role models


Visiting with Kate


“Don’t worry that children never listen to you; worry that they are always watching you.” – Robert Fulghum

Later, I would talk with my friend Jess from Diary of a Mom, about my meeting with Ibby, trying in rapid fire succession to remember, process, and spit out every bit of new insight I had gained. I would mention that Charlie had not exactly enthusiastically participated in the process and that I worried I was fooling myself that he was ready for this.

She asked me to step back and imagine for a minute what it would have felt like for me, as a kid, if my parents had brought a lesbian couple into our home. If they had casually introduced me to Sue and her partner Jane. She asked me to think about what that would have felt like for me? How that would have changed things for me? Even if I never approached those women with all the questions burning inside me. What would it have been like to just know they existed and to see them as a normal part of our world?

The questions took me back to that feeling, that desperate, lonely, feeling of being a broken version of everyone else around me. I remember how it felt to never have a character in a book, movie, t.v. show, or a song on the radio reflect who I was. I remember the feeling of looking around and simply never ever seeing myself.

Community Means A Lot Of Things — Outrunning the Storm

We can’t always create the physical community that we yearn to have for our kids. My friends and I half joke about moving to our own island – a place where our children’s challenges would be understood and accommodated and their strengths and talents celebrated. A place where, with enough of us gathered around the campfire, their differences – and ours – wouldn’t seem so different after all.

Alas, island living isn’t in the cards, so instead we continue to doggedly educate those around us, and try like hell to find the people in whom our autistic children might recognize themselves. To offer them up as proof that, despite their lamentable lack of (obvious) visibility up until very recent times, there is life (and fulfillment and joy and well, all those other things that come with life) after childhood for autistic people.

For so long, people with developmental disabilities, particularly those more severely impacted by them, were wholly segregated in institutions and as such, hidden from view, as a matter of course. The few who were not forged a singular path in society, writing their own maps as they went.

Life is different, thank God, for today’s generation of children. And not just because we have begun to understand how desperately important societal inclusion is for our survival, but also because, thanks to the wonder of the Internet, we are nearly all, no matter how unique our circumstances may appear, able to find and connect with someone else somewhere in the world whose experience is similar to ours.


Brooke and Becky

We are sometimes even blessed enough to bring those people out of the ether and into the brick and mortar of our daily lives. On those rare and glorious occasions, we begin to create a world in which our children grow up seeing people like themselves. Understanding that their differences are also commonalities. That there are communities that await them with open arms and hearts. That they are not alone.

It’s not always easy. While parents might make a connection, we can’t assume that our children will experience it in the same way that we do – that there will be some immediate spark of recognition, of understanding, of kinship. There might be, but just as, if not far more likely, there might not.

Autism is a vast landscape. Imagine being in Europe and a Frenchman introduces you to someone and excitedly says, “Voila! A travel companion for you! He’s American too!”

You might at first be relieved as you imagine someone who speaks your language, who shares your customs and value system, who gets you. Or not. Because not all Americans speak English. We sure as hell don’t all share the same customs or values. One look at the Tea Party clashing with the Blue Dog Dems will remind you that we definitely don’t always get each other. And we may have very, very different travel plans while visiting Europe.

Screen shot 2013-08-01 at 6.56.50 AM

Me and Ari Ne’eman in the goofiest picture ever

Some time ago, I watched Brooke, who was first diagnosed with Classic Autism and later with PDD-NOS, interact with a teenage boy with Asperger’s. She was playing her favorite game on her iPad and he was looking over her shoulder as she did. He was too close – invading her preciously guarded space. He asked her about the game, speaking fast, his words overlapping. He asked her what her high score is and how long she’s been playing and what level she’s reached.

She does not know, nor have any desire to understand, that the ever-changing numbers in the top corner of the screen have meaning. She doesn’t know what a level is. She couldn’t care less how long she’s been playing, nor does she have any interest in talking about a game. She just wants to play it and watch the guy on the screen jump from rock to rock. She was frustrated and overwhelmed by his questions and he appeared confused by her inability to answer them.

So, yeah, there might be some feeling of comfort in the recognition of shared differences on some level, but to think it automatic is to forget (or disregard) just how expansive the umbrella of autism really is. Just because we’re both American doesn’t mean I want to go to Italy with you.

So do we give up? Um, no.

Relationships can’t be forced. They may or may not happen organically, or with some facilitation and support. But either way, who our friends, as Brooke and Katie’s parents, are, matters.

At the dinner table we talk about the autistic people that we know — just as we talk about the gay people and the straight people and the people who are verbal and the people who aren’t. We mention conversations, virtual or otherwise, that made us think or made us smile. We talk about their accomplishments, the interesting events of their lives. We talk about how much we value their friendship. Just. Like. Everyone. Else.

The fact is that even if these people are not actually breaking bread with us at our table, our respect for them is always present. It’s obvious in our conversation. It’s threaded through our actions. It’s in the fabric of my children’s lives.

Because the alternative is this.

… that feeling, that desperate, lonely, feeling of being a broken version of everyone else around me. I remember how it felt to never have a character in a book, movie, t.v. show, or a song on the radio reflect who I was. I remember the feeling of looking around and simply never ever seeing myself.

Years ago, a friend came to my house for a party, Katie answered the door. “Mama,” she said, “there’s a man at the door. I think he just barked.”

I smiled at her. “Oh, that’s my friend, John, honey. He just says, ‘Woof’ sometimes. You’ll like him. Let him in.”

Years after their initial meeting, Katie has read all of John’s books. She adores him. And the next time she saw him, she woofed back.

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Katie and John

Somewhere, among all of the people who come through our door, both of our girls will undoubtedly find some in whom they see at least parts of themselves reflected back. But no matter what, even if they never find a perfect match, they will know that everyone – everyone – is respected in our home. Not because we say it, but because we live it.

There are so many things that I can’t give my girls.

But this — this I will, in any way that I possibly can.

Because I just can’t live with the alternative ..

… that feeling, that desperate, lonely, feeling of being a broken version of everyone else around me.

But please don’t get me wrong, while expanding our world has had its challenges, it is by no means a hardship nor a sacrifice. It is a gift.

Not too long ago, I added the following to Diary’s About Page.

I will be forever grateful to Brooke for unwittingly breaking my insular little world wide open. For allowing me — nay, forcing me — to see the beauty of difference, the light and color and startling depth of dimension in the full range of the human spectrum. For giving me the gift of a life well-lived thanks to the variety and the quality of the people in it. I owe her — and autism — more than I can ever begin to repay.



Hugs for Chloe

8 thoughts on “role models

  1. love the pictures, so great to see the way you’ve opened your heart and experienced all of these amazing people and interactions. when you share these moments, it helps expand our hearts as well.

  2. I kind of can’t believe that it’s 9:45pm central time and no one else has read this and posted just to express jealousy thatJohn Elder Robison is not just your vague internet friend, but was AT YOUR HOUSE. For years, you know, no big deal 🙂

  3. Pingback: “her S” Diary of a Mom: #AutismPositivity2015 | Autism Positivity Day Flash Blog

  4. Pingback: Джесс Вилсон: «Ее С» | Нейроразнообразие в России

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