Ed other note: As I said yesterday, please understand that the following is to the best of my recollection only. I had compiled some notes for the presentation, but veered off of them quite a bit, as I am wont to do, so I can only rely on my memory to piece together what I said and in what order I said it. I think it’s pretty accurate, but I’m also glad that no one’s life depends upon my recounting of that morning’s event.
We left off talking about goals. Talking about how one goes about setting goals within the context of RESPECT. About what that means, in a practical sense, when your client is two years old. About how to decide what is important.
I told them that, for me, it always starts and ends with a question …
Will this ultimately contribute to my daughter’s happiness – in the fullest and broadest sense of the word?
I explained that happiness to me begins with the ability to communicate her wants, needs, thoughts and feelings with others. I told them that it also means having the ability to participate in her community and to contribute to society to whatever degree she is able, and to reap the rewards and benefits of her contribution. It means having the full faith and support of enough people in her world to be able to reach her potential as a human being.
Above all, it means being celebrated and loved for everything that she is rather than feared, reviled, belittled, or systemically underestimated for what she is not. It means not having to live a life disguised as something that she has spent years being told that everyone else wants her to be.
I told them what I’ve learned from my adult autistic friends. From the ones who have spent lifetimes battling self-hatred and depression — the ones who have pulled themselves back from the brink of suicide. I told them that it breaks my heart to hear their stories, but so too, it informs everything that I do and everything that I say when I sit before them.
I told them that we — yes WE — all of us — plant the seeds of that self-hatred when we approach our kids as though they are broken, deficient, incomplete. When we send them the message from eighteen months or two or three that they need to change, or at the very least suppress, who they are in order to be acceptable to the world at large. When we start by setting goals designed to turn them into less autistic versions of themselves.
I told them that I see it as OUR responsibility – TOGETHER, from moment one, to tell these kids that they are already acceptable, already wonderful, already whole. That they have a disability, that they need support, that they need help, but that they are not WRONG.
I explained why I feel that way. Autism is pervasive, I said, — it’s right there in the description of what it is — a pervasive developmental disorder. It is the filter through which my daughter experiences her entire world. The way that she sees and smells and tastes and hears and FEELS everything. Where would I start, I asked, in making her someone she’s not?
So indistinguishability from her peers is not the goal, I said. But if we accept that it’s not, then what is? What it is for me, I told them, is to mitigate the challenges that come along with her wiring in order to allow her to live HER life to HER fullest potential. Her life – as her beautiful, fabulous, different, autistic self – not as someone the world mind find more palatable.
I needed to say something here, but I wasn’t sure how. When Dr. Henry had been speaking, before I had begun, she had talked about targeting behaviors. “Not just those that are obviously maladaptive though,” she had said, “things like flapping and spinning and other behaviors matter as well because they cause these kids to stand out.” (Ed note: That’s not an exact quote, but I am fairly certain that Dr. Henry would agree that it is a fair representation of her remarks.)
It’s not easy to take issue with a fellow presenter, particularly when you’re seated at the dais between her and her colleague. It’s even more difficult when they both have a lot of letters after their names. And it’s even more difficult when they invited you there in the first place. But they didn’t invite me there to keep my opinions to myself.
“I disagree,” I said, “that we need to work to discontinue behaviors that contain no inherent risk to our children other than identifying them as different. My kid does not blend,” I said, to a chuckle from the room. They were no longer chuckling when I added, “and that’s okay. That’s more than okay. It’s wonderful.”
I reminded them again that behavior is communication. I told them that, on that premise, if we aim to extinguish a behavior without first finding out what it communicates, we run our children into brick walls. There are behaviors, I explained, that are not okay. Hurting others is not okay. Hurting themselves is not okay. But, in order to effectively support a child, the first question has to be, What is he trying to tell us? And the second that necessarily follows is, What tools can I give him to make that known without hurting himself or anyone else?
Because that’s where happiness starts – with the ability to effectively and safely communicate.
I talked about joy. About how my girl expresses it. I told them how every fiber of her being takes its part in bringing joy to life. How it springs from her body — her hands and her shoulders — how she vibrates and bounces, how she runs and skips and squeals with delight. I told them that we all could take notes from her and said, My God, can you imagine how much better the world would be if we could all live in our joy so freely?
I told them that extinguishing that behavior (ed note: “happy running” and “squealing” are both behaviors that it’s been suggested that we should help Brooke work to suppress) because they don’t fit the mold of society’s expectation strikes me as terribly wrong-headed. I told them that’s why goals – each and every one of them – have to be subject to rigorous questioning before we apply them to our children. I told them that I ask each and every time we set out to determine where we’re headed …
Is this a goal that I would set in order to help my daughter to become that fullest version of herself or is it one that I would set simply because it will help her meet societal expectation?
There is no question, I said, that there is an overlap – an intersection on the Venn diagram where some of the skills that she will need in order to be happy will be the ones that will allow her to meet society’s expectation, because sometimes having the ability to meet society’s expectation is precisely what makes us happy. But we have a responsibility to our children to ask that question each and every time we decide what’s important to us, and what will be important to them.
Because otherwise, I explained, we’re setting up a paradigm in which our children are destined to fail. Or, perhaps worse, succeed at a desperately high cost to their sense of well-being.
Talk to adults on the spectrum, I implored them. Read their blogs. Seek their perspectives. We, all of us in this room, have a responsibility to the next generation to think through the consequences of our approach.
Indistinguishability cannot be the goal. The cost is simply too high.
There was more. I can’t remember it all. It was raw and emotional and far more pleading than I expected it to be. But I had to wrap it up. Time was, as it is now, running short. So I ended where I began.
You are powerful, I said. What you do matters. How you approach our kids matters. Because if you focus on what they can’t do or what you’re afraid they’ll never do and who they aren’t now and who you think they won’t ever be, you chip away at what’s possible. And what’s possible, especially at one and two and three years-old is ANYTHING.
I told them that I wanted to end with a story. To give them just a little window into the world of my daughter — a ten year-old girl who had almost no novel speech at the age at which they would have met her. Who still has the oral language of a kindergartener, but for whom the world is a wide open field – hers for the taking.
So I told them what had happened the morning before. The story I had already told to you. I told them this …
I went into Brooke’s room. I knew she was still asleep, but there’s no greater luxury than cuddling next to her in the morning, telling her that she doesn’t have to be up yet.
Soon, baby, but not yet.
I curled myself around her – her little sparrow body automatically finding and filling the space between us. I whispered into her ear, You don’t have to get up, baby. Soon, but not yet.
She turned her face to me. Eyes still closed. A smile. Ever so slight. Ever so serene. Unforced. No pretense. Unmistakable. A smile.
I love you so much, baby, I said. So very, very much.
I ran a fingertip around that beautiful face. That beautiful, incredible, perfect face.
You are smart.
Chin to nose.
Nose to hairline.
Tracing the line of those perfect cheeks.
And you can do anything.
She didn’t open her eyes.
But the smile never left.
Ever so slight. Ever so serene. Unforced. No pretense. Unmistakable.
A smile as she said,
So can you.