what we told them – part three, the wrap-up

~

Ed note: This is part three in a three-part series. In other words, don’t panic, this is finally coming to an end. To read parts one and two, please click HERE and HERE.

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.

And funny.

Nose to hairline.

And generous.

Tracing the line of those perfect cheeks.

And you can do anything.

A kiss.

Anything.

And another.

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.

17 thoughts on “what we told them – part three, the wrap-up

  1. Glad I’m not the only one up this early! I was just wondering, do you still use the term”expected behavior” with Brooke? I remember you saying it was what used in the past.

    • Less than we used to – more judiciously, I suppose, but yes, we do still use the term at times. The thing is, autistic or not, behavior is not a free-for-all. She will need to understand that when her behavior is “unexpected”, there will be some sort of natural consequence / reaction from people who don’t understand. If we give her the tools to express herself in other ways, then ultimately she will, at times, have the choice of which expression she uses and / or be armed with the tools for self-advocacy / explanation when it’s not a choice at all.

      Did that make any sense?

      • Perfect sense. Big difference between unexpected and wrong. Your insight is always an invaluable asset to our community, thank you!

    • I know we use “expected/unexpected” rather than “appropriate/inappropriate.” We are teaching perspective-taking using the social thinking programs. The point, however, is not to squelch him, but to have him learn to think. Even those who are not autistic have an idea of etiquette, and there are things you want to do and say in public but don’t, because it would be disrespectful and rude. Also, “expected/unexpected” is not “good/bad.” A surprise party is unexpected, but not a bad thing. A joke is unexpected, but not a bad thing. And we might expect another person to give us a hard time about something, but that doesn’t make it a good thing to do.

  2. I forwarded this to an educator/ friend, this us what i wrote to her: What struck me were the two paragraphs where you talk about autism as being pervasive. Those two paragraphs are eye opening, and humbling for me as a parent. All the times I’ve squashed behavior that I thought was undesirable. Not misbehavior, which should be addressed for obvious reasons, but the weird behavior, the ones they make him stick out, and ultimately make my kid who he is. The ones that make me cringe FOR him. Behavior is communication and I often forget by placing my one little character into the context of the majority. It’s clear that I have work to do as a parent, and I’ll allow myself foibles here and there. I’m a work in progress too I guess. Self hatred for my mistakes doesn’t make me a better parent. Correcting them does.

    • I love this. Everything about this. But THIS …

      Self hatred for my mistakes doesn’t make me a better parent. Correcting them does.

      Yes.

      Thank you.

  3. “Because that’s where happiness starts – with the ability to effectively and safely communicate.”

    “…can you imagine how much better the world would be if we could all live in our joy so freely?”

    I can’t but hope and feel, that these people came out better after you told them.

    Love you,
    Mom

  4. I really love this piece. I want to share it with all of the parents I know…both of typically developing children and not. Well said.

  5. Bravo, Jess. So well done. You found the courage to question and interject, and I’m sure you did that with gentle respect, which makes the critique or disagreement heard.

    Indistinguishability was the goal (in my mind, after it was suggested in his diagnosis) for my eldest son. In some ways, it still is, but more framed as “thrives without support”. Thank you for reminding me that indistinguishable is not a positive goal for ANY child. What a dull world this would be if we were all indistinguishable from one another…

    • “indistinguishable is not a positive goal for ANY child. What a dull world this would be if we were all indistinguishable from one another …”

      LOVE

  6. I’ve loved this series, loved that you are out there teaching these ideas and taking the time to write them up here for others to use. We have always been fortunate that the first person to introduce these ideas to us was the head of our first EI team. They came to us after a year when my son had been kicked out of three daycares and was called a monster and plenty of other things no adult should ever say about a kid. A few years later it’s not the therapies i remember most it’s that someone finally really saw that there was the gentlest of souls behind all the behaviors and never worried about what he did, only why. It was a tremendous gift to our family at a desperate time. So yes, powerful, indeed!

  7. I have goosebumps. Not only do EI staff need this, but all educators need this. I celebrate my child’s differences every day. Hell, I flap right along with him. He loves it! Behavior is communication! Quinn’s school sent home a note one day that he was almost disruptive with wanting to hug all the time. You want him to stop hugging?!? He just learned how!!! Don’t you DARE attempt to squelch that behavior! Perspective is so SO important! Assimilation should never be the goal – loving ourselves for who we are (and who are kids are!) should be.

    Find me one neurotypical person who isn’t considered weird or strange by someone else. You can’t. But how quickly people point out the weirdness in our children… without looking at their own quirks.

    Thank you, Jess. Your voice is powerful and strong. And heard.

  8. Jess, I’ve really enjoyed reading these posts. Our daughters are about the same age and my learning curve has been vastly helped by your insights and experiences. I’m a better parent and advocate because of your blog. Thank You.

  9. Beautiful job with this series. Early Intervention providers are truly the “first responders” to help our kids other than their parents, and the insights you and the panel provided were invaluable. Many families will reap the rewards of that session!

  10. Pingback: Philosophy | organizedbabble

  11. I’ve waited until your finale to comment. Thanks for speaking for so many parents who wish they had the opportunity to do so and for having the courage to publicly disagree with the so-called experts BECAUSE IT MATTERS SO VERY MUCH.

    I hope the audience took it to heart and will use the insights to change or enhance how they work with our loved ones.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s