How to sum up the weekend in a nutshell? Exhausting, informative, inspiring. That sounds like the right combination of adjectives.
Exhausting because we had sessions and meals round the clock and did not go to sleep till midnight both nights and were then up early in the morning. While the kids did have a good day camp program, we still spent a lot of time chasing them around the hotel. It was a big place and Y loves nothing better than lots of room to run around. Mealtimes especially were challenging because the kids attention span is about ten minutes and shabbos meals run for much longer than that. My husband and I often found ourselves in the middle of a conversation, which we had to interrupt to go save a child before they ran out of the building or got themselves in trouble otherwise. The sheer volume of sessions was also exhausting but we had primarily to learn, not to relax.
Which leads me to my next adjective- informative. We attended sessions on the topics of family dynamics, how to respond to a crisis, how to advocate for your child and bridge the home-school gap.
I found the latter session particularly helpful because I have really been thinking about that topic a lot. Y is doing well at school but I would like to see more carryover into the home, because sometimes there are skills he has that I dont even know about. The presenter gave some good suggestions about working together with the teacher to choose three areas that we will carry over from school to home. She also recommended trying to model the school environment in language and format as much as possible in those areas. My husband attended a session on mental health in individuals with Down Syndrome and foiund it fascinating to hear from parents of older children what issues they deals with further down the line.
Some session were meant more for support rather than information. We had a mother's group Friday night where everyone shared about the current challenges with their special needs child. My husband gave a very well received session, speaking a bit about the Jewish/theological aspects of raising a child with special needs. It was poignant to hear him speak about Y. and a bit of a trip down memory lane.
Inspiring- it was so nice to meet and interact with other parents. We met quite a few parents of kids with Down Syndrome but also many families with children with other disabilities. We compared notes and spoke about schools, skills and lawyers. It sounds so cliche to say that these people are inspiring...but they are. They juggle so many different things and somehow make it work. Some of them have more than one child with a disability yet they still manage to have a smile on their face. It was nice to be with kindred spirits, people who really get it.
It was also nice to be surrounded by young advisors who love all the children and think your kid is the cutest kid to have ever crossed their path. And will watch them for hours on end so you dont have to.
It is a lot to process and part of me is probably still working through it all, but it was definitely a positive experience.
Meanwhile we are back home now and back in our regular routine. I am trying to take care of lots of things on my to-do list this weeks: meetings, reserving spots in camp, paperwork for the Board of Education, writing new goals for Y's reshab workers, etc etc. Just a regular week in the life of. All I would like is some sunshine...hope the weather is nicer wherever you are reading this.