When I first wandered into the autism blogosphere one autumn day some three years ago, I was struggling mightily. Sweet M's school had told me that I should look for another school: that she was not learning to read and might not learn to read more than the most rudimentary of texts, that her meltdowns were too disruptive, and that we should be looking for another school because she needed more than they could provide.
Autism was the A-word -- not because of an aversion on our part (though admittedly in the earliest days of early intervention we found the possibility of such a diagnosis daunting) -- but avoided because of the ambiguity of her diagnoses. Beyond that, little M would continue to have more educational opportunities if she did not have an autism spectrum diagnosis. (Yes, sad but true, even now, even in the 21st century in the grandest city in the nation.) Our goal was to keep her school placement until and unless we found a more suitable setting for our sweet girl. So out came Autism's Edges, with autism right out front but with our names changed to protect the guilty, the innocent, and those who rapid-cycled between the poles of hero and villain.
Since then lots of things have changed, not just hero-villain reversals and narrative whiplash, but other everyday things that matter enormously. Perhaps the biggest change of all: Sweet M is in fifth grade and she is reading at a fifth grade level. The fact that she is reading is nothing short of a triumph -- her personal triumph of turning perseverative behavior into perseverance, but also a professional accomplishment for the teachers, therapists, and doctors who have worked with her, and a hard-won parental victory for us. Hooray. She no longer has the meltdowns that frightened her teachers, her peers, and her father and I. And she is no longer a little kid, but is instead poised on the edge of adolescence as her hormones race to carve a waist, fill out curves, and replace the sweetness of childhood with the richness of puberty.
Amidst the changes, much has stayed the same: Sweet M is still at the same private special education school for kids with language-based learning disabilities (but that claims that it does not typically serve children with autism). And the school would still like us to find her a new school, if there were a more appropriate placement. Sweet M continues to struggle with expressive and receptive language, although now her vocabulary is exploding as she can add words through the visual channel of reading (as one autism reading specialist suggested would happen). She still has troubles with peer relationships; her auditory processing gap of several seconds makes the back and forth chatter that is typical for girls her age all but impossible.
Of all these changes, the one that is most important for this blog is that Sweet M can now read. Last night as I was answering an email, she sat and read over my shoulder. Her privacy -- so precious to anyone, but especially to those poised on the edge of puberty -- has become an expanding constraint on my writing here and so I have written less, and less, and less even as more and more has been happening in our lives. In some ways we may be aging out of this blog, though not out of our lives with a girl at autism's edges.
Over the next couple of days or weeks or even months, I will be looking back over this blog, and thinking about where to go from here, not only for the blog, but for our family. Should this blog continue as it has been -- with the protracted stops and starts of late? Probably not. Perhaps it should it take it cues from Sweet M: she has blossomed and perhaps the blog should grow in some new direction? And finally should we at last capitulate and move Sweet M to a school for kids diagnosed with autism (because, her school says, it would be easier for her there), or should we insist on keeping her spot at her school because it is the least restrictive setting in which she can learn?
This spring we'll ponder the question of aging out.