Mama and Dad

Two weeks ago I wrote about how Ben had deleted the Proloquo communication app off his iPod. We didn't have a recent backup, so I spent hours recustomizing it – deleting unnecessary vocab, moving categories around to make it easier to navigate, creating new folders and words, syncing new photos so that Ben's favourite Star Wars area grew to epic proportions.

We had just started to use the characters in those photos as a basis for writing simple sentences. Ponda Babba's face looked like a spider and Greedo looked like a giraffe because he had the same little horns on his head.

So last night I was looking forward to Ben choosing another figure that we could write about. Instead, he brought me the iPod to show me that he had deleted the Proloquo – AGAIN!

I kept opening and closing my eyes, unable to fathom that the kid had done it again. I was furious – knowing I'd have to start back at square one reprogramming the device – and I also felt stupid. Why did I assume he wouldn't delete the software again? My kid is impulsive and the process is simple: You hold down the owl icon on the app page until it shakes, a box asks you if you want to delete, and you click it.

As I contemplated the task of ONCE AGAIN redoing the hours of work I'd spent over the last couple of weeks, I couldn't help thinking about the time I've spent trying to help Ben communicate over the years.

There were eight years of speech therapy, which sometimes saw him going four times a week. Multiple times we drove the 10 hour trip from Toronto to New York – Ben's toddler sister in tow – so he could be seen by specialists using approaches not available locally. Sometimes we'd drive the 10 hours one day, have the consult the next, then hop back in the car for 10 hours back. We were on a mission, and if it was going to help Ben speak, we would have driven to the moon.

I spent exorbitant amounts of money on speech kits. There was Easy Does it for Apraxia and the Kaufman Speech Praxis Treatment Kit, by Nancy Kaufman. We took Ben to see Nancy twice in Michigan. We also saw Sarah Johnson – who developed the oral-motor approach to therapy – and a few of her staff who lived in various parts of New York State. I bought enough oral-motor horns, straws, bubbles, tongue depressors and toothetes to equip a clinic and did the exercises religiously. We visited Dr. Shprintzen in Syracuse, an expert in surgery to close a floppy velopharyngeal flap, one of several structural problems Ben had, and a team of specialists at the NYU Medical Center.

Early on, we put picture symbols everywhere. When we began sign language, I remember cutting out hundreds of picture symbols with signs, taking them to Grand and Toy to get them laminated, then cutting the laminated ones out again. There was sign-language immersion camp and a dynamyte voice device – which I first acquired as a loan from the distributor because our therapist wasn't willing to authorize it. That changed when we videotaped Ben using it and were able to prove he was capable. However, the dynamyte was heavy and couldn't travel with Ben – who was mobile but tiny and weak. The technology was archaic and it took so long to move through the deeply embedded pages of vocabulary that it was easier not to use it. But still, I spent hours and hours programming it.

The AAC therapists didn't believe in sign language and advised strongly against it. A developmental pediatrician convinced us it would be useful for Ben, and it was. But he was still limited by his weak, uncoordinated hands and according to one psychologist wasn't smart enough to become more fluent.

When he was a baby, he babbled exuberantly and we always thought he would speak early. He had many word attempts in his first year. “Bo” was bottle and “'Ben go bo” meant “Ben go bottle.” His beloved red Sesame Street character was pronounced "Elma.” A speech therapist noted that he referred to his favourite furry creature – “owl” – “very clearly,” and an assessment at age two said he was at an 18-month speech level. But once the severe, recurrent ear-infections started – and with his hearing loss still misdiagnosed, despite frequent hearing tests – he lost it. I used to go back and look at the lists of words he'd said, unable to grasp why they had vanished.

When Ben was about four, it hit me hard that he might never speak. I went back to church and I asked the congregation to pray for Ben, who we were taking to Michigan to see Nancy Kaufman. An old man turned to me and said: "Maybe God doesn't want him to speak. Have you ever considered that?”

The message that Ben wasn’t destined to speak came again at age seven when we were doing a second week of intensive, twice-daily therapy with the Michigan therapist. “I don't think Ben is ever going to speak,” she said during a morning session. “I don't think he'll ever get past word attempts that you understand but that others don't. I think his brain is wired differently.”

I went back to the hotel room and I got under the covers and I wanted to die. But I couldn't, because we had another therapy session scheduled for that afternoon and I had to keep Ben motivated and up. I didn’t have time for grief, because every second of the day was a therapeutic opportunity we couldn’t afford to miss; the window for intervention was beginning to close.

I didn’t listen to the man who suggested God didn't want my son to speak, and I didn’t listen to this speech therapist.

Last night, when I realized Ben had deleted the Proloquo a second time, I wondered: Is the universe sending me the same message?

Maybe Ben deleted the software because he doesn’t want to use it, plain and simple. While it’s freeing for him, it’s also challenging.

"Ben, I've spent hours fixing this machine for you,” I said. “I did it because I thought you wanted to use the iPod to communicate!”

"Eh!" (Yes!) he said vigorously, nodding his head.

Sometimes I wonder if there is some larger message at play. Sometimes I can't help imagining a higher being watching my never-ending attempts to help Ben communicate, and shaking his/her head and laughing: "She just doesn't get it, does she?"

But I can't stop. I don’t have a choice. I have to get the software reloaded at Bloorview today, and I have to start recustomizing again. Because it's Ben's only opportunity to increase his communication – whether he's capable of using it as adeptly as I'd hope and whether he wants to use it – or not.

Later last night Ben tottered like an old man down the hall, almost upended by the giant Pixar movie encyclopedia he was carrying. A bony growth inside his hip is pushing it out of its socket and causing him to limp. He’ll be having major surgery in two weeks to remove it.

If only life was a Pixar movie, where friendship saves the day, being different is okay and the good guys eventually win out.

“I’m sorry,” Ben signed, and then he signed that he wants me to be happy again. He hugged me.

I don't have a choice on that either.

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.