Trying Something New

About four weeks ago we started something new with Sweet M — we started something called Brain Engineering.

Brain Engineering was developed by Dr. Cheri Florance, a speech-language pathologist and psychologist whose son Whitney was diagnosed with classic Kanner autism, and is now functioning well in as a chemistry major in a New York college. Florance writes about her son and his evolution in a book called Maverick Minds, which I read about two year ago.

The program involves building on the strengths of high-visual learners and borrowing from that strength to develop the auditory channel. The sessions, which Fathersvox and I do at home under Dr. Florance's instruction, are almost disarmingly simple. And for the first three weeks we didn't notice much, if any changes, in Sweet M's behavior, though we did notice that her mood was improved. We were cautiously optimistic since we've tried so many things to help Sweet M develop greater flexibility in her thinking, from vitamins to PCIT, from pharmacotherapy to probiotics. With the exception of pharmacotherapy, nothing seemed to help her much, so we were wary, but also willing to give it our all.

Then last week, all sorts of things started to happen.

• When Sweet M comes home from school lately she chooses to look at her books instead of playing with her Gameboy. In fact, I don't think she's taken the Gameboy out of its recharge cradle for at least two weeks, maybe longer. She is very very interested in her books, which is radically new.

• On Friday she came home from school and was making up a song about how "I love [name of the boy she has a crush on] and [name of the boy she has a crush on] loves me, I can read and do math too because I'm so smart all the kids love me." I didn't quite get the words . . . it wasn't rhyming . . . but she was making up a song about how great she is. That is a change.

• Tuesday she came home and said "Mom, what's a benefactor?" I wanted to say that's what we need for your school tuition for next year, but I skipped that. When I told her that a benefactor is someone who helps you achieve your potential and ambitions by supporting you with money and guidance, she said, with obvious comprehension and satisfaction — "Oh, so that's what a benefactor is." I asked where she'd heard the word and she said she heard it on a cartoon – Foster's Home for Imaginary Friends – and had been wondering about it for weeks.

• A little later in the same conversation she asked me why there are toys for girls and toys for boys, and I said because people have strange ideas about what boys and girls should do, but that if there are boys' toys she wants, she can have them because they're really all just kids' toys. She said, "Oh no, I can't have boys toys, I'm a girl." I guess I'll have to do a little more work on that!

• On Wednesday she asked me why the city of New York can't be painted pink and purple (her favorite colors). I said I didn't know, maybe we should write a letter to Mayor Bloomberg to ask him why. She said that's a good idea but I don't know him, does he know anybody? I said he probably knows the Governor. She said, Great, I've got it, we can write a letter to the mayor from the governor, and then he'll answer. I said I think he'd answer if you wrote him and she said, "Of course he wouldn't . . . I have to pretend I'm the governor." She's probably right about that. But she said, "If I wrote a letter and pretended I was the governor that would be sneaky." Yes, I said, that would be sneaky.

• On the weekend she said, "Hey Mom, Can I ask you a question?" I said sure, and she asked, "How do people get rich and have private jets and big cars?" My answer to this was a bit too long, but I didn't give her the entire first five chapters of Capital or The Wealth of Nations.

• Her school insisted that she go on Field Day last Tuesday. In the past two years we've kept her home because she tends to meltdown when she's outside on a hot day and asked to participate in competitive sports. (Exactly like both of her parents, no fans of ESPN in this household.) Anyway, we were reluctant to let her go because we didn't want to risk a meltdown when her spot at school is so precarious, but it seems to have gone okay. The teacher made her photography assistant for the day, so she got to be doing something special and didn't have to do boring sports. And she had fun in her special job!

Also, two weeks ago she asked if she could have ballet, ice skating and piano lessons, so this past weekend she started ice skating lessons. She was on the ice for 30 minutes with two instructors helping her get her skating legs. We're trying something new, and she's eager to try all sort of new things now.

Fellow autism-mom Kyra of This Mom wrote a moving post about Remediating the Autism . . . struggling with the idea that even as she adores her son Fluffy just as he is, she works long and hard to help him have every chance for the fullest, richest life.

With kids on the spectrum, this means taking chances on various therapies and diet regimes (for Kyra and Fluffy) and other sorts of interventions among so many of us . . . psychotropic medications, special schools, intensive behavioral or communicative interventions. And for parents who believe their kids have mercury poisoning, biomedical interventions.

Parents struggling to make the right decisions for their kids, whether neurotypical or not, is an old story. We all do it. We all make decisions on behalf of our children with the very best information we have on hand, sometimes with a bit of speculation and faith. We try to find them the best possible school setting. We take them to best doctors we can find. We do whatever we can do to help them have the richest, most delicious lives they can have.

Sweet M is out on the ice, getting her ice skating legs, and we're getting our Brain Engineering legs . . . we'll keep you posted on how it goes as we glide towards something new.

A is for . . .

autism
adoption
alternatives
altruism
alacrity
analysis and
all night . . .

when I stayed up reading Ralph James Savarese's A-list account of his adoption of DJ, a six-year-old boy abandoned by his birth parents because of his classic autism and their own emotional impairments, then cast adrift in the rough, unforgiving seas of the American foster care system.

At four in the morning, just shy of three-quarters of the way through the 400-plus-page account, I reached a point that I sometimes encounter in reading — I wanted to finish, get to the end, know what would happen next, and I didn't want to finish, get to the end, and not be able to stay wrapped inside this astounding narrative where the boundaries between parenting, activism, and advocacy are fluid if not seamless, an account that certainly complicates some of the recent discussions of the role of parents in the autistic rights movement.

First, for those who've not yet picked up their own copy of Reasonable People: A Memoir of Autism and Adoption (and I urge you to do so right now), a brief plot summary (spoiler alert: skip this paragraph and the next if you don't want to have the narrative trajectory derailed): Savarese and his wife Emily, an autism inclusion advocate and expert, met DJ through her work. DJ had been abandoned by his birth father, and neglected and abused by his alcoholic birth mother. He'd been sodomized and further abused in an overcrowded fostercare home where an adolescent boy, also a victim of sexual abuse, had tried to work through his own trauma by violating the then-speechless-thus-perfect-victim, DJ,

The story retraces the Savareses' journey through the twisted legal terrain of fostercare adoption, and into the pioneering territory of full-inclusion for DJ in a public school, in the least-restrictive educational setting, the contested terrain of facilitated communication, and the heartwrenching reunions of DJ and his birth sister — the child who had taken care of her little brother when addiction had rendered their birth mother incapable of mother-work. Through uncompromising love and commitment to DJ and his personhood, the Savareses create a home that is safe enough for DJ to reveal — in his own typed messages — the magnitude of the abuse he'd suffered in fostercare. I did skip ahead to read the last chapter, written by DJ himself, so I know that there is an amazing conclusion, if not a saccharin-laced smiley-faced happy ending.

While there is much to love in this book and this family (pictured here), and much to discuss about it, what appeals so profoundly to me in the story is Savarese's unwillingness to throw out the baby with the bathwater, whether that baby is his son, a commitment to inclusion and the principle of the least restrictive setting, or the emancipatory possibilities of psychoanalysis — a theory that has a well-deserved bad reputation in the autism world, saddled as it has been with the legacy of mother-blaming encapsulated in Bettelheim's "refrigerator mother" hypothesis.

I have been grappling with this very theoretical issue in my own more work, wondering what to do with psychoanalysis, and wondering what atypical language acquistion means for the development of structures like the unconscious and desire. Like Savarese, I came of age intellectually in the cultural studies milieu of the late 1980s and 90s and was steeped in a heady brew of psychoanalytic theory, dialectical materialism, and feminism.

Autism parenting has challenged each of these frameworks, but none more aggressively than psychoanalytic theory. I'd backburnered my questions about this until recently, when my psychoanalytic reading group had asked me to present a paper about autism and psychoanalysis at a regional conference in February. I had agreed, and then, still conflicted about the role of psychoanalysis in autism's misrepresentation, I was sick the weekend of the conference and wound up not going. Conflict can do that to any body.

Savarese's narrative, healing for himself and his family, has been similarly healing for me. With an easier integration of my lived experience and theoretical models, I hope to be able to present that paper this summer at a national conference — thanks to Savarese and his intellectual and emotional integrity.

And more on Reasonable People in the days to come . . . 100 or so enveloping pages to go.

Autisms — Every Day, Every Night, Everywhere

As those of you who've been reading Autism's Edges for a while are aware, I'm known to be mildly to moderately kvetchy. Kvetching is Yiddish for complaining, hopefully in a sort of robust, community-building sort of way. Kvetching is one thing that New Yorkers are famous for, along with the Mets, the Nathan's hot dog, and the Empire State Building. But this week I wasn't kvetching much because this was one of those weeks when one relishes the centrality of the congested, noisy, expensive place that is New York City — because this week the city could have been famous for autism culture, from Javits Center to the Empire State Building.

First there was Book Expo America at the Javits Center: the annual conference of the book industry that brought Kim and Fran Peek, John Elder Robison, and Ralph James Savarese to the city. I missed the Peeks' joint book signing of The Real Rainman, and I didn't succeed in snagging a copy of the galleys of John Elder Robison's forthcoming Look Me in the Eye, but I did have the pleasure of meeting Ralph Savarese at his Book Expo signing and then heard him and his son D.J. read on Wednesday evening at Syracuse University's Lubin House on East 61st Street.

Above: The Savarese family reads from Reasonable People and other texts.

Meanwhile, on my own autism-mom front, I spent most of Wednesday doing half-hearted school applications for Sweet M, looking as we are for a more appropriate and supportive setting for her. Then on Thursday there was the social studies fair at her school, where I got to see that she understands considerably more about immigration than we or her teachers give her credit for.

Above: Sweet M's model of a turn-of-the-nineteenth-to-twentieth century Lower East Side tenement.


On Thursday evening I heard more than a half a dozen autism parents and autistic individuals including autism-mom blogger Kim Stagliano who blogs about life with her three autistic daughters on Arianna Huffington's Post; Michele Pierce Burns and Michele Iallonardi who have been active with Autism Speaks; and fiction writer and autism mom Barbara Fischkin, who organized the reading, billed as the “First Annual Writers on Autism.” Let's hope it's the first of many. Autistic college student and writer Rachel Kaplan co-read from her work with her mother; John Robison read from his forthcoming memoir (Robison is also the sibling of bestselling Running With Scissors author Augusten Burroughs); novelist Sheila Kohler read a fictionalized account of a grandmother's encounter with her daughter's denial of the deafness in her child; and Landon J. Napoleon read from his novel ZigZag.

It's been a big week, and it hasn't felt like Autism's Edges, but rather like Autism Central.

There is much to think about from each of these events . . . and I'll be mulling things over for the next couple of days . . . thinking through what I heard and saw and felt, writing more about Ralph Savarese's book, and mulling over the politics of autisms' communities.

The thing that was clearest this week is that there isn't any one thing called autism at all, or even anything as simple and sequential as an autism spectrum announces itself to be. There are so many autisms, and so many responses to life with autism. Even as we ask the wider world to embrace neurological diversity, I hope we'll embrace the neurodiversity, the autisms, among us.