|Janey, age 13---Ten Years In|
I will be honest and say I might have been quite discouraged in some ways. Janey talks now probably less than she did at the time she was diagnosed, and far less than she did when she was two, before her big regression. Her academic growth has been very, very slow. She doesn't read, or write, or add or subtract or reliably do things like identify shapes or colors. She is not fully toilet trained. She still needs a huge amount of help with self-care. In short, if you look at measures like standard IQ testing or academic achievement or potential to live an independent life, she is not one of autism's success stories. That would be a hard thing to have known in advance.
However, in some ways, I think I would have been quite encouraged. My glimpse forward might have landed on any of quite a number of happy times just this past weekend. Maybe I'd have seen us all watching Weird Al videos, together on the couch, laughing our heads off. Maybe it would have been the big Thai take-out feast we had as a pre-back to college treat with Freddy, Janey joining in with huge smiles and her usually adventurous appetite. Or I might have just seen one of the many times Janey's engaging manner and enthusiasm for life improved our days.
While talking to my friend Michelle about these thoughts, we touched on what I think many out there have realized. There are different kinds of autism. I truly don't think it would have made a huge difference what we did in terms of Janey's speech and academic development. I see other kids that are in the same program as her, kids who started at a baseline like hers or in some cases, far lower, and who now read with ease and speak in a way very close to typical. However, Janey has something that I don't think all kids starting where she does develop. It's hard to put my finger on. It's not really social skills, or ability to engage with others, but it's a personality that in some ways is very unlike the stereotypical vision people have of autism. In that way, she has progressed. I would hope if I were able to glimpse forward, I'd have seen that---the spark, the joy, the humor.
When Janey was first diagnosed, fear and hope battled in my mind. I had hope that she would regain all her speech, that she would somehow progress to the point she left autism behind. I had fear that life for her would be a joyless life, that she would never be happy---and because it's very true that a mother is only as happy as her saddest child, I would never be happy either. Now, ten years later, it is fair to say I have far less hope about Janey's potential for typical progress. However, the fear is also much less. The Janey that exists today is not defined by what she can't do. Of course I fear for her future, often, but I also delight in her joys. In many ways, I have changed more in the ten years than Janey has. Even if I had been able to look forward, I would not have looked at Janey with the same eyes I do now---eyes that see her for who she is, a valuable, special, frustratingly but steadfastly complex and unique.
Here's to the next ten years.