I keep a list of blog ideas for those days when I need some extra inspiration. I've had one for a while that says "making autism a factor in my life but not the focus." This is not something I know how to yet; it is a goal.
When Moe first started his in-home ABA program, I joined an online group for parents of kids with autism. I asked for tips on surviving a full time, at-home therapy program. In addition to "find a hobby," one piece of advice that stuck with me was to not burn out the first year.
But you see, I'm not good at pacing myself. When I have a new problem to solve, whether it is something minor, like buying a new comforter for Jelly's bed, or something major, like an autism diagnosis, I tend to obsess. I reasearch. I read. Instead of sleeping, I think and think and think. It is my way of getting control over the situation, and I like to be in control. I suppose that's why I was a good program manager, back when I had a career.
Because of all that reading and research, I always question whether I'm doing enough for Moe. I read about parents running full time Son-Rise programs and wonder if I should be doing that. On top of his 30 hour a week special day class, Moe gets extra OT and music therapy, but some kids in Moe's class get extra 1:1 ABA, some do more speech therapy. Should I be doing that too?
The other day with my parents at dinner, I expressed this concern (it wasn't the first time), and Jeff got a little upset with me. He pointed out (again, not for the first time) that Moe basically has a full time job and he's not even four years old. My dad pointed out that the more I spend with Moe, the less time I have for Jelly. I have to try to balance the needs of a typical toddler and an autistic preschooler, as well as our needs as a family, and my needs as an individual.
But right now, autism wins. These are crucial early development years, and perhaps it is unrealistic to think that Moe's needs could be anything but the defining factor in our lives. I think I'm going to make turning autism into a "factor, not the focus" a long term goal. For now, I'm going to do my best to give myself an occasional break (provided by my book club and sporadic trips to the gym) and try to really believe that we are doing all we can for both our kids.