Monday, October 19, 2009

Giving Thomas a voice that's cool

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?

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?

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.

What are your goals at DynaVox?

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.


That is VERY cool!! What a great thinker.

Hi Louise! Thanks for stopping by my blog. I was actually thrilled to find your blog a few days ago through Elizabeth..just hadn't commented yet!

I'm so glad you posted this interview. I remember that 2004 NYTimes article very well and was glad to get an update on Tom and to be reminded again what can happen when assumptions and conventions are challenged.

Looking forward to reading more!

i wonder how could my son get a hold of that....perhaps in my dreams maybe...yes everything that is good is always not available for son doesn't talk and may not be able to talk for bloorview it is very hard to get any services,they're very unaccessible and unreachable everything is only in the magazine...i just wish there is something like that technology that would not discriminate other kids with autism to try it on and available for all.i gave up the speech services that my son was about to received from bloorview bec for sometime they came to our house and they go without any word any calls just left us and when i called them even the manager didn't know what to do.....i don't know i stopped calling them...i know they have a new devise something like this technology but it is very very hard to apply for that...

Richard Ellenson is an amazing guy. Years ago, after I had Max and knew he was going to be disabled, I read an article about Ellenson in the New York Times magazine section and saved it. Coincidentally, a friend of mine is friendly with him, and when Max was ready for a communication device, she connected us. In the end, long story, we got a Dynavox, a decision I second-guess all the time; the Tango is an incredibly state-of-the-art yet completely usable device. I loved how the voice was a real little boy's voice; the Dynavox voice is robotic, and has been known to sound like a Russian peasant ("milk" is "meeelk"). Nice interview!

Hi Mary #1 -- Yes, I was surprised to realize that the earlier NY Times magazine was about Tom as well. I think Richard is a model for parents who want to effect change. He inspires me.

Look forward to hearing more about you and your son! Louise

Dear Mary #2

Thanks for your message! I’m sorry you’ve had such a struggle finding services and a communication system for your son. There are barriers to accessing and funding speech devices – and their use with children with autism is more recent.

Please call the general number at Bloorview and ask to speak with me, or send me an e-mail. If I know more about your situation, I can direct you to the appropriate person here who can address your concerns. Best wishes to you! Louise