what we told them – part two

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Gratuitous photo of my beautiful daughter – because she’s what this is really about. 

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Editor’s note: 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.

Editor’s other note: This is part two in a series. For the back story, please click HERE.

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And so I began in the place where our words met.

You are powerful.

You have an impact on these families, I told them. One that lingers long past the time that the kids age out and you move on. Your perspective matters. The way you approach these kids matters. The way that you teach the parents, by your example, to view their children’s challenges matters.

I told them the story of Brooke’s initial diagnosis. About the neuropsych with the white lab coat, the imposing accent and the Harvard degree hanging behind her head on her wall — the one who told us things that she simply couldn’t know because she wasn’t smart enough or brave enough or human enough to say the only thing that she had any right to say — “I don’t know.”

I told them how, as we were still absorbing the shock of the word autism, Luau had asked her questions that were as understandable as they were unanswerable — about what the diagnosis would mean for Brooke as she grew. “What would she be like at 10?” he had asked. “At 20? At 30?”

I told them how this woman, who had spent all of a couple of hours with our then three-year old daughter had said,“She will likely live a very solitary life. She will not be comfortable around people and will most likely live alone.”

Some of them gasped.

I explained that if we had been different parents, if we hadn’t walked out scratching our heads and saying, “That just doesn’t jive with the kid we know,” things might have been really, really different. Disastrously different. Had we been willing to accept the dramatically erroneous assumption that this woman had made based not on who our daughter was but on what she thought she knew about autism, we might well have accepted that there was no point in giving her tools to do something in which she, according to the doctor, not only had no interest in, but to which she was actually averse.

I told them that assigning a lack of motivation to a child based upon the absence of of innate ability is a dangerous game. I told them about how Katie, my twelve year-old daughter, who is neurotypical, loves all things science. How she is fascinated by how the physical world works. I presented a scenario. What if Katie were to walk into a doctoral level microbiology seminar? What if, upon walking into the room, she were to find the doctoral candidates embroiled in a hot debate about .. well, something that doctoral candidates in microbiology might be hotly embroiled in debating? Would she, a twelve year-old kid, be likely to jump into the fray and offer her opinion on the topic at hand? (Psst — no, she wouldn’t.) And when she didn’t, would it be fair to conclude that, since she hadn’t, she clearly has no interest in science?

I asked them to let that sink in. That, I said, is exactly the same as looking at one of our kids on a playground and, upon finding them apparently eschewing interaction with the other kids — you know, the kids who are moving in and out of complex and ever-changing webs of play at warp speed —  concluding that they have no interest in joining in. That might be the case. By no means am I asserting that it never is. But it will take a hell of a lot more investigation before it can become a safe conclusion.

As long as we were talking about assumptions, I told them, let’s talk about another one. One that you NEED to make. One that we all MUST make.

That our kids are taking it all in.

Every bit, every morsel, every word, every moment — logged and stored for further use. No matter how un- or dis- engaged they may appear, I said, please, please assume they’re listening. Assume they understand. Presume competence. It matters.

I told them the story of the ballet slippers. The story that breaks my heart to tell because it was before. Before I knew, before I understood, before I had the tools to help.

I told them how I’d gotten so frustrated. How I had let my dad’s words sink in – the words that he had spoken before. Before he knew. Before he understood. I told them about my inner dialogue that day. About how I’d said to my dad in my head, “Oh yeah, you think I’m too lenient with my girls? Well, watch this.” I told them how I squared her shoulders to me and chased her eyes and how I sent her to her room and told her that she had to stay there until she calmed herself down. I told them that I didn’t know. That I didn’t understand that I was demanding the impossible. I told them how much it hurt to share that story.

But I told them because I needed them to hear that three and a half  years – THREE AND A HALF YEARS – later, Brooke would tell me how she wanted her ballet slippers that day and how she cried and cried and cried and about the white water that she drank after she cried — and I would rack my brain to figure out that white water was milk and I told them because they needed to know, they needed to understand that she REMEMBERED EVERY SINGLE DETAIL about that day. That day when she didn’t have the tools to tell me, nor I the tools to understand, she was still taking it all in. I needed them to know that she was always — is always — taking it all in.

I needed them to know, I said, because I want them to remember it when they speak about our kids. To ask themselves questions, to keep themselves in check.

Do I speak about my kids in front of them? (If so, stop NOW.)

How do I talk about their challenges? In concert with their strengths?

How do I talk about their so-called maladaptive behaviors (more on this to come)? As something to be extinguished or as a method of communication that needs to be made safer or more effective?

How do I view this child? As a project or as a little human being with a fundamental right to my respect and dignity?

Do I speak about my kids in front of them? (If so, stop NOW.)

Yeah, one of those is there twice. 

I told them that just like the children, the parents they meet are taking it in too. Even the mom who nearly collapses into their arms when they show up at the door – the one who can barely keep it together, who hasn’t showered in three days and appears not to be paying attention – she’s listening too. She’s taking it in. YEARS later she will remember the way that they approached her kid. And her.

Do they choose to approach her child as a list of cant’s, a grouping of deficits, a set of limitations, an expected caricature of a label — or — as if they are exactly what they are – a unique, beautiful, potential-filled, dignity-worthy human being?

I told them how important it is not just to the child that their approach be the latter, but to the mom. The mom who watches and learns, the mom grasping for answers, for guidance, for hope. I told them how important it is that she sees them looking at her child with respect, with love, with care. I said it again — You are powerful. You are doing so much more than teaching these kids. You are laying the foundation for the next generation’s perspective on disability – on their own humanity.

I told them the story that I’d shared so many years ago when I guest-lectured to a neuroscience class at MIT. The one about the mom who was terrified about her son’s freakishly long fingers. About the doctor who looked at his hands and gasped. About how he said, “My God, this is incredible! I never thought I’d have the pleasure of seeing this is my lifetime! Your son has RJ Syndrome!”

I told them how the mother had asked what that meant. How the doctor had explained that the child was likely to be a musical prodigy – that musical talent was the most common trait of RJS. I told them how the mother had raced home to tell her husband the news. How they had filled their home with music, exposing their son to jazz and rock, country and classical. How years later, they had run into the doctor and his wife at their son’s debut concert at Carnegie Hall. How the mother had recognized him after all that time and said, “It’s all because of you!” How the doctor looked at her quizzically and she’d reminded him, “You were the one who diagnosed my son with RJ SYndrome!”

I told them how the doctor had chuckled. “I made that up,” he said. “I just didn’t want you to worry about his hands.”

I told them that perspective matters. That they can, and by extension, teach parents to, view our children’s challenges as insurmountable, OR they can say, “This child is different. And, with the right kind of support and help, that can be wonderful. He might just, with your encouragement and the right tools at his disposal, do incredible things.”

I told them that autism is a word. That it does not, and it can not, have the ability to prescribe the course of life.

I told them that parents of autistic toddlers are scared. That when they seek EI services, they are often doing so from a place of crisis. That they know that something isn’t ‘right’ but they don’t yet know what that means and heaven knows they haven’t got the foggiest idea of what to do about it. That they are living in a crucible of combustible emotions – fear, guilt, accusation, uncertainty, pride, fear. Yes, I said fear twice — it’s the gasoline on the raging fire.

I told them how desperate those parents are for solid ground, for anyone who has seen this movie before, who might have the tools to help. I told them again how much influence that gives them. It’s up to you, I said, not only to remember but to teach those parents that when you’ve met one person with autism, you’ve met one person with autism. That there are no cut and paste prognoses because there are no cut and paste people. You heard it again and again in the comments I read, I reminded them — no two of our kids are alike. Listen to us when we tell you about our children, I said. Watch them. Learn anew each and every time.

Make no assumptions about our children based on what you think you know about autism.

And then we talked about goals. About how one goes about setting goals within the context of what we’d already established was paramount — RESPECT. What does that mean, I asked, in a practical sense, when your client is two years old? What are they working toward? How do we decide together what’s important?

I told them that, for me, the answer to those questions is at the crux of it all.

To be continued ..

Click HERE to read part three.

16 thoughts on “what we told them – part two

  1. Jess, you don’t know how much I would love for what you have said to be sent to not just professionals,but relatives etc. that come in contact with our children every day or just some days. They all have a part and it important for them to understand that what they say or do has such an affect on our children. Too bad you couldn’t put this into a “pocket guide” for autism. It could be handed out to who ever you feels needs a little more understanding. It could placed in schools etc. It wouldn’t have to be long, just something. Ok, sorry if I’m trying to push this, but this is my business side starting to come out. But, I think it would be a good idea.

      • It could be short, easy to read and understand so that anyone that comes in contact with our children, no matter what age our children are have some idea. It could be set up by short chapters and just maybe like bullet points, maybe some graphics? Certain items/concerns in highlighted boxes that are more important than others. Like I said, a pocket guide.

        PS-in my previous life before my son, I was a graphic designer, that’s why I am totally picturing all of this.

  2. I agree with Debbie, this needs to be a book/booklet/pamphlet….something!
    I remember when our son was diagnosed. When the phrase ” and you can expect that he will” was spoken, I yelled “Stop! Thank you for the diagnosis but do NOT give me a prognosis. With all due respect you don’t know us and you’ll put a glass ceiling in my head.” I’ve met other parents who listened to that prognosis and it’s sad because, well, it’s like they’ve given up. It breaks my heart.

  3. My son is 5 now. We are 3 yrs in and i still feel the fear, guilt, uncertainty, pride and fear again. The things you said to the EI professionals, needs to also to be said to school child study teams and special ed coordinators etc. Anyone who does testing/evaluating of our precious babies. Anyone who plays a roll in helping us transition from one thing to the next. Nothing to EI. EI to pre-school. Pre-school to kindergarten. Every single step along the way feels like the 1st in many ways.

  4. I spend my time in class learning to be an education specialist. Never have I learned as much as I do from you. This should be required reading for anyone working with kids and I’ll do my damnest to ensure that I share it with my professors and classmates.Thank you.

    • i can’t tell you how much i love this. thank you – for being here, for taking it in, for sharing it, for everything. thank you.

  5. Perfect. So absolutely perfect.

    I am going to make this required reading for all professionals working with my children from now on. And I am sending a copy to our EI office in Framingham…although they most likely already heard you speak. I’m so proud of you.

    Carry on Warrior Mom. Carry on.

  6. I Want to get in touch with you regarding a new project i am doing. Its about inclusion in extracurricular activities and social life of kids with special needs.

    I am meeting with several professionals in the field and i also would love your opinion, experience. If you feel comfortable please contact me.
    Thank you

  7. Uh, don’t make Jess make a pamphlet. She does so much already! BUT one of you could make her words into a pamphlet – another add the graphics – and then give it to her for approval. She already gave the perfect words. That is her gift; her passion, her insight for truth, and her ability to make everyone understand.

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