Saturday, March 14, 2009

Aging Out?

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.


Ina Pickle said...

I've enjoyed this blog over the years, though I post very infrequently. When I first found it, and others like it, I was in fairly desperate straights, also. My son was diagnosed PDD-NOS, primarily because we'd already gotten him into a school for language disorders and they had made incredible progress with him. The brilliant experts making the diagnosis thought he was just oppositional, and not that disordered in his language.

He's 7.5 now, and I can guarantee you that he's not just "autistic lite." And because the special school he attended told us that, having brought him up to age level in expressive/receptive, his next real challenge was to learn social cues (which he would never get there in a classroom full of other autistics and assorted language disorders), we mainstreamed him. With great trepidation. He's done very well in some ways, and not well in others. We're struggling to read now, but he's making great progress really.

Now his teacher is talking about keeping him back for social reasons, because he just seems "so lonely," and I'm having to call an IEP meeting to get some extra services (and time in the special ed room where he can breathe) worked into his day. He has a terrible time managing normal interactions. It's a constant rejiggering, rebalancing, and struggle to figure out what is best/least harmful at any given point.

Which is the thing about abnormal development, at its core: it is still development, just without the familiar road signs and predictable progressions that others can fall back on in helping their children cope. The landscape, defined as it is by deficits, is continually shifting - right down to the appropriate diagnosis based on a child's strengths and weaknesses at any given point.

From what I can see, you have been a tireless, loving crusader for M. Congratulations on reaching another turning point in the long, winding road we're traveling. Good luck scouting ahead, and setting things in order accordingly.

Anonymous said...

Many questions, but let me offer my thoughts. I have been reading your blog for the past couple of years. I, too, live in NYC, and have a daughter who struggles with many issues similar to Sweet M. Your blog is one of the few that has helped me immeasurably over the last couple of years. You are balanced and wise and I have so much respect for both your decisions as well as your decision making process. For my own sake, of couse I want you to keep blogging as you have been. You help chart my own course, and that of my daughter. But I get it. Please know that whatever decision you make vis-a-vis your blog of course I totally respect. But I also want you to know how meaningful it's been to me. No matter what you do, many many heartfelt thank yous for what you've already done over the years.

MothersVox said...

Eleanor, I really loved reading about your son . . . He sounds similar to Sweet M in terms of his development and his multiple diagnoses. We also had an "expert" tell us Sweet M was oppositional when she couldn't even understand his instructions. That clinical relationship was shortlived. LOL. You're right, although their development is delayed, there is still development, and lots of it. I am so glad if this blog has been at all helpful to you and your son.

And Anonymous -- wow -- another mom of a girl with PPD-NOS in NYC! This is where anonymity is a liability, because it would be great to talk! I am so glad if this blog has been helpful to you too!

Anonymous said...

I know--I'd love to talk to you, too!! Some blog programs allow direct e-mails to the writer, but alas, not this one. I hope you will post with some sense of where Sweet M will end up next year. Perhaps our paths will cross at some point.

Elaine said...

As you are very well aware, the prevalence of children being diagnosed with an Autism Spectrum Disorder is increasing at an alarming rate. We would appreciate your assistance in helping us try to identify if the use of epidural analgesia/anesthesia and Pitocin during childbirth have any association with the development of autism.

If you are willing to participate in a survey questionnaire, please email Elaine DeLack, RN at and the questionnaire will be emailed to you for your completion.

Thank you in advance for your participation in this research.

VAB said...

You know I have always enjoyed this blog even in its current sporadic form (like mine). I share your sense that older children, even if anonymous, probably need more privacy. I too have been humming and hawing about what to do with my blog. The things is, when I was really having a rough time, and I read blogs like yours, I felt that there was a way forward, and I saw that obstacles were not necessarily defeats. That has been very valuable to me. It a good thing if parents can share what they experience. I'm looking forward to hearing more thoughts on this from you. Once again, it will be nice to know what a parent in a similar situation is doing.

Anonymous said...

oh, mothersvox! first of all, let me sing a loud song of joy for Sweet M and her reading!!!! WONDERFUL!!!

secondly: i love your blog, your voice, your stories of Sweet M and the wisdom, humor, and brilliance you bring to every topic. i'll miss you if you stop. and i'll keep reading you, should you decided to keep on, whatever direction you take. i can understand the questions. i've been having similar ones myself as fluffy matures, as our own version of 'regular' or 'normal' comes into focus.

Anonymous said...

I echo Kyra. Please don't leave us! We'll take sporadic!