Friday, April 4, 2008

Beyond the Ramp

I was honored to represent the Mass Down Syndrome Congress last night at the "Beyond the Ramp" event at the JCC in Newton. It was a resource fair sponsored by CJP, with both main-stream and Jewishly-related resources for people with disabilities. I had a ton of FUN! I must have had too much caffeine, because I talked a blue-streak to anyone who would come to my table. I kept telling people it was my first time and I was just a parent volunteer, but they all told me "you're doing a great job!".

I did get a little new information for myself, and I got to meet some of the folks I've only spoken to on the phone or in email. I had a couple of uncomfortable moments, speaking to women from two different organizations, both of which leave me unsatisfied (at least for my own children's needs), but I think I managed to be respectful and not insult them. (I hope so!). And there was the older lady who went on and on about "Down syndrome children" and "how wonderful and sweet they are" ad-nauseum. I need to develop a thicker skin on the person-first language issue and the generalizations. I was a little shocked at how angry she made me feel, and I was so glad that I was at that moment also talking to someone who is a professional from one of the organizations and whose own daughter just graduated high school - she (the mom) was a great example for me [plus I got to see prom and graduation pictures!]

Miss Sofia is still hyped up on steroids, and wants NO part of being with mama. This morning I had to drag her away from David, and then, when we met up with my friend at the grocery store, Sofia only wanted R to hold her, would not even let me put her in the car!

Cleaning ladies coming today, so now I can start getting ready for Passover. The Butcherie is opening tomorrow night after Shabbos, so I got a babysitter, and David and I (and hopefully my friend and her hubby) are going out to dinner and then doing all my Pesach shopping tomorrow night. I think I'm making Turkey and either Lamb or Veal. Not sure.

And we're going to cousin A's birthday party in CT on Sunday, which means another glorious day with my in-laws and that extended mishegas of a family. After that, I think David is off to the Dominican Republic for a few days.