Saturday, January 14, 2012

Another Conversation with Oscar about PWS

Every few months Oscar and I seem to find ourselves in one of those conversations about Prader-Willi syndrome and how it affects his life.  I've largely protected him from the scary information and try to frame any limitations he might encounter in terms of what he can do, not what he cannot. 

This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer.  I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.  

Oscar's heard all about circus camp from our babysitters who are counselors there.  They've told him about the friendships and the art projects and the circus activities and the big show.  But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.

I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground. 

I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.

I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.

With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".

(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.) 

And then I answered his question.

"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe.  Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."

He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night.  "I wouldn't need a lot, Mom, I swear."

He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there.  And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.

I'd like to say this conversation ended elegantly but it didn't.  When I finally stopped talking sadness overwhelmed him again and the tears flowed harder.  So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears.  And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)

We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers.  He will have more questions. There will be more tears.

I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers.  I will insist.


  1. This makes my heart hurt...but then, I feel grateful for your tireless tenderness and understanding of the difficulties that he faces. You are such a good and loving woman, Mary.

  2. that boy is warm and kind, just like his mamma... thanks for sharing this with us..(and really well written)

  3. i went through a similar phrase as i was growing up with CP but now i know about it and educate others hints the reason i blog he will get through it

  4. Ugh. Why, why does everything have to be so hard? You are such a good and patient mother, Mary. I can imagine that your boy will have nothing but the best experience at this camp and will wish it so!

  5. Hello,
    I know it seems quite a dumb question, but did you think about an aid at the Circus Camp ? An aid who stays all the time with Oscar during the cam time ?

    The aid can also remind the staff that Oscar has to be on a low fat low cal diet, so can't eat sweets at all, and needs someone to be and stay safe ?
    Maybe the PWSA can help you in organizing this idea : like that, you kill two birds with one stone.

    Maybe a circus camp but for people with PWS ?
    Or maybe a daytime camp about circus, with an aid for Oscar ?

    I'm sure that we can find a solution which satisfies both, your son for circus camp and his needs because of PWS.

  6. Thanks all - a couple of days later I mentioned the PWS camp again and he said "Oh yeah, that sounds like fun." His interest in circus camp seems to only be about the ice cream.

    Giulia - thanks for the ideas! I do send Oscar to zoo camp with an aide which works great. I am happy to do that when the camp is a good fit but would be nervous about this circus camp since it is three hours from home with a staff unfamiliar with PWS. But I think I'll maybe add an art or clay camp in town this summer.

  7. Mary, the staff will probably be unfamiliar with PWS, ok. But did the zoo camp was more familiar with PWS ? I don't think so.

    And if it worked great with the aid at the zoo camp, why shouldn't work great at the camp circus ?

    What you can do is making a portfolio (you will find how to do it on and you give it to the staff.
    You can also add "5 things camp staff must know" or something like that. Like "I must be monitored for food" or "If I am having a meltdown, the aid will be there to manage them"....
    It will add not only photos etc etc... but also tips on how to manage with meltdowns, the behavioral contracts....

    Why wouldn't you approach the circus camp staff to know if they are ready to welcome Oscar ?
    Instead of wondering if or if not, but without never knowing the answer, go and have a look :-)
    At worse, it will only tell that the staff is not ready, and you won't have any regrets. And you can be confident about "the circus camp is not a safe option for you".
    At best, the staff will be happy and will do everything for Oscar to be safe and enjoy himself. It can also be good for the other campers.