Tuesday, August 31, 2010

My kind of people: An amazing weekend with special needs families

We don't often hang out with other families who have kids with disabilities. Occasionally, yes, like at a birthday party for kids in Max's class or when we arrange a playdate with one of them. Otherwise, on weekends we're with friends (only a couple of whom have kids with disabilities) or family or running around like maniacs doing errands or activities. It's not that Dave and I don't like being around other families like ours, it's just that we've never gone out of the way to forge the friendships.

I forget how heartening, comforting and life-changing it is to be around people who have kids with special needs—people who totally get it. Last weekend, I got the most amazing reminder.

First we visited Stockbridge, Massachusetts, a beautiful, quintessential New England town.

Max and Sabrina chose to tour the village by PlasmaCar. (I know, wouldn't it be great if they made them for adults?) Then we went to dinner at The Dakota in Pittsfield, a place my parents took me to as a teen. Max did not want to be there, and he made that known. As in, he screeched when we were seated. An elderly guy and his wife sitting at a nearby table glared at Max. "I don't want that kid near us!" I overheard him say to the waiter. I turned on my heels. "He has special needs," I said, caught in that weird place between I am ticked off/I am really upset you just said that. "Oh," the guy responded. Max eventually calmed down, but I was unnerved.

The following morning, Max screeched in the quaint dining room at our quaint hotel, The Red Lion Inn, because he wanted room service (I blame the Disney Cruise!) and again, people glared. Then we went to The Norman Rockwell Museum. As charming as the paintings were, it occurred to me that the artist had only painted typical families and typical kids doing their typical-life things. No kids with special needs in those paintings, no kid with sensory overload screeching his head off in the middle of a quaint restaurant, nuh-uh.

And then, we were off to three days at Camp Pontiac sponsored by The Starlight Children's Foundation. The brothers who own the camp, Rick and Ken, have generously hosted dozens of families for the past three years. This was our first time there and wow, did it feel like home.

The camp was exceptionally good-looking, inside and out. Somehow, we ended up with an entire bunk to ourselves.

Not too shabby, eh?

The staffers and volunteers were beyond nice and accommodating. Once they realized that Max was obsessed with rides on golf carts—I mean, the kid would have happily slept in one if we'd let him—they gave him ride after ride after ride.

When he'd been on a cart for too long and other kids wanted a turn, I'd drag Max off and he would immediately trot over to another cart and smile at the driver, charmer that he is.

On Saturday afternoon he rode around in a cart for a good two hours.

We all enjoyed the Saturday evening barbecue on a golf cart. I am really glad Max didn't insist on bringing one home, because it wouldn't have fit in the minivan and it would have been grand larceny, to boot. Also, it wouldn't have fit in his room.

Happily, we did manage to pull Max off the golf cart for other activities. He painted a window pendant (in "ur-ul"—purple—of course)...

...and then he painted a few more.

Sabrina made one, too.

Max took a motorcycle ride...

...and played Skee-Ball with Sabrina.

He tried his hand at hockey, which I only discovered when Keith, his golf cart chauffeur of choice, found me and said, "Max got off at the hockey rink." It was a wondrous sight.

He lined up to shoot hoops with the big boys.

And did I mention he liked the golf carts?

Max opted out of the bonfire, swimming and movie night, though he was all for the ice-cream party afterward.

Not Max! Sabrina was also too chicken to zip-line. That makes three of us, four if you count Dave. Maybe next year; perhaps I could get them to hook a golf cart up there? Max also chose not to be in the big group photo. He screeched and wailed and let me tell you, nobody glared.

There were so many cute kids everywhere, kids who wanted to chat or ask questions about Max or, once, just sit quietly beside me and hold my arm. "Where is your sister?" asked one little boy, referring to Sabrina and thrilling me (could it be my new moisturizer?). I loved seeing siblings helping each other out. There was one teen with cerebral palsy whose brother was by his side for most of the weekend. It gave me a hopeful glimpse into Max and Sabrina's future, assuming those two don't kill each other.

Thanks to Max's busy golf-cart schedule, Dave and I had time to relax on benches outside of the canteen and hang with other parents. Within minutes of meeting, we were sharing stories about what happened to our kids. We had a long, cathartic discussion with another couple about doctors who had predicted the worst about our children. Dave had a nice talk with one father, who had sole custody of his six-year-old daughter, about encouraging our kids to talk. People also shared their experiences with other good-deed groups. If you have an ailing child who needs a plane ride to medical appointments, check out Angel Ride, a free service run by volunteer pilots. And if you know of a child with cancer or another life-threatening illness, tell their parents about Camp Sunshine.

Two days later, I'm still on a high from that weekend. Eternal thanks to Rick, Ken, the Camp Pontiac staff and volunteers, The Starlight Foundation, all of the great families we met and whoever invented golf carts. The sunshine felt good on my face, the kids' glee made me happy, the toasted marshmallows were yummy but just being around all those parents and families gave me comfort and contentment I don't often feel.


  1. Wow, sounds like you all had a fantastic time!

    I can't believe how big Max is looking now. Is it possible he's growing up that fast?

    You need to tie a brick to the top of that kid's head or before you know it, he'll be driving that golf cart all by himself!


  2. awesome, awesome, awesome.

    Awesome that there's places like that out there. Awesome that you guys had such a great time. Awesome that Max looks like such a big kid in that picture in the cabin. All around just awesome.

    Thanks for posting and brightening my birthday!

  3. That is AWESOME. I am so glad you guys got to go and that there are camps like these around. I read a novel once about a camp for children with issues pertaining to light sensitivity... Can't remember what it was called but it sounds as though you had an experience just like the protagonist (except she had an affair there. Heh. Little different.)


  4. that brightened my day as well - and Max's sweet face too!
    thank you!

  5. It is SO awesome to be around families just like you!!

  6. I LOVE THIS POST! I love everything about it! My in-laws live in NH; maybe we'll plan a vacation in Massachusetts! That camp sounds amazing!

    And, for the record...last year we went to the beach, with a bunch of family. The house was a ways off the beach, and we got there by golf cart. E LOVED IT. Golf cart=WIN.

  7. Awww It sounds like Max had a lot of fun! :)

  8. Thanks for sharing :-)

    How did you find out about the camp? How could I go about finding such a thing in Missouri?

  9. Janet, Starlight has a foundation in Missouri, here's the site: http://www.starlight.org/missouri/

    Not sure they have a camp there, though. Google
    "Camps for kids with special needs Missouri" and "Special needs camps Missouri" and "Respite Camps Missouri" and see what you get.

    Everyone else: Here's a link I just found to camps for kids with special needs around the country. http://wmoore.net/therapy.html

  10. Oh, and PS, Jess: Yes, Max really shot up this summer. That's him, not his body double, in the photos! :)

  11. That sounds like fun times for sure! I have been to the Norman Rockwell Muesam too.

  12. I definitely need to find someplace like that close to here.

    As for Rockwell, (I have to defend any fellow artist you know...it's the LAW) he came to prominence in a time (essentially the 40's when he started having any real success) when kids like ours would have been institutionalized more often than not. There's a chance Rockwell never even saw a kid with Special Needs.

    What I wonder is about today's art world, and who is doing work on the subject? I'm gonna have to research.

  13. Wow the kids look so happy in the photos :) Our club for families with special needs organises weekends away and it's the highlight of the year for many. It's just that everyone 'gets it'.

  14. WOW. That looks amazing! Definitely doing a google search for something for our family. So, so, so cool!

  15. That looks amazing! We're an hour away from Pittsfield (in CT) so maybe we should look into it. My daughter loves golf cart rides too!

  16. I am no Norman Rockwell, but I paint pictures of children/people with disabilities.
    Also, when we were in Florida on Vacation Hailey also loooooved the golf cart. We were amazed that she could pick our cart out of a parking lot full of them. WoW!

  17. I loved this post. Because I could relate to all the incidents dealing with people who don't understand leading up to camp, and then how life-changing the camp was because of the contrast.

    Also -- I'm so aware of how our kids are never portrayed in photos in magazines -- let alone paintings!

    And I LOVE the pic of Max sitting on one counselor's knee and there's another counselor and I think Sabrina? - And he's got his hand on that steering wheel and the other hand appears to be directing. He's definitely leading the operation.

    What a fabulous place for families like ours.

    And I took a quick look at your post about school -- I know Sabrina will be a champ.

    What are you doing for the first day back to school? Anything special??? :)

  18. As you are with golf karts so we are with Go-karts.

  19. So cool!
    One of the reasons there aren't any special needs' kids in the paintings is because none of them survived birth...probably.
    Old people can be such *^$@heads. You know even though Max didn't care about what was said, you did, and I'm sorry for that! I have an idea of how that feels.

    Anyway, what a great time it must have been for everyone!

  20. Fantastic. So happy you had that wonderful weekend and reassuring experience. Love the photos. Going to check all those links now.

  21. Beautiful camp, you obviously had a blast! How wonderful!

    I am with Blogzilly about Norman Rockwell who is one of my favorite illustrator-artists. He did a great painting depicting a laborer in a wheelchair called The Paycheck, this was sixty years ago when people didn't want to see people in wheelchairs:


    And of course, he did a schmaltzy picture of Tiny Tim for the SATEVEPOST Xmas edition which probably doesnt really count: http://www.best-norman-rockwell-art.com/1934-tiny-tim-and-bob-cratchit.html

    And a disabled veteran for WW2:

    Rockwell's stuff wasn't always cutesy--when he took on an issue, like racism, or a dead husband from the war, you could really feel the anguish coming off the picture and that's why he's one of my favorites, even though some people say his works are exaggerated. I think he did some pieces dealing with polio too. I used to have a book with illustrations of his stuff, I had to hock it when times were tough. Wish I had it again because I think there were more representative images in it. The fact that he did any "thoughtful" stuff at all is a credit to him because he made his living as an illustrator and did all sorts of pictures for stuff like cereal and vacuum cleaners and things like that. The Sat Eve Post covers are some of his most famous images but they didn't pay the rent every month.

    Sorry, I am babbling! Like I do at times! I just really like Rockwell, though!

  22. I love Starlight

    I love Camp Pontiac

    It is so great to be with other parents that get it

    Thanks for sharing

  23. As a mommy blogger and a mother of a Pontiac camper, I am so happy that you enjoyed your weekend in this beautiful camp!

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