This weekend we attended our first ever CdLS family gathering!
On Friday I rearranged my schedule to work just a half-day, thinking that we would be ready to leave as soon as Isaac got home from school at 3 pm. I should have known better – we are not the world’s most organized family, so we actually set out closer to 5:00 pm. All three boys tolerated the car ride amazingly well. The older two are quiet as long as their Gameboys are charged, and Ben slept most of the way there.
The family gathering took place the next day at the Center for Creative Play in Pittsburgh, PA. What a neat place that was! I wish we had something like that in our little town. We were surprised at how many people were there. There were about 14 individuals with CdLS (and I think Ben was the youngest one there; the oldest person with CdLS was 28 years old), and lots of friends and family. We met some truly wonderful families and parents, and enjoyed meeting all the kids. It was surreal seeing all these kids whom we’ve never met before who look so much like Ben. (BTW: I’m not posting any of their photos here because I didn’t ask their parents’ permission to do so.)
Mark spent most of the meeting time out in the play area with the boys, while I stayed and listened to the speakers. Ben really loved this wooden activity center. (I wonder where we can buy one like it.) Ben enjoyed being held by lots of different people, and he was quiet and content for the most part.
The food was good. They even had our favorite pizza with basil and tomato! And it was nice to see all of these kids with CdLS who were eating by mouth! 🙂
Truthfully, before we went to the family gathering, both Mark and I approached this weekend with some trepidation. We weren’t sure how we would handle seeing some of the older kids and adults with CdLS, and we worried that it would be too overwhelming. For me, anyway it turned out not to be as scary as I expected (although Mark’s experience was a little different, so I won’t speak for him). I have a sister with developmental disabilities who is now 24, and the older kids reminded me so much of her.
I hope we get the opportunity to attend more meetings in the future. Mom: you will have to come and bring Maryam too! 😉