son to. As the therapies diminished or we cut them, it opened up more time for these things - and they were in themselves forms of PT/OT and speech.
    you rock ellen!!!!
    kct

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  39. april corvin from starlight starbrightMay 20, 2011 at 7:11 PM

    We run a special needs cub scout program here is saugerties Ny and our special needs scouts are inculded in the typical scout pack. and they do go to scout camp and make the pine wood derby cars!

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  40. I'm so happy to read this post from you. I've been wondering when this would come:-) Max is so lucky to have a mom who is so open to new experiences even if it's scary. I actually have a friend who just signs her son up from t-ball and such and doesn't even give them a chance to say no. After all, it's their right. If they say they can't be on the team, it's discrimination.

    I don't fault the "special" organizations, but sometimes they do more to divide our kids than help them. There's definitely a place for them, and some families love them. But for us, we're taking the inclusive route...for now:-)

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  41. My daughter is 5. She is multiply disabled and requires many services in her regular ed classroom. Most of them push in to the classroom. She is receiving summer services at her regular camps this summer or at home. She only sometimes has contact with others with significant disabilities. We talk about it and plan trips to places where she will have that exposure. The majority of people she will come in contact with in life will not use a wheelchair. She has to be used to socializing with them. The time to start building life-long friendships is when she is little. She has a best friend in school who comes over to play and she has several other friends, too. And this is a kid who is non-verbal, uses a wheelchair and has a trach! Kids like kids no matter what! If inclusion can be left up to the kids, it will work.

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  42. I was too lazy to read the (41!) previous comments, so hopefully I'm not just repeating similar stuff to everyone else.

    Camp possibilities as you describe definitely exist if you look for them. I was involved years ago with a Christian camp in Canada. Camp counselors could have a cabin or be matched one-to-one with someone with special needs at the regular girls' or boys' camps. I suspect they stayed in a cabin with all the rest and were included according to their own abilities with the help of their buddy. Probably a good experience for all involved: kids and leaders.

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  43. Our world has been opposite. Zoe has been the only kid in a walker and wheelchair,throughout our social circle.. neighborhood, church , school, and recently she began holding back a bit, holding herself to the expectation that she had to do things " just like everyone else." I wrote about the realization here..

    http://www.5minutesforspecialneeds.com/7746/her-way-one-half-turn-at-time/

    My reaction was fast and furious- and I felt it necessary to expose her to kids with disabilities- doing everyday things, sports, dance etc. It's a balancing act we can never perfect, yet it is good to always push..

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  44. It depends on the kid, 100%. And the program. You want some place where Max will thrive, and those mainstream staff need to be able to step it up and ensure that he is thriving and is included.

    Love the idea of inclusive activites, although the liberal chick in me can't abide the idea of boy scouts. My mom yanked my brother after she found out about their gay ban.

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  45. Oh, and I have to say, I think it is SO important for NT kids to be with kids with disabilties. My AYSO team is kids with and without special needs and I loooooooooove it. I think it is SO important for people to get to know children with special needs. It alters the way you move about the world. It changes your vocabulary (goodbye r word), and it teaches children to love children who are different frm them.

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  46. Typical camps will probably claim that they will need to get more insurance for Max, so be prepared!

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  47. I know this isn't the question you were asking, but I went to an inclusive preschool and elementary school so inclusion was completely a fact of life for me growing up. I also went to a day/overnight camp that did inclusion really well. If you got in touch with them they may be able to give you ideas of camps closer to home or names of parents you could talk to. http://www.campfireusacny.org/talooli/TalooliHome.asp

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  48. My son has quite a lot of physical difficulties and is medically complex, but I go out of my way to get him mixing with mainstream children. Not only is it a great way of educating children that SN kids aren't scary, but Dominic will have to exist in a world that doesn't necessarily make allowances, and I want to prepare him for that

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  49. It turns out that out special recreation association will provide an aide if your special needs child wants to be in a regular park district activity. So for the summer I have my child enrolled in gymnastics and also a week long sports camp.

    There is also a very good dance school in our town and I approached them a few months ago about putting my daughter in their classes and if they would be OK with me sending my sitter. Their response was, no sitter needed, we have been integrating children with physical and cognitive disabilities for 20 years.

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  50. My Hannah is much less impaired by her CP than many kids are. Although she didn't walk until 20 months, she does walk, and she runs and jumps. One of our therpists suggested dance - with a possible enrollment in dancers with disabilities for just $10, while regular toddler classes cost $250. Schedule wise the other wouldn't work anyway, but I wanted H learning from typically developing peers, so we signed up for the regular class and it has been wonderful. H moves more slowly than others, and doesn't corner well so if she gets hit by a bigger kid going fast she gets knocked down. Only half those kids were toliet trained so we didn't stand out there, and enough other kids had behavioral issues that H just came across as really compliant and smart and having a great time. I don't know if this will work as well on faster moving activities, such as soccer, but we certainly plan to try.

    If I were you, and Max went to a sleepaway camp, I'd worry most about what the other kids might be like when the counselor isn't looking. This stuff terrifies me now even though we've never experienced it. Many people can't tell H has issues at all unless they spend a bit of time with her, but I don't know what will happen later on, if the drooling keeps going, or she has very obvious braces, and so on. I hope some of you with more experience will tell us good stuff . . . this part scares me witless.

    Thanks as always for an insightful post. I love this cooperative learning we've got going here.

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  51. I'm gonna be the contrarian, here, (AGAIN!!!!) and ask the question: What is "normal?" To me, what's "normal" is an environment where your kid is 1. SAFE, 2. Happy, 3. Acknowledged and 4. Accomodated.

    I would not trust a "regular" camp with the high school and college "counsellors" to have the tools to deal with my oldest-- or Max. I just don't think they have the skillset. Besides, most of those camps are more interested in profit than anything else. I won't even raise the "PERV!!" alert again! Music classes and assemblies at school and sports day are one thing, but trusting a kid barely out of high school to supervise/medicate/care for/be aware of my kid's needs, is a horse of a different color. My youngest, even with his clipped wing, can tell you what he likes/wants, doesn't like/want, and can scream like hell if there are any issues. My oldest doesn't have that ability to articlate and could easily become a victim of foul-minded counsellors or campers. Not that I'd do the "camp" thing anyway (so you can discount my remarks entirely if you'd like!!!).

    We go camping all right, every year, by a lake, in tents and a pop-up, and the kids get fishing and nature lessons from grampa....and that's fine with me and them. If they ever want to invite a little friend, that's fine with me too!

    To sum up--it's really not about what I want or think--it's what's best for my kids. I don't really care about inclusion to the point where I feel like I'm depriving my oldest if he isn't shoved into a scenario where he'll be last/slowest/unable to grasp the concept--but "included" with the "normal" kids; they get enough of that crap day-to-day when they're at school and out-and-about. If they are happy, I am happy. If their lives are busy and filled, who am I to be the one to force them to participate in activities where they might be severely disadvantaged and singled out because of it?

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  52. GingerB, I think your point about "what will the other kids do when the counselors aren't looking?" is something to consider. It is all well and good for a parent to say, "My kid has a right to be here, so I'll just sign him/her up, and they'll just have to deal with it!" But that's your kid you're putting on the front lines, and if you want this activity to be a positive experience for your kid, it takes leadership from the staff and cooperation on all sides. We all know that kids can be cruel and that bullying is a problem everywhere, and the staff needs to be educated about your child's needs and how best to meet them in the group, about how to head off potential problems, etc. If the staff feels ill-prepared or fearful, your child may be resented rather than welcomed.

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  53. Hi Ellen, First, I don't think that your approach is wrong. We SN parents make each decision with our child's best interest in mind. Even if the pattern of decisions reveals a particular philosophy, the child --and not the philosophy -- continues driving our decisions. Maybe that means trying a different path for a particular decision, and maybe not. My son is fully mainstreamed, and I often question whether he'd be better off having more experiences where he is not "the only one" with a physical disability.

    Second, on your particular question: we're trying a non-SN sleepaway this year! A traditional hiking-centric camp in the mountains (never mind a sports camp) would be a nightmare for my son, but we found a non-competitive arts and music camp that we are excited about. They are emphasize diversity and respect for differences. A very many of the campers are "quirky" (diagnosable or not) in ways that lead the camp to create a culture of acceptance, and to offer lots of support to the kids. The sports offerings are all optional and include yoga and gardening. And, the staff-camper ratio is 2-1. He won't be going until later in the summer, but we can report back!

    Good luck with the decision! Some days I am more worried about how *I* will cope with my son being away than I am about how he will cope!

    Lisa

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  54. This was such a great post! I subscribe to your RSS feed and read every blog post. This entry prompted me to write my first comment because it is exactly what I am looking at in grad school.

    My undergrad degree is in special ed, my masters thesis focused on youth programs, and for my doctoral dissertation I am studying high school extracurricular activity participation by students with disabilities.

    As a researcher, I'm very interested in perceptions of disability, which you often address in your blog, and also family interactions and how those interactions shape actions. The comments here today are exactly what I am hoping to learn as I survey youth and program leaders, and interview youth and parents!

    Just wanted to say that I really appreciate your blog, and I often share it with my friends who have children with disabilities.

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  55. I say go for it! One thing that for some reason or another even though he has a diagnosis I try and treat him as much like a normal 4 year old as possible. Right now the only thing Alvin does that is SN is preschool. He is in a mainstream gymnastics class and has learned a lot not only about gymnastics but also about how to interact with the other normal kids.

    Even if its just for a couple of days it will be a challenge for him. He just might surprise you in how well he could do!

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  56. Ellen PLEASE PLEASE PLEASE send Max ro a camp with typical kids my mom never let me go anywhere without her - aside from the two years I was in boarding school - and it really made me aware of the fact that I was differnt and trust me when I say that you DO NOT want that for Max.

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  57. My best friend in primary school has severe CP. And by severe, I mean can't walk (at all), can't talk (he says about 3 words that you have to know him well to be able to understand)... he needs assistance for everything.
    Even though he can't speak, he always laughed at my stupid jokes, we held great conversations as long as I made everything yes/no questions. I got to know him quite well.

    However, he is now in his early twenties. I call to arrange a catchup, and his parents don't bother to get back to me. He attends a day program for disabled adults. I would love to spend time with him and catch up with him, but his parents don't make the time. And he can't exactly pick up the phone and call me whenever he wants to.
    I'm sure that his parents don't isolate him on purpose - it probably just doesn't occur to them that there's someone who enjoys his company and wants to spend time with him without them always being there!

    Special needs people definitely need to spend time with typical people. I miss my friend. And the older he gets, the harder it seems to be to see him.

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  58. Agree absolutely with Jenna. The mix is very important for my son and he definitely has benefited from it.
    But I do understand that it is the parents' decision when and how much this happens. We are on the cusp of deciding to put Ashley into a Special School After 3 and a bit years in mainstream.

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  59. My daughter does regular ballet and it has been wonderful! She has physical disablitites, hearing impaired, developmental delayed. She started ballet actually using a walker but loved it. I observe from the outside room with monitors and if she needs a pull up change they bring her to me, but other then that the teacher is wonderful with her and helps her adjust to her needs, she does now walk but has a hard time bending, jumping and a few other things. But it has been wonderful. She also goes to regular Sunday school and never seems to have issues. She use to have a buddy teacher who was her friend but now she does not need it as much.

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  60. I would TOTALLY get Max in Boy Scouts.I was in Girl Scouts for 7 years. Scouting is 1 of the most accepting groups therefore making it a good inclusnariy program.Besides It would take some weight off your shouldors and put it on Daves!

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  61. I'm slightly speech delayed and love acting.

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Thanks for sharing!