Mama and Dad

“Architecture is evangelism.” I heard it said in the context of church buildings. The speaker was making the point that a ramp at the back of the sanctuary might comply with ADA standards, but it isn’t exactly welcoming to individuals in wheelchairs. I’ve been trying to think of an equally pithy way to state this truth for the rest of the world. “Architecture sends a message” doesn’t have quite the same ring to it, but the point stands. The way our buildings, homes, and public spaces are constructed says everything about which people we want to see in those places.

Last week, my mother and I took my kids to our first Boundless playground, a playground intentionally designed to include children with a variety of strengths and abilities. I noticed the swings first—a few that looked the same as every other playground, and two with full back support and harnesses, big enough to hold an elementary-school aged child. Our daughter Penny, age four, has Down syndrome, and I remember the days when she could only spend 60 seconds in a swing before needing to get down. That low muscle tone made it hard to hold her head up, so the enjoyment of swinging was limited by the design of the swing. At this playground, those bright yellow swings stood out as an invitation for any child to swing with abandon.

And then I noticed that the path up to the slide was quite wide. Wide enough, in fact, for a wheelchair. Along the way up, we discovered “stations”—Braille on one plastic board, a xylophone elsewhere, knobs and different textures lining the walls. Penny and William, our 18-month old son, didn’t seem to notice anything different. They just thought it was fun to slide and swing and seesaw, play peekaboo, run and climb and spin.

A few years ago, it took courage for me to take Penny to a playground. I wondered what questions I might get, particularly, “How old is she?” and then a surprised look when I said “Two,” and they watched her take those tentative early steps, watched her tiny body navigate whatever treacherous structure loomed ahead. I worried about older children knocking her down. I wasn’t even sure she would have fun, since she couldn’t run and jump and climb like other kids her age.

Now, Penny can run and jump and climb. There are still things she can’t do, but she’s old enough now that most playgrounds are pretty fun spots. And if I’m honest about it, even in this inclusive setting, a child in a wheelchair would run into some barriers fairly quickly. She could wheel herself to the xylophone, but she couldn’t get all the way to the highest slide without assistance. She couldn’t get up and ride on the bouncy horse or sit on the giant seesaw by herself. Even a “boundless” playground can’t remove all physical limitations.

So for a moment, the cynic in me kicked in. What’s the point of this place? Penny can have fun on most any playground these days. And it would still be tough for some kids to navigate this one. But the purpose of this space goes beyond physical barriers. It tackles social ones, which is more than half the battle. Because what this playground said to me was, You are welcome here. And so is your daughter, who has glasses and a physical therapist and an individualized education plan. Your daughter, who has by now introduced herself to everyone else on the playground with, “Hi, what’s your name? Want to play?”

Architecture sends a message. In this case, thankfully, the message was: Come on in. Play with us. Stay for a while.

In 2003, Richard Ellenson (left) convinced the City of New York to design two classrooms that would allow his son Thomas (right) and seven other children with disabilities to take part fully in kindergarten at a public Manhattan school. Thomas has cerebral palsy and doesn’t speak or walk.

A year later, frustrated by technology that didn’t support the fluid communication he wanted for his son, Richard sketched a product more in keeping with his creative instincts (he owned an ad agency at the time): it was sleek as a video console, spoke like a kid, with all the right inflections, and had a built-in digital camera.

Three years later, that napkin sketch became the Tango, a device Richard brought to market with a company he founded called Blink Twice. This past summer, Blink Twice merged with DynaVox – the world’s largest maker of augmentative and alternative communication (AAC) products – and Richard became the company’s chief vision officer.

We talked about parenting a child who is non-verbal and why he developed the Tango.

Me: How did you react when you first learned Thomas would never speak?

Richard: When he was about two years old we were at his neurologist. He looked at Tom and said “maybe this child will walk one day.” To me, I was never that athletic and that wasn’t the most important thing. “Will he be able to speak,” I asked? I’ll never forget his words: “I don’t believe speech will be his strong suit.” I talk a lot, so for me that was a very hard thing to hear. At that point in my life, I couldn’t envision other ways of communication.

Me: How did lack of speech affect Thomas?

Richard: If you can’t speak in real time, people tend to not include you in real time. To be really good friends with someone who doesn’t speak verbally, you have to learn an entirely new way of communicating, and not everyone will do that. Tom has good friends, but it’s been harder for him to make them.

Me: What are common misconceptions about children who are non-verbal?

Richard: Parts of the human spirit are universal and parts are idiosyncratic. With most people, we overstate their universality, but with the disabled we focus more than we need to on their differences. They need to prove they’re smart, prove they’re fun, prove that they understand what someone is saying. People talk slower or louder to someone who’s non-verbal and generally assume it will be more work to interact.

All of us want to find the things within us that make us special, but the challenge is more daunting to people with disabilities because others don’t take the time to engage with them. You have to be Stephen Hawking before people will sit up and take notice.

The thing I find most tragic is that we as a society have been unable to find effective inclusionary environments. We haven’t found an appropriate teaching model for children of different abilities, so students with special needs are often excluded from a general curriculum and put in a separate environment. Yet in every high school, one kid is going to go to Harvard and one is going to community college. Their experience is not so different from that of people who are typical or have special needs and yet we don’t make that distinction.

Me: Why were you motivated to design the Tango?

Richard: The devices at the time were focused on building sentences. To a guy in advertising, that doesn’t equate to communication. Communication is a much richer notion that involves engaging someone in real time. It involves inflection, prosody, speaking in a language and a voice that people relate to, showing off a sense of coolness, being up to speed on your world. I was an advertising creative director, so unlike those with a more academic bent, I’d always focused on the fact that we’re as affected by image as we are by substance.

For me, what was really important for Tom was the ability to be fluid in communicating and to approximate a pattern that feels familiar to others – to give him a way to be engaging out of the box, to show off his charm and his cleverness, to express his needs, his wants, his likes and dislikes, as quickly as possible. Once that foundation was built, then he could focus on the task of generating sentences and growing relationships. When devices made generative language the first step, I found it was such a large step that most people fall off.

Me: What are the key features of the Tango?

Richard: I think what everyone immediately responds to is that it looks really cool, it has great voices and a built-in camera. It was really important to bring that message to the field of AAC: we need to get cooler. We need to worry not only about what the speaker thinks but what other people think – about what motivates communication. As they say, it takes two to tango.

The Tango has 4,000 phrases that were developed by observing kids and teens and adults in real conversations. Much of what we say in life is repetitive. Typical people have the rhythms of conversations in their ‘database.’ But if you’re non-verbal, most devices require you to create those phrases over and over again. That makes it much harder for others who need to wait to listen.

Me: What advice would you give a parent whose child is non-verbal?

Richard: We all get judged before we ever speak a word, so be aware that the same thing is happening to your kid and the bar is higher. Make sure your child has visual cues around them in everything from their clothing to their toys, and that language is easily available to them on whatever communication system they use. If your child doesn’t have something with their favourite baseball team or rock band on it, people will assume they’re not interested in sports or kids activities.

If your child gestures, encourage them to use eye gestures and smiles to connect with people, so people are aware that your child is aware.

Make sure people learn to wait for your child to communicate. Let them know it’s not frustrating for your child to use technology and how much their interest means to your child. Keep it positive.

Evaluate your child’s ability to communicate. Do they use images? Can they use sentences made available to them? Can they generate sentences? Be aware of growth opportunities. You want to stay a step ahead so there’s a window where the child has variety.

Advocate for them to have more than they need – to have the best device available so they can explore and grow when they’re ready. To limit a child to low tech is often to limit their ability to find more within themselves.

But mostly, learn to respect a child’s desire to be a child. No teenager wants to talk with you. No kid wants to tell you about their day at school. Find what they’re interested in, and use that to motivate them.

Me: What changes in Tom did you see once he had the Tango?

Richard: When you have a Tango on your tray, you don’t look disabled, you look cool. Instead of “Oh, you’ve got this big device on your tray,” you’ve changed the conversation to “I’m cool” and kids respond to that. With the Tango, Tom’s expanded his magic bag of communication from a couple of gestures and words to phrases that are really intentional, to stories about his life he uses over and over – as we all do – to sound effects. People absolutely understand more of what Tom is interested in with the Tango. He’s considered one of the most popular kids in school. Tom has a lot of friends on Facebook. So someone will show up at our house and I realize Tom was on Facebook the day before e-mailing “I want to have a play date.”

Me: What was most challenging about developing the Tango?

Richard: The hardest part was walking into a field that evaluates things from an academic perspective and being someone who looks at things from a marketing perspective. The field was about building sentences, when to me it should be about your child building relationships. I saw communication in context. Why will people communicate? What will they want to listen to? How will my kid make friends?

Me: How do you feel knowing you’ve given your son a voice in this way?

Richard: It’s wonderful and humbling. I always felt it was a bit of destiny. I was an advertising person and focused on brand and perceptions, and while the AAC field had great thinkers, they weren’t always thinking about what the experience of AAC was for listeners. For me, every metric for success should be about what listeners are doing, not what speakers are doing.

Me: What are your goals at DynaVox?

Richard: My role is to work with the company’s many innovators to re-imagine what the world can be like when it’s full of successful AAC users. We want to build devices that provide not just communication, but the foundation for a change in perceptions. So if a person in a wheelchair with a device has a headline over their head that says ‘This is a difficult life,’ my vision is that the headline becomes: ‘This is an interesting life. This is someone who has insight and fun. This is someone worth knowing.’

Thomas and his family were the focus of a 2004 New York Times Magazine article – The Lessons of Classroom 506 – about inclusion.

Jennifer’s post about how traditional friendships are not possible for her son Owen got under my skin, manifesting itself in a big knot about four inches down my spine.

I’m familiar with that knot, and it tends to flare up when the Momma bear in me is fighting an injustice that I know to be reality, but which I can’t accept.

As Elizabeth notes in her comment, there’s something taboo about the idea that disabilities could render a child incapable of friendship: “I've never seen it written…Those thoughts we of like mind share and never dare to write.”

At first I wanted to argue against this premise on the basis of semantics. Jennifer defines the word friendship in her post as an independent relationship that is reciprocal and voluntary. But does friendship have to be reciprocal? What if I “choose” to befriend someone who can’t actively reciprocate? Does that nullify the relationship?

And then there’s the notion of an independent relationship. Can a relationship be independent? Doesn’t that sound mutually exclusive?

I know what Jennifer means, that a conventional friendship has to be sewn and sustained by two independent children who can choose to participate over time, and do so without the support of others. The children need to be able to contact each other – in person, on the phone or online – and communicate. They need the language to understand and enjoy each other’s company without the intervention of others.

I guess we could argue that perhaps traditional friendship is not all it’s cracked up to be. Why not loosen up the definition to make it more flexible to children with special needs?

However, this line of reasoning merely distracts us from the painful reality that kids with severe disabilities in families like Jennifer's and mine don't have friends.

At our house, handfuls of children – friends of Ben’s siblings – traipse in and out. Ben (photo above) loves it when they’re around, and is sad when they leave.

He occasionally gets invited to a birthday party, though there have been years when not a single invitation arrived.

He’s cabbed to a school a terrific distance from our neighbourhood, and most of the students there are bussed from all over the city. We’ve tried inviting kids over, but visits need to be facilitated by us because of the communication barrier (Ben doesn’t speak and knows basic sign), and nothing enduring has occurred.

Wait! There was one typical boy from Ben’s previous alternative school who showed up at a movie theatre on his own last year for Ben’s birthday. And this summer, we made a breakthrough when Ben attended overnight camp. When we picked him up, every camper had a story about something they’d done with Ben. They seemed to genuinely know him and accept him as a friend.

At other times, we’ve invited every child from Ben’s segregated school class to a birthday party, and only one showed up. The teacher explained that when kids are bussed to school, many parents don’t take the time to drive their child to after-school events, or to reciprocate outreaches.

It breaks my heart when he stands at the window signing “friends – where?” and I don’t have one good reason as to why they didn’t come (or even RSVP!).

So as much as I’d like to argue that really our kids with significant disabilities do have friends, or have the same opportunities as our other kids to have friends, the reality is that they do not.

And while Jennifer may have reached a place where she can accept her son’s lack of friendships – because he does have meaningful interaction with family, paid caregivers and others – I have not.

That childhood could be friendless is inconceivable to me. My body rebels against the idea that a kid – any kid – can’t have friends.