Not quite rock stars…

Today was the day. Duhdee and I went to a nearby middle school to talk to a group of 8th graders. All of these kids had decided they wanted to learn more about people with disabilities, they wanted to learn how to be more open and inclusive. The fact that they wanted to be there was a huge comfort to us, knowing you have a receptive audience is always nice.

Last night, because I am a procrastinator of epic proportions, I prepared a PowerPoint presentation. Even though Duhdee is the geekier of the two, I have a little bit of geek-cred. I totally rock PowerPoint. Of course, some of this has to do with the fact that I am required to do presentations professionally and he’s spent most of the last 10 years sequestered at his desk coding…other stuff…stuff that makes me look like a kindergeek. Let me have this moment though, OK?

So, I put together a slamming PowerPoint presentation and then asked Duhdee what he thought…and then chewed off his head for actually having the nerve to offer suggestions. Seriously, just nod and say “Awesome job, honey!” He’ll never learn. No he won’t. And neither will I, apparently, since I still keep asking. This morning, when I was getting ready to go, I realized I should add a couple slides…perhaps they were the same slides Duhdee brought up the night before. Perhaps.

So I sat down 20 minutes before we had to leave and cranked out two more slides. Then I added animation. Then I added a few more lines. Finally, with Duhdee standing over me with keys in hand, I called it good enough. I spent the entire 30 minute trip tweaking and reading and thinking. And feeling sick to my stomach.

Just before we walked through the door of the school I posted a Facebook status saying “Money ((Not my real name.)) will not throw up!” And because I have the most awesome friends ever, I got a bunch of sympathetic responses and suggestions on ways to deal with an upset tummy ((But I did not know this until I left the building because I turned my phone off. Really!)). Oops. Then the strangest thing happened. As soon as the school secretary told us to take a seat on the bench, my nerves calmed down and I was totally fine. I told Duhdee afterwards that I realized there was no turning back at that point so I just had to do it. And I did. WE did! It was awesome too!

The kids were terrific, they and the teachers asked great questions. We talked a little bit about the “sciency” stuff but that wasn’t the main point. I wanted to give them a picture of what OUR lives were like living with a child with FXS and, even more importantly, we wanted to give them a picture of what MONKEY’S life is like coping with FXS. We talked about general effects of FXS…learning problems, behavior problems, sensory issues, hyperarousal…then I turned it around. Here were all these kids, what did I want them to know about this? What did I want them to know about kids with learning differences or other disabilities? That stuff is important to talk about because it answers a lot of the “whys” kids have…but it’s not what I want them to know.

So we talked about some of the positives of having Monkey in our lives. We talked about how HAPPY he is, what a terrific sense of humor he has, his amazing sense of direction ((The boy can give you directions to the Thomas P. “Tip” O’Neill Jr. Tunnel from anywhere in the greater Boston area! And will, in fact, do so…so never trust his directions unless you want to see the Big Dig!)). They were smiling and laughing, and how can you not when hearing adorable Monkey stories?

Then, we gave them a taste of FXS. We used Tracy & Mouse’s “Hyperarousal Experience.” After we finished the activity the 1’s (the kid’s who’d just stood and experienced this sensory overload) shared what it felt like ((And asked if we could switch roles, they really wanted to exact some revenge!)). One of the teachers who happened to be a 1 ((Totally part of my evil plan, I WANTED the teacher especially to experience it.)) told us she felt angry. Bingo! Total teaching moment…it’s NICE to teach the teachers 😉

We wrapped up by giving them concrete ways THEY can help. We encouraged them to reach out, to make the effort to initiate conversations and include kids who might not be able to do it for themselves. Then we plugged a few organizations…and since we’re such big fans of them…I’m going to do it again.

Anyway, that was that. We thought we might need 30 minutes and asked for 45 minutes to be safe…then we took an hour. The teacher said they want to continue this group next year as well with the rising 8th graders and we left our card. I think we just might go back. Not to shabby for a couple of procrastinating first-timers!