Facebook lately gives me some memories to browse every day. I've been on the site for 12 years now, and it's fun to look back at what was on my mind four, seven, nine or more years ago to the day. Yesterday, it dealt up something cute Janey said 12 years ago, when she was 5..."Don't put your fingers in ice cream! That's NOT funny!" which I reported I didn't know the origin of. I had a chuckle, but then started to think about how such random and funny utterances come up now and then from Janey, and that I'd still be surprised and happy to hear her say something like that today, all these years later. She hasn't progressed in her speech. She ebbs and flows, but her talking doesn't get better or worse much as the years go by.
For a minute, thinking about her lack of speech progress depressed me. She's had so many years of school, of speech therapy, of ABA, of just hearing us talk to her. Why hasn't her talking gotten better? Why hasn't she made any progress?
And then I started to think---why is the only measure of success with kids like Janey that they progress? Why are IEP goals always about reaching the next level? Why do people (us included) hang on cool things she says to see if they are heralding a new era of talking? Why does the fact that Janey stays steady with most skills not make us happy?
Progress, it strikes me, is how we separate groups of kids with autism. All kids diagnosed as being on the spectrum start out behind in some area. But the ones we call "high functioning" or "mild" are the ones that learn new skills, that come close to climbing up to the norm, that get with the program quite literally. Those like Janey, who mostly have a steady state, are by the very fact that they are the opposite of these successes considered failures. Not that anyone would say that, not that it's what we think as parents, but if you look at measurable progress and there is none---what else would it be called?
What if that wasn't how we measured kids like Janey? What if her occasional bursts of speech, her momentary shows of understanding we didn't know she had, were just seen as part of her autism? What if we didn't hang onto the idea that she should be progressing? What would we use instead to measure success? What would be our goal?
Happiness. Pleasure in daily routines. Connections to others. Just being herself, and having herself accepted as a meaningful member of society. That's another way to measure success.
If I use that as my yardstick, I think Janey is a success. She is happy much more of the time than she is sad. She enjoys her daily routine---the bus ride, school, coming home to a meal made by Tony, watching her familiar movies, taking a car ride, jumping up and down, running in the driveway. She has connections to many people---more than I do, probably. She is loved at school and home, she has fans out in the community---she's a bit of a celebrity at the grocery store. She is herself, always. As for being accepted---well, we accept her, her school accepts her, our neighbors accept her. Wider society---that's still a work in progress, the kind of progress I'm talking about here, and one that isn't her job but the job of said wider society.
I'm asked every year at her IEP meeting what my vision is for Janey. If I were totally honest at these meetings, I'd say just one thing---happiness. Let her be happy. Give her reason to be happy. Put supports in place so she is happy for all of her life. That's success.
