understanding our differences

Yesterday, I was honored to step in for my friend Susan Senator and speak at a benefit for a wonderful organization called Understanding our Differences. UoD is a pioneer in disability education. Through a participatory curriculum for elementary schoolers, they live their mission of demystifying human differences, supporting inclusion, and building bridges to true and lasting friendships.

For me, the best part of the program is that while there are tons of non-disabled parent volunteers, the units are led by a person with the disability being covered. And that, I believe, is what it’s all about. So while I was thrilled to be a part of an event with some incredible folks yesterday, none, not even a local mayor, a superintendent of schools, nor even the dedicated folks who run the program, impressed me as much as the man who spoke right before me.

For five years now, Aaron Levinger has been standing up in front of groups of 50-60 elementary school kids at a time and talking to them about his experience as a person with Asperger’s. He’s been patiently answering their questions, some of which, he shared, are deeply insightful, some of which are the same as the one the last kid asked, and some of which are about the Red Sox. This is Boston, guys. We do love our baseball.

I never cease to be in awe of those who so willingly volunteer to make themselves vulnerable, to share their most personal challenges and intimate triumphs, all for the sake of creating a better world for our children. I was deeply honored to share the stage with Aaron yesterday.

When it was my turn to speak, this is what I said …

Years ago, when asked about my take on inclusion versus substantially separate education, I said the following:

We live in a district that prizes inclusion. And as a rule, I’m all for it. In my opinion, inclusion – educational, societal and damn near any kind you can think of – benefits everybody involved. BUT – big, huge, enormous BUT – ONLY IF IT’S DONE RIGHT. Otherwise, it can be pretty seriously damaging to everybody involved.

Inclusion doesn’t – can’t – mean throwing everyone in a room together and hoping for the best. In order to work, inclusion has to be thoughtfully designed. It must be painstakingly planned and executed. It must be FLEXIBLE and agile – constantly able to evolve and change as the needs and skills of those involved evolve and change. It must be a living, breathing organism and everyone, EVERYONE must be invested in making it work.

As parents, we often think of ‘everyone’ in the school system as every adult in the district. And while it’s true that we need teachers and administrators and secretaries and custodians to be on board, what we really need, above all, are the kids.

Seven years ago, I wrote about something that had happened at a birthday party to which Brooke,  my autistic daughter, who was then in kindergarten, was invited along with her older sister, who was in second grade.

The kids were happily crammed into a crowded table at their classmate’s birthday party. They were carefully painting their plaster sculptures, chattering and bustling, sharing paints and cups of water for cleaning brushes.

Brooke was hard at work painting her plaster clown. From the looks of it, not a single color on the palate had escaped her brush.

From a couple of seats away, Katie glanced down at her sister and called out encouragement. “Brooke, you’re doing a great job!”

A little boy across the table from Brooke chimed in.

“Yeah, you’re doing a great job making a mess, Brooke. Nice mess. What a great job. You’re just dumb.”

He barely finished the last sentence before Katie angrily shot back.

“Stop making fun of my sister.”

“But she doesn’t even pay attention,” he said. “Watch this.”

He looked right at my baby girl, diligently painting her project and he shouted, “Hey Brooke, DOYNG!”

She didn’t flinch. She kept painting.

“See?” he said, looking around the table at his captive audience. He looked smug, having proven his point. “She doesn’t even pay attention.”

I took a step closer, but a clear, determined voice from across the table stopped me in my tracks. I know that voice better than I know my own, but there was an anger in it that I didn’t recognize.

“STOP IT!” said the voice. “STOP MAKING FUN OF MY SISTER.”

“She doesn’t even know,” the little boy said flippantly.

The voice got stronger, clearer. “It doesn’t matter if she knows it or not. STOP making fun of her. You don’t make fun of ANYBODY. EVER.”

I felt like a raw nerve.

I was proud.

I was angry.

I was torn to shreds.

For Brooke.

For Katie.

For all of us.

Hot tears ran down my cheeks in the car on the way home. My stomach churned with the bile of anger and fear. Is this what happens at school? Is this Brooke’s life when we’re not around? I wondered.

The kids are getting older. They’re seeing the differences. They’re seizing on one another’s vulnerabilities. It’s what kids do. Hell, it’s what adults do.

He may be right; she may not know. She may not understand. I’m not convinced. She sees so much more than we think she does. But even if she doesn’t know now, she will. Then what?

Can I protect her from the sting of ignorance?

That little boy is not a bad kid. Not by a long shot. Later in the party, Brooke yelped sharply when the kids were crowded into a line. He was the first one to ask her what was wrong.

I’m debating calling his mom tomorrow. If I do, I’m going to start the conversation by telling her that she’s got a kid with a heart. I haven’t yet decided if it’s the right thing to do. It would not be an easy conversation.

But how else do we do this? If not by changing perception and talking to each other – building understanding one tough conversation at a time, then how?

Seven years later, I can tell you that the answer is right here, in this room. It’s an open conversation with our kids. It’s perspective-taking and the freedom to ask questions. It’s hearing about disability from those who live life through its lens. It’s Understanding Our Differences.

Years later, that kid, the one who had been convinced that Brooke couldn’t even register his insults, became one of her favorite people at school and she his. They had a routine that they did together from the viral video, “Charlie bit my finger.” They did it every time they saw each other. Her aide told me that he sought her out at every opportunity so that they could do their thing. Because demystifying difference, seeing disability not as a barrier to friendship but a natural part of the human experience changes everything.

Last weekend, we threw a thirteenth birthday party for my girl. The next day, I wrote the following on Diary’s Facebook page:

Something incredible happened at Brooke’s party last night. And it was, well, let’s just say that I’m still processing it.

As you know, Brooke planned her party, including the “surprise” at the beginning. (My girl loves a surprise party, but only if she knows it’s coming, so she plans her own. It’s kind of genius.)

Anyway, my favorite part was when, after the kids shouted, “SURPRISE! HAPPY BIRTHDAY, BROOKE!” upon her (meticulously planned) entrance, she put her hands in the air and said, “Wait, what’s all this?” but that’s neither here nor there in the story.

Before the surprise, while she was still holed away in her room, we had the kids (at her request) make signs to hold up for her when they yelled. On them, I suggested that they write something that they did with her that made them laugh and that they thought would make her laugh to read.

And they did. Oh, they did. They each began to write (and share out loud) the scripts that each of them have with her. Those very same scripts that we’ve been told time and time again to ignore or reshape – the ones we’re all so often told (falsely) are devoid of real meaning.

And as they were writing them on the signs, they began to compare notes. And then grill her older sister  Katie – asking if she knew the origin of “POLKa Dot!” or “Throw it back to Sammy!” or “Gonna eat a lot of peaches.”

As Katie did her best to tell them where the scripts had originated, one girl said, “Wait, she says this at home too??” and Katie laughed and said, “Seriously? This is my life.”

When Brooke came down and after they’d surprised her, they started doing the scripts with her. And it became this game in which the kids were trying to one-up each other with who knew more of them.

And then they began to do them as a group – fourteen voices reciting these snippets of dialogue from movies and songs and Brooke’s imagination – these tiny yet sturdy threads of connection with the world around her and all of these kids knew them and enjoyed them and as I stood at the top of the stairs I heard them saying, “Brooke is so much fun,” and, “You guys do that one too?” and above all, I heard my girl, giggling and squealing and so, so happy. She was in heaven.

Eleven kids came to the party (along with Brooke, Katie and our cousin, Hannah). Three were kids that she met this year in chorus.

I have a confession. I was nervous about them coming. I was nervous about how they might react to Brooke’s made-up party game or her insistence that they watch the only movie in her repertoire – Alvin and the Chipmunks. I was nervous about their reaction to my thirteen year-old’s Hello Kitty / Dora the Explorer / My Little Pony cake or her contrived “surprise.”

I shouldn’t have been.

NT or neurodiverse, my kid finds her people.

They’re the ones who script with her and laugh with her and who, without asking what she’d like, buy her magic markers and coloring books and My Little Pony tote bags as gifts because they already know what she loves – because they see her. They SEE her.

I desperately wish that all the people who have told us to ignore, discourage, reshape, reframe, and replace Brooke’s “meaningless” scripts could have been there last night. To see just how much meaning they have. And to hear what it sounds like when fourteen voices bring them to life in celebration of the kid who has used them to connect with people who love her – exactly as she is.

It was an incredible moment and one that couldn’t have happened in a vacuum. When Broke was headed to middle school, we knew that the program she is now in was going to be perfect for her. It’s a substantially separate program for students on the autism spectrum and serves her needs to a tee. Sadly though, it isn’t housed in her home school. We were terrified of putting her into a middle school full of brand new kids. Let’s be honest, middle school can be torture under the best of circumstances, and these certainly were not the best of circumstances.

But these kids, the ones she’s met in advisory and chorus and in the musical, are the ones who are competing with one another to see who knows more of her scripts, who are coming to her party and shouting surprise and speaking the language that they’ve created with her.

THAT is the work of Understanding our Differences. That is what happens when we raise our kids to have a stake in inclusion, to see each other as fully human, to respect and revel in our differences.

And we should celebrate that moment. That perfect example of progress and friendship and the celebration of our shared humanity. But so too, we have to acknowledge that there is more work yet to do.

Three days after the party, I was talking to the mom of one of Brooke’s autistic friends in another school in our district. Her son had been returning to class from PE that afternoon when another kid stopped him in the doorway, blocking his entry. When he asked to pass by, the kid said no. And then he called him a retard.

No child – not yours, not mine, not Brooke’s friend, should ever know the sting of that kind of ignorance, that kind of fear, that kind of hurt.

After Brooke’s party last weekend, Katie told me about a guest asking her whether or not she thought that Brooke could understand something they’d been talking about. Katie was offended on behalf of her sister. It was something so simple, she said, what must he think of her if he really thought she couldn’t get it? After a moment, she stopped herself. “He seems like a really nice kid,” she said. “He just needs to be educated about autism. So he’ll know that not being able to express something is different than not getting it.”

Understanding our Differences provides that education. And in so doing, changes lives. It transforms kindergarten bullies into fifth grade friends. It creates an environment in which everyone can thrive. And it nourishes the living, breathing organism of inclusion. Not just in our schools, but throughout our communities.

Your support for this vital work is so very much appreciated. For your sweat equity, your financial support, your contributions in myriad ways to the progress to date and to the work yet to do, thank you.

And thank you for having me. It’s an honor to be a part of Understanding our Differences.

2 thoughts on “understanding our differences

  1. This was a magnificent post, Jess! It was wonderful reading about the party again and Brooke’s phenomenal ability to make friends from so many walks of life. I could not be any prouder of Brooke! I’ve always said, “leaps and bounds”! Brooke majors in them.

    Love you,

  2. This is wonderful. Baguette is in TK, at a school where the special ed teacher is really devoted to her, and the office staff reaches out to her, and the principal works to draw her out in easy ways. But what really touches me is the kids around her, who greet her and encourage her and want to come to her birthday party. One of the boys in her class brings her gifts and notes and tells her she’s his friend and he loves her.

    The teachers and administration are incredible. But it’s the kids who move me to tears.

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