Friday, May 1, 2009

Fog of Disbelief

Yesterday I visited Oscar's 2nd grade class and read a "book" I wrote about him and Prader-Willi syndrome. I write a new version each year and always include lots (and never enough) pictures of him having fun with his school friends. His wonderful teachers allotted a whole hour for the book and discussion, which really allowed us to delve deeply into the topic of Oscar, his challenges and how to support him as a friend. Oscar was not there -- we arranged for him to be with the learning specialist so the kids could speak freely.

The kids expressed such care, concern and compassion. Their questions were sweet and thoughtful. In the book I aimed to touch on things that distinguish Oscar from a typical kid. I wanted to validate their every observation and help them understand the challenges PWS presents. I was fully prepared for lots of additional observations -- things his brother points out all the time -- like "he chews with his mouth open", "he talks to himself", "his stuttering is really annoying", "he forgets to flush", "he can't run fast", "why does he get to take breaks and do less work". Nope. None of that.

These kids wanted to talk about whether Oscar was okay with me talking about him without him present. They wanted to know whether he'd like more play dates, and if he'd prefer to play "crazy chimpanzees" or "mad monkeys", games they made up because they knew the name alone would be appealing to him. They talked about ways to include him in games, even when it seemed like he wanted to play alone. His aide, his amazing aide, led this part of the discussion, allowing the kids to present their ideas and validating them, and also stretching their concept of inclusion to mean more than not excluding.

We talked about how Oscar knows he has PWS, but that we always focus on the positive. We don't say "You can't" but instead try to say "You can..." so he feels good about who he is and what he can do. One child chimed in and said, "I get it, you always put him on the bright side".

They did get it, on a very deep, and mature level. I knew, I really did, that this was a wonderful and supportive group of peers.

I knew, and yet I am still in a fog of disbelief.

Words are failing me. I cannot adequately describe how beautiful and incredible the experience was for me. I spent the remainder of the afternoon shaky and on the verge of tears. Tears of utter joy but, also, unsettling sadness. It took me a while to figure out why: It just can't get any better than this. I just can't imagine how it could.


  1. Amy StarkweatherMay 1, 2009 at 9:37 PM

    Wonderful Mary! I am touched so often by Ethan's classmates, therapists, teachers, etc! So many people helping him along the way. There's definitely something special about our boys! Give your kiddos hugs from me!

  2. You're such a wonderful mother, Mary. Can I come be in that class?

  3. Thank you for posting this. When I worried about cruelty "on the playground," David told me that kids are much nicer now than they were when we were in school. Your experience proves it; even more than simply being "nicer," they are being encouraged to grow in understanding and compassion, aided by people like you and your son. By being REAL, being open, and appealing to that spark of goodness in them, you are all blessed. This is a gift!

  4. Amazing and inspiring Mary. Thank you for sharing.

  5. This is a wonderful upbeat post about the way things are SUPPOSED to work

    "and also stretching their concept of inclusion to mean more than not excluding." Yes! 7 year olds get this, why not adults?

    The book is a fantastic idea!

  6. That is beautiful. Kids can be so awesome!