I'm a big planner. Always have been. I like to know what I'm doing, when I'm doing it and what comes before and after. I drive my husband crazy on 'lazy' Sundays wanting to know when he'll mow, what we're doing after I go to the grocery store, even scheduling in rest time. My iPhone calendar is my guide on any given day, telling me what to expect and where to go. Planning is a huge part of me.
In our day to day life with autism, it's both a blessing and a curse.
My son is like me. He likes routines. He enjoys knowing what's coming, what's next, what we're doing next week. Luckily he doesn't have to have the routine down pat - also like me, he's okay with being 'free' with no plans, but it's obvious we're both more comfortable with our schedule set. Even my daughter (who is typical) is like us.
So my planning comes in handy many times.
However, it's not always fun for me when my planning goes wrong. When something doesn't happen when it's supposed to, or the way it's supposed to. Or doesn't happen at all. I tend to get a little antsy and irritated that my predetermined plans didn't pan out exactly like I had them set up to.
And that's the story of autism. Milestones? We were at a standstill until Graham turned 3. Then all of a sudden he went from a screaming, hysterical child with developmental levels ranging from 3 months to 1.5 years to being able to recognize all letters and actually using a few words. You would never describe his development as 'consistent'. Quite the opposite. What I wanted and planned to get therapy-wise wasn't always what was given to Graham. Outings would work one day, then for no apparent reason to us they would be a disaster the next time.
Two weeks ago I was thrown for a loop when Graham's team recommended he be retained in Kindergarten next year. That wasn't part of the plan. He was supposed to be two years behind his sister in school. He's supposed to be in first grade next year.
After the dust settled, I realized his team is right. He is so close to being able to do this on his own - one more year would help him so much. His team is better than anyone could ever hope for - they are amazing. They would never recommend anything for any other reason than for Graham's best interest. So I agreed. Set the plan up in my head.
Then two days ago, we had an IEP meeting. The principal came in and made it clear she wasn't in favor of retention, and it appears our team will be at odds with her and it could go either way. And we won't know until June what her decision is.
Planning is impossible.
In yet another way, autism is teaching me. It's impossible to plan everything. Things on this road don't go the way they're planned. I need to give up trying to plan how things will be and work with what I have now.
But I'm still not giving up my trusty calendar.
Katie is a parent and advocate (and a newly accepted Graduate student in Special Education!) for her son with autism. She blogs regularly at Okay, Who Turned Out the Lights?.