This year, I took Alice with me to the MDSC annual conference in Worcester. Alice hasn’t been since she was an infant because the conference doesn’t really cater to younger kids, and that’s OK. This is the first year that Alice was eligible to attend the teens and adults track and since I think that the MDSC will be playing a larger role in her life in the future, I wanted to get her involved in the conferences as much as possible.
My biggest issue, I think, was that I didn’t know what to expect for her nor did I know how to fully prepare her for being with a room full of strangers. Multiple times before we left and before we arrived, I spoke to her in broad terms of what to expect for the day. I knew, even as I was speaking with her, that this was not going to be enough. Maybe I can work with the MDSC to help improve the process for everyone.
At any rate, we checked in – thanks to her experience with ballet, she is an expert at checking in. We walked up to the registration and introduced herself and me to the people working registration and we got my badge. Then we went to the youth table and she checked herself in there too. I brought her to her table, did some introductions and told her that I would be back to check on her later.
Sure enough, just as the first session was ending, Alice saw some parents stopping by and she bolted from the room and I got a call from a volunteer. *sigh* I went to pick her up and we walked around some of the exhibits and I gave her a snack and tried to set her expectations for the next session. I would take her back the junior ballroom (Alice loved that it was a ballroom), and she would be in the next session until lunch and then I would come get her.
Again, as the second session was close to ending (and unfortunately when it was getting to a good part), I got another call. I went over and they had Alice outside the ballroom working the sign-in/sign-out sheet. Fair enough. We walked over to the luncheon and got some great seats.
The keynote speaker was Tim Harris, who owns Tim’s Place. He gave a nice talk about the things he believes are important in life. Alice enjoyed it very much.
After lunch, I took Alice up to meet Tim.
Alice got a good hug from Tim and I did too because, why not?
After lunch, we walked a bit and Alice signed us up on the mailing list for D.A.D.S. No, really. She picked up the pen and wrote her name and tried to write ‘Northampton’. Then she signed me up as ‘daddy’.
I gave her the choice of going to the session with me to listen to a bunch of boring medical researchers or going back to the junior ballroom where they were going to have a dance party. Oddly enough, she picked the medical researchers with me. It was indeed horribly boring for her, so I had to employ all means of redirections and distractions until Alice just plain fell asleep on my lap.
A few interesting things that I learned – as an alternative to CPAP, there is an implant which is a hyoglossal nerve stimulator which jiggles your tongue with electricity and makes it protrude, clearing your airway. It’s FDA approved for adults and in clinical trials for children. Alice hates her CPAP.
I got some good advance advice about transition planning.
And I heard a very interesting factoid about what is the best predictor of whether or not a child with Down syndrome will be included in a general classroom: zip code. It is wear you live, not your needs or capabilities that determines if you are included. Scary.