How ideas about 'normal' speech silence children

By Louise Kinross

I read a fascinating story in Holland Bloorview scientist Barbara Gibson’s new book that looks at how cultural notions of what’s "normal" influence what we value in rehab.

The book is called Rehabilitation: A Post-Critical Approach.

The story was about a high school student whose most efficient way of communicating was to speak in a way that wasn’t intelligible by others—but which her mother could easily translate. The student was able to use a voice-generating device, but said it was slow, cumbersome and tiring. She only used it at school where no one understood her speech.

Which way of “speaking” is better? Using the voice device would give the student a higher score on a rehab test of “independent communication,” but the student said speaking with the support of her mother is much easier and faster. 

I reached out to Barbara and learned that this story was contributed by Gail Teachman, who worked for over 20 years as an occupational therapist at Holland Bloorview. She just completed her PhD in philosophy at the University of Toronto’s Rehabilitation Science Institute. Gail co-wrote one of the chapters in Barbara’s book.

Gail’s doctoral research involved interviewing 13 high school students who used alternative and augmentative communication (AAC) about what inclusion means to them. The term AAC is used broadly, to include voice devices, gestures, pictures, utterances and other ways of expression. Gail encouraged participants to communicate in their preferred modes and in any way they felt most comfortable.

“A lot started off wanting to impress me and show what a 'good' communicator they are using technology,” Gail said. “But once they relaxed into the interview, they more often relied on a family member as a communication partner and I was able to see how they more typically communicate.”

All chose to have a mother or sibling participate so that they could use speech or gestures, which their family member translated, to save energy.

“Even as a seasoned AAC clinician, I understood very little of their speech. This is not speech most people would understand at first. It was like having a door opened to a room that I had never been in because the person felt comfortable and the family understood just about everything the youth said. It was a privilege for me to see that these families have learned to understand their child’s communication in ways that are different but no less valuable. It was so rich and so moving.”

At the same time, Gail said, the teens and young adults noted that they can’t converse this way in public because “it’s devalued there.”

Ironically, many of these youth, who are labelled “non-speaking,” speak all the time at home, Gail said.

“One of the things I looked at in my research was why we put so much emphasis on what we call ‘independent communication.’ We could do so much more in our work to advocate for communicative competency as being a shared concept. That it’s not about changing the way ‘they’ communicate, but to turn it on ourselves and consider how socially we’re stuck in thinking there’s only one way to communicate: that approximating oral speech is the best way. Instead, we might consider our own ability to converse with people who talk in different ways.”

Gail said some great work is being done about communication as a shared concept at Communication Disabilities Access Canada. 

Typically, Gail said, people who use different ways of communicating have been excluded from participating in research. “It’s thought that they wouldn’t be able to respond to questions, or that their responses wouldn’t be valid. My research used the work of sociologists and linguists to argue that if a person is communicating—whether it’s with a device or facial expression or dysarthric speech or with a communication partner who understands them—their talk is no less valuable or true.”

Her research also found that using a voice device is devalued in society at large.

“I found that even when a person became quite competent at using a device, it didn’t mean that when they went to the mall they felt included. Participants told me: “People don’t stop, they don’t wait, and they don’t value what I have to say.” The technology itself can be intimidating and discourage interaction, Gail said. 

One young man who joined a wheelchair hockey league talked about how no matter how much training the coaches had, they talked to him like he was a little kid. He felt that because he used a voice device, they assumed that he wasn't very smart.

The youth in Gail’s study preferred to go places with a parent or support worker because it “helps them feel safe and able to interact in a world that is constructed for people who use clear oral speech. But that’s termed ‘dependency’ and is too often considered lacking in some way.”

She stressed how much we inadvertently limit youth when we overemphasize the value of independent speech. 

“It may take five minutes for someone to make a sentence on a device and that’s exhausting,” Gail said. “Without question, technology can improve the lives of children with communication impairments. But with certain questions they could turn to a communication partner and basically say ‘Can you take this one for me?’—and because of their shared history, the partner can help them get their message across more easily. As long as we hold up independent speech as the best way to communicate, we only allow ourselves to see a part of what that young person wants to share.”

Stay tuned for more on what high school students in Gail’s research said about inclusion. 

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I wish I'd seen the beauty of sign language years ago

By Louise Kinross

Last night was fun. I got to tell a story in American Sign Language (ASL) about a funny incident that happened when I was a teen. I was doing a test for a sign language course and we had to to tell a story about growing up. 

Mine involved my 16-year old self, my best friend, a bottle of rum that our old babysitter bought for us, and an encounter with the police late at night as we lay on the grass looking up at the stars.

In preparing for it I got to look up many signs on Handspeak, which is a wonderful site where you can watch video clips of different signs.

I also typed out my story, but in the word order that is used in American Sign Language (ASL), which differs from English.

When my son was young, I tied myself up in knots over whether to use signs in English or ASL word order.

"ASL is a language completely separate and distinct from English," according to this description from the National Institutes on Deafness and other Communication Disorders. "It contains all the fundamental features of language—it has its own rules for pronunciation, word order and complex grammar."

Instead of recognizing the beauty of ASL as a rich language that stands on its own, I was always translating signs into English and then fretting that it wasn't "proper English." How would this affect my son?

So, for example, to ask someone's name in sign language, you use signs that translate as "You name what?"

We ended up using ASL signs, but in English word order because we were also speaking at the same time we were signing.

This meant we were never fully immersed in ASL and deaf culture. 

We were, as they say, sitting on the fence.

I think this happens to a lot of families when their kids with disabilities are young. They are bombarded with different therapies, techniques and approaches and advice from professionals and other parents and just about anyone on the street who will chime in to give their opinion.

What if I make the wrong decision? What's the right decision? 

Meanwhile, all those years ago, in terms of communication, I was conflicted about whether we should use sign at all. It isn't generally recommended by therapists who prescribe augmentative communication (voice devices, picture boards etc). "No one in the community will be able to understand him," I was told.

And it wasn't something that my son naturally took to because of his weak fine motor skills. On the other hand, most of the "words" my one-year-old daughter had were signs she'd learned from us signing to our son.

When we were out and about I felt self-conscious about signing. I wanted to blend in like the rest of the young families in our neighbourhood. I still "cared" about what other people thought of me (ha ha, how times have changed).

We tried to do everything: sign, pictures, a voice device, years of speech therapy. 

There are so many value judgments about all of these things, and even value judgments about approaches within each area. 

Of course speech is the most highly prized, which can push parents like myself to pursue it for years and years, even though the child is not showing any functional gains (or maybe that was just me, maybe I just didn't see the light).

My son has chosen sign language as being the mode of communication he's most comfortable with, and that is most efficient. He's still limited in what he can express because of his fine motor issues, which means we can't get a really rich understanding of his thoughts. But it is his language. 

A few months ago a person who's helping us with life planning suggested that we needed to get on board with sign language in a bigger way. I think she was surprised at just how little signing my husband and I did (and our other kids, despite going to sign language camp for years, do none. It had stopped being "cool").

So my husband and I took a course and a couple of our workers did too (when our son was very young, we'd gone to an immersion program and also had weekly lessons from a tutor).

I adored my sign language teacher this time around. 

She told the most amazing stories that always had us in stitches. Part of it was how visual and dramatic sign language is. It's so much more than hand signs, it's facial expressions and body movements and sounds. It's often like theatre.

I began to see how full and fun this language was.

The other day we went by our favourite party shop and my son was very upset to see a sign that said the store was moving.

He was looking in the window when one of the staff came out. She recognized him as he loves costume gloves and has bought many pairs there. They were selling everything at half price before their move, and she said she'd found a box of gloves in the basement that she wanted him to have.

This was like Christmas for our son.

But what was so interesting to me was after we left, he signed: "New building where?"

He was asking me where the new store would be located.

What stunned me was his use of the sign for "building," which I hadn't seen for years.

In the last couple of months, since we've begun consistently signing with him, he's starting to string more signs together in a sentence, and to surprise us with signs. 

In the past, we've often expected him to express himself in silent sign while we, and everyone else around him, "talk, talk, talk." 

Now I realize that we weren't entering fully into communication with him. We weren't giving him the message that sign language was this rich, credible language that was worth using. We kind of expected him to use it as a default, while we never learned more than the basics (which spoke volumes), and kept on chattering.

I'm excited about where things may go from here.

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Let's give kids who don't speak tools to succeed

How many words would the average, middle-class three-year-old child hear spoken to her in the course of a year?

"About 6 million," said Pat Mirenda, an expert on augmentative and alternative communication (AAC) who referenced a related study during a keynote talk at the Bloorview Research Institute's Pursuit Awards yesterday.

Pat said we could expect a deaf child of deaf parents to watch about the same number of signs over a year.

But what about kids who can't speak or sign and use a voice device or pictures to communicate? How often would a young child see these symbols used around them in a year?

"Zero," Pat said. "Zilch. We're not in a symbol-using community and children rarely see others using the same symbols they use, yet we expect them to magically be able to know what to do."

We know that children need to absorb vast amounts of language before being able to express it, Pat said. We know that modelling of AAC is important. But this is an area where we aren't translating research into practice.

"We don't routinely do it," Pat said. "We don't teach teachers they should point to symbols when communicating, we don't teach parents to point to symbols, and we don't teach educational assistants and peers."

Another gap occurs when we assume children who use AAC can't learn to read. "If we can teach a child to manipulate 26 letters, they can say whatever they want," Pat said, noting that expression isn't dependent on the number of symbols programmed into a device.

"But literacy is not a routine practice, still, in Canada, the U.S. and elsewhere in the world." Too often professionals have low expectations for complicated kids and make a decision, at age two to five, that literacy isn't a goal. "We should just teach them to make sandwiches," she said.

In an earlier interview, Pat said this sets children who use AAC up for exclusion. "They're the ones in self-contained classrooms who often don't get literacy and language instruction, and people just say 'that's too bad.' It's kind of stunning in 2013 that people still think they can tell a book by its cover.
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"We know how to teach children to become literate, but we're not doing it," she said at her keynote.

Historically clinicians have decided what type of AAC system a person uses, and the individual had no input, Pat said. 

She talked about the importance of self-determination for people using AAC, which she described as including the following:

Autonomy, which means being able to act according to your own preferences, interests and abilities. For example, if a child wants four-letter curse words programmed into his device, he should get them.

Self-regulation, which involves problem-solving, goal-setting, self-monitoring, decision-making and self-evaluation. Of course clients won't always make good choices, but that is true of all of us, Pat said.

Psychological empowerment, which is about helping children see they can make things happen in their own life. It's about "learned hopefulness," rather than "learned helplessness," she said.

And self-realization happens when you understand your strengths and challenges and can capitalize on what you're good at.

Pat said the focus must be on what a child needs to communicate in settings that are "important and motivating to the child."

She said that too often voice devices are programmed with words for "wants and needs" but not for everyday socializing which is the foundation of friendship. Being able to tell jokes, make comments, and use phrases related to games are important to kids. "Relationships" are the ultimate prize, Pat said, and if an AAC system isn't helping a child maintain and enhance their social network "what are we doing?"

Pat is a professor in the department of Educational and Counselling Psychology and Special Education at the University of British Columbia. She is also a board-certified behaviour analyst.

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One question Friday

In comments related to strategies for encouraging speech in your child, one of our readers posted this question:

Q. "Any tips or hope for those of us who have been doing all of the above for years with little result would be great."

A. As a parent who was unable to accept the fact that years and years of speech therapy were not giving my son a voice (he wasn't making any real progress), I think it's so important to have an open discussion with your speech therapist and developmental pediatrician about what is realistic for your child.

If I could do it again, my goal would be that my child spend the majority of his time in activities that bring him joy and where he can be successful.

My son couldn't be successful in speech.

But he was able to communicate more using sign language, pictures, voice technology and a computer. I think you need to assess, with the help of a professional, which mode of communication is most possible for your child, and make that the focus. As parents, we get too hung up on speech. If your child isn't making meaningful progress in that area, take another route!

Perhaps other readers can offer their suggestions? Thanks, Louise

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A place to call our own

By Stacey Moffat

My son Carter (above) has repetitive behaviours and sensory issues. He’s non-verbal and struggles with social skills. Yet he doesn’t have autism.

Carter’s fine-motor skills are weak. He used to drool (before he had surgery) and has problems with motor planning and coordination. But he doesn't have cerebral palsy.

He’s developmentally delayed and has low muscle tone. But it’s not Down syndrome.

Carter's got a smorgasbord of problems that he shares with peers who have autism, cerebral palsy and Down syndrome. But the smorgasbord doesn’t lend itself to any specific diagnosis, other than the catchall "global developmental delay." So we've missed out on the benefits of being part of a defined community, a support network.

Although speech problems are part of the worlds of autism, cerebral palsy and Down syndrome, parents seem to stay rooted within their child's diagnosistic group. No one branches out to form new groups based on common needs, like communication. Who can blame parents for sticking with their groups? If I was part of an organization that offered resources and support and access to loads of parents who’d blazed a trail before me, I’d immerse myself in that group and stay put too.

I tried to do just that when Carter was born. I joined a support group for parents of children with a cleft lip and/or palate. I wanted to learn from other parents and give back by sharing my own experiences.

But as time went on, Carter seemed to be lagging behind the other children. Other parents talked about their kids speaking and meeting typical milestones. I began to realize that Carter was different. He wasn't a textbook case of a child with Pierre Robin Sequence and a cleft palate. But I didn't understand why.

Although I enjoyed the sense of community, I became anxious with the questions new parents were asking: “How is your child doing now that he’s had the cleft repair surgery? Is he having any issues with specific speech sounds? Do you think he’ll need speech therapy?”

I didn’t know how to answer their questions. "No, Carter isn't having issues with specific speech sounds because he isn't attempting to speak!"  I felt a panicky need to ask my own questions: "Your child is starting to speak? How? Why isn’t my son speaking? Isn’t it normal for there to be a speech delay? Why is my son different? What's wrong with him?"

I didn’t ask my questions. Instead, with great sadness, I concluded that the support group was no longer a good fit for us and stopped going.

I was isolated. We were dealing with something bigger than a birth anomaly and our issues went beyond what this group was designed to support. But where would we find support when we didn’t really know what it was we were dealing with? Our issues didn’t fit neatly into a package like Down syndrome or autism or cerebral palsy.

I felt like a drifter, alone at sea in search of answers. What was going on with my son?

My search led me to a speech therapist from the United States who specialized in oral-motor issues. She diagnosed Carter at age five with childhood apraxia of speech and dysarthria. Armed with this information, I was hopeful. Perhaps there was a new speech community we could call our own.

I went to a conference in Pittsburgh by the Childhood Apraxia of Speech Association of North America. This was it, I told myself. I was going to educate myself and make connections with parents and therapists who understood Carter’s speech problems.

I mingled and chatted. I listened to parents tell stories about their challenges to get their children to pronounce specific consonant sounds and string words together. I even attended a couple of sessions on how to work with children to improve speech clarity. Speech clarity? I didn’t have a clue what these parents and therapists were talking about!

Carter’s speech consisted of monosyllabic vowel sounds. He had no consonant sounds. There had never been any babbling – unintelligible or otherwise. Why was I attending a workshop on speech clarity?

We didn't fit into this new speech community either. We were like square pegs and I was trying to fit us into round holes. The realization was devastating.

Shortly after that conference I sent a video of Carter making his limited sounds to Nancy Kaufman, a speech therapist and renowned expert in the area of apraxia. After viewing the recording, Nancy phoned me and, with great compassion, told me to find Carter the best voice device possible.

That’s what I did. And it opened up a whole new world for Carter. He uses his talker at home and at school and he’s starting to use it more when we’re out and about. He makes comments and requests. He asks questions. And he now has a much easier time interacting with everyone, most importantly, his peers and siblings. A goofball at heart, he loves making people laugh with his jokes. And, like his brother and sister, he’s discovered potty humour (he loves the underwear key on his talker).

Carter has had his talker for just over two years now. But we still feel alone. It’s been hard to make connections with other parents of children who use devices. I don't believe it's because they're not out there. I believe it's because we’re small in numbers and we’re all taking separate routes to a similar destination.

If Carter could get together with other children who use talkers I believe it would motivate him. I also think it would be good for him to be around others who communicate at a slower pace. Too often he gets short changed because people don’t allow him the time he needs to say what he wants to say.

I’ve floundered in search of a supportive community for Carter his whole life. Sometimes I’ve felt bitter that Carter doesn’t have a diagnosis that would allow us to fit into a well-defined group. But I’m trying to look at things differently now. Carter just turned nine. I can relate, somewhat, to many parents of children with special needs, because Carter shares traits with each and every one of their children. And for that I am grateful.

I do still have a dream, however. It's that parents whose children use voice devices (no matter what their diagnosis) come together in a supportive group of their own. If you’d like to be involved in an AAC network, please e-mail me at snmoffat@gmail.com.

Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada and Gail Fisher-Taylor of Kilometres for Communication to create an AAC network. She blogs about raising a child who communicates differently at More than Words.

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More than words, part 2

I said I would write more about our journey to give Ben a conventional voice. This is primarily a recounting of an enormous number of things that we "did" over many years, not really an examination of how it "felt" as a parent to be doing these things, which is probably more  enlightening. That will be for another day! Louise

I was visiting my family doctor. Ben was in his stroller, babbling exuberantly and charming the others in the waiting room.

The doctor came to get me and listened in. "I cannot WAIT to hear what he says when he speaks!" she said.

That was the hope that pushed me for the next eight years.

From the time Ben was two I pursued every known therapy and medical intervention that might bring us one step closer to speech. These are documented in stacks of binders of speech, hearing, swallowing and medical assessments and program plans.

I had big dreams and was capable of mounting large campaigns on my son's behalf.

At two years, two months, I had Ben privately assessed by a PROMPT therapist in Toronto (publicly-covered therapy didn't begin until age three in Ontario way back then). PROMPT was the "big" speech therapy here then, where therapists support a child's oral-motor movements by cuing the mouth and lips with their hands. The therapist said he had mild to moderate low tone of his oral/facial muscles that made it difficult for him to control phonation, jaw, lip and tongue movements. "Ben was observed to use up to three word utterances for a range of communicative functions," she wrote.

Over the next year we had many different therapists work with Ben. One PROMPT therapist saw him weekly. "I really like the new therapist," I wrote to a friend at the time. "I love the way she interacts with Ben. She always has some specific activity ready to work with him. They generally sit at a little table together. Ben usually loves whatever she has him doing, and really listens to her and does most of what she asks. He said two things at the last session -- 'oben' for open and 'go away.' He still has just about five to 10 words that we hear often. There are many sounds he is physically unable to make. The therapist says the problem is oral-motor low tone. She said everything is in place to help Ben now, and to give it a year and hopefully we will see some real progress." This therapist also suggested he had auditory processing problems, because he didn't respond to sound the way he should.

In fact, Ben had a permanent, moderate hearing loss in both ears -- which was magnified by constant middle-ear fluid due to structural problems with his eustachian tubes. But that hadn't been identified yet.

At 18 months Ben had his first set of ear drainage tubes put in to combat severe chronic ear infections and middle-ear fluid. While still under anesthetic he had an evoked potential hearing test and we were told he had moderate loss in both ears and needed hearing aids. I just looked up the hospital note (which I only purchased years later) and it says results showed a bilateral, moderately severe sensory neural hearing loss. However, the surgeon said he'd never drained such copious amounts of black fluid from a child's ears before and there was a question as to whether the hearing test was a true reading.

I thought about leaving that part that way.

But to be honest, the question about the accuracy of the test was raised by me. I called the audiologist and asked whether the reading could be affected by the huge amounts of liquid that had just been removed from his ears. Part of me couldn't believe that Ben's hearing was that bad because we had taken him religiously for hearing tests since he was a newborn. And part of me didn't want to put hearing aids -- and their associated stigma -- on my 18-month old. The audiologist said it was possible that the middle-ear problem had compromised the results. She suggested we hold off to see if we might get a closer to normal hearing test in the studio.

On sound-field tests -- where they pipe sounds into different sides of a room and if the child turns to the sound a box with animals dancing in it lights up -- he was testing in the borderline normal range. And following the evoked potential test, he continued to test in that range on what I think is a highly subjective measure. We now know those tests were wrong. Ben was visual. I believe his eyes were peeled for those dancing bears and his visual perception was mistaken for hearing. Despite frequent trips to audiologists, Ben wouldn't wear hearing aids regularly until age five. In an audiology report from our local audiologist at age five it says: "Ben has persistently demonstrated borderline [normal] hearing levels.”

It wouldn't be till he was nine that he had a videoscope (on a private consult we had in the U.S.) which showed he had abnormally small, compressed eustachian tubes which caused the fluid build up and malfunctioning of eight sets of drainage tubes. They blocked almost as soon as they were put in. We were forever squeezing ear drops (that never dislodged anything) in Ben's ears. But the drops caused him great pain. In anticipation of the dreaded drops, he quickly learned to cover his ears when I put him down at night.

For all those years I'd been convinced that Ben's ear infections were caused or exacerbated by my bottle-feeding him. I'd failed the cultural edict of "Breast is best." When I raised this question at the appointment at age nine, still consumed with guilt, the specialist laughed (but in a good way!). "His ears are structurally abnormal," he said, pointing to the image on the screen. "This has nothing to do with breastfeeding."

Sometimes I wonder what might have happened if I hadn't questioned the veracity of the evoked potential hearing test and been so persistent about it. And we had simply proceeded with hearing aids. That said, it was impossible to keep aids in his ears when they were infected.

I think we got his first pair at age four. The audiologist still wasn't convinced that he needed them. It was quickly apparent that the behind the ear aid wouldn't work because Ben's ears were so outstanding that the aids flopped forward and waved about. We got in-the-ear-aids, but because of his painful ear infections, he would not keep them in his ears. At one hearing test, when D'Arcy tried to put them in, Ben fought and cried until D'Arcy ended up in tears. The audiologist said she thought he was getting good sound input without them and we didn't need to persist. At the time Ben was in a junior kindergarten program for kids with physical disabilities but he didn't wear them there either: we were told that a staff person couldn't follow him around constantly to make sure he didn't pull them out and lose them. And at the back of my mind there was always the fear that if in fact his loss wasn't significant, the aids could cause damage.

In addition to speech therapy, we decorated the house with picture symbols and had a picture communication book. Ben was good at getting the book to show us what he wanted. When a therapist wasn't willing to prescribe a sophisticated voice device for Ben (because she wanted us to start with one with only four messages on it) I got a distributor to loan us one for free. I then videotaped Ben using it and went back and complained. We got the Dynamite funded under the assistive devices program. But though Ben became quite good at using it, it wasn't functional for two reasons: It was heavy and he couldn't carry it by himself and it wasn't organized in an intuitive, user-friendly way. It was based on pages and pages of embedded vocabulary, much like a dictionary. Can you imagine having to locate a word in a dictionary in order to use it? And then look up the next word? It took so long he lost incentive.

Because I was on American parent e-mail lists for kids with disabilities I began to hear about types of speech therapy we couldn't access in Toronto.

In addition to his low tone, Ben had picked up the diagnosis of apraxia -- a disorder where the child knows what to say but can't sequence the motor plans necessary to produce words.

And before he turned two he was diagnosed with an uncoordinated swallow, which had been the cause of many choking episodes when he started to eat real food. When Ben swallowed, not all the food went down. Some pooled at the back of his throat. So he needed to do extra swallows or he would choke.

"I thought I had accepted that he had a swallowing problem and that it was related to his low tone," I wrote at the time. "Yet when the OT came out after the feeding study and told me he did in fact have a problem, but that it was an uncoordinated swallow -- probably to do with his genetic condition rather than low muscle tone -- I was shocked and full of grief. My husband couldn't understand why I was so upset. It was then that I realized that somewhere in my heart that little flame of hope had been burning, the one that can lead me to believe things may be all right, even in the face of insurmountable evidence."

When Ben was 4 1/2, we took him to see Nancy Kaufman in Michigan. Nancy was the North American guru for treating apraxia by getting kids to do word approximations: boo boo (hurt finger); neigh neigh (horse); wuh wuh (dog); wa wa (water).

A few weeks before we left, I went back to church. I didn't know how to help Ben speak and my best rational attempts weren't working. I was desperate. During a snowstorm one Sunday only a handful of people turned up. Instead of a regular church service, the minister had us sit on the stage together for an informal gathering. We had an opportunity to ask for prayer and I asked that they pray for our visit to Michigan, and that it would help my son Ben, who was unable to speak. An older man turned to me and said: "Maybe God doesn't want your son to speak. Have you ever considered that?"

"No" I railed. "I don't believe in a god who won't allow my son to speak."

Nancy felt Ben’s speech problems were largely physical -- due to low tone, oral-structural deviations (small lower jaw and mouth; tight, then lips; receeding chin; velopharyngeal incompetence) and apraxia. She was thrilled when he scored well on the Peabody Picture Vocabulary, which tests single-word comprehension. She said he wasn't ready to begin her apraxia program because he first needed to improve his oral muscle strength and coordination. She also felt we needed a second opinion about whether surgery could fix some of his structural problems.

I was ecstatic that Nancy seemed to be drawing a more precise path to the treatment of Ben’s speech problems.

I was the one driving all of our therapy efforts and I had to convince D’Arcy of the merits of these expensive consults. I can see now that I had blinkers on. In order to research, arrange and afford these trips, persuade D’Arcy and make the long drives manageable for our two little kids, I had to be single-minded.

Five months later we drove to Westchester, New York to see Sara Johnson, the renowned expert in oral-motor therapy. Ben was four years and nine months. Sara diagnosed him with a severe oral-motor/feeding/speech disorder secondary to weak muscle strength in the muscles of the abdomen, velum, jaw, lips and tongue; motor planning deficits -- dyspraxia; hearing loss; and structural deficits.

We had to focus on strengthening his muscles through oral and feeding exercises to give him a base from which he could speak she said. Her recommendations were oral-motor/feeding/speech therapy two to three times a week. And 15-20 minutes of oral exercises daily.

We couldn't find a therapist locally who followed this program, so Ben's worker and I did our best with the daily exercises.

They included pre-feeding massage of his face; rubbing swatches of fuzzy, soft, smooth and rough fabrics on Ben's cheeks; rolling a vibrating toothette in Ben's lips in a variety of ways; and having him kiss a small ice cube.

Feeding exercises included using a particular curly straw and getting Ben to chew cubes of food at the side of his mouth.

Oral-motor exercises included blowing exercises with candles, bubbles and whistles. It was suggested I "construct a birthday cake out of styrofoam, tin foil and other decorations, place a candle in the cake, and provide jaw/lip support while Ben blows out the candle five times."

I'm not a crafty person, and I often felt defeated before I had even begun the set up for these activities.

Other oral-motor exercises included making ice straws and having Ben bite in a certain pattern on each side (this could also be done with veggie stix, which weren't yet available in Canada, so I purchased them in bulk in the US). Finally, we had a number of exercises related to Ben chewing gum on both sides of his mouth.

For the next year or so we would travel to Albany, New York (half the distance to New York City) to see one of Sara's associates every couple of months.

When Ben was five we got a second opinion on surgery to correct his oral differences at the New York University School of Medicine. Again, because I was on parent e-mail lists, I heard about monthly team meetings that were held at NYU bringing together multiple specialists to assess children with complex cases.

One mother wrote about a plastic surgeon there who had the highest rate of success in performing velopharyngeal flap surgery, which is used in kids whose palate doesn’t close properly during speech, causing air to escape through the nose and making consonants impossible.

It was thought that Ben had this problem, particularly since as a young child when he drank, liquids came out his nose.

This mom had contacted all of the surgeons across the U.S. to determine their surgical effectiveness – because a rare but scary complication of the procedure is that it can cause sleep apnea.

We drove the 10 hours to Manhattan and stayed for a nominal amount in a medical resident building right across from the hospital.

Ben was ‘presented’ in a large meeting room to a bunch of doctors and therapists and promptly crawled under a table.

He was seen by a plastic surgeon who said he definitely needed the pharyngeal flap surgery. But the catch-22 was that he couldn’t do the surgery until Ben had more speech (which would determine the type of closure needed).

We also saw an audiologist who insisted that Ben must wear hearing aids. He told us that even a mild hearing loss can turn into a major disability in a child with complex problems. Armed with this knowledge we returned home and succeeded in getting Ben to wear the aids (I don't remember what bribes and enticements were used).

We continued on with PROMPT therapy at home – at one point having four 30 minute sessions a week that cost about $700 a month. In addition, we were also able to get some blocks of publicly covered therapy.

Ben’s PROMPT therapist wrote: “Ben is a boy who demonstrates significant delays in body awareness, oral motor execution and sequencing skills, language skills and possibly auditory processing...Ben’s ability to plan some oral motor sequences independently is increasing, such as “no,” “yeah” “me” “on” “one, do/two, dee/three.”

When Ben was six we took him to see a developmental pediatrician at Holland Bloorview. I was frantic about his lack of progress over time. He always had a handful of word approximations but they never blossomed into anything more and sometimes he lost words. I'd never worked so hard at something in my life and had so little success.

"Things would have been different if Ben hadn't had severe constant ear infections for so long during such a critical period," the developmental pediatrician said. But he did, and the doctor felt his problems with speech were related to a central language output problem.

"It is my firm conviction that he has much more 'language' in his head than he is able to express with oral language," he wrote in his note. "I strongly encouraged Benjamin's parents to consider reinstitution of sign language."

We had introduced Ben and Lucy to sign earlier on, but Ben had only picked up a few signs and he couldn't manipulate his fingers into some signs. The doctor felt Ben would never make progress with spoken language but that sign held much greater promise.

He wrote to our schools for the deaf to ask about Ben receiving services or attending their school, but was told that his moderate hearing loss didn't meet the threshold for service. I feel that was a critical juncture where the system let us down.

A few weeks later we registered for a sign-language immersion camp for adults run at the Bob Rumball Centre for the Deaf. We rented a nearby cottage where a worker stayed with Ben and Lucy during the day, while D'Arcy and I and a SECOND worker went to sign-language immersion for adults. This was a costly endeavour but we felt it was valuable.

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More than words, part 1

I love to talk.

It began with my family and childhood friends and blossomed at school and in my initial work as a journalist.

Talking was central to what I judged to be most meaningful in life.

I had the gift of the gab and found silence awkward and uncomfortable – a void I needed to fill. If I was nervous, I could talk your ear off. As a child, I grilled my babysitters on endless subjects when they turned off the light and tried to extract themselves from my bedroom:

"What is your favourite colour?"

"Who is your religious leader?"

"What if it was the third period of the 1972 Canada-Russia hockey game and Paul Henderson had to go to the bathroom?"

Once a psychologist told me that I used conversation to control situations and glide above my own insecurities, dictating the topics and drawing out more from a person than they probably wanted to tell.

But I was raised in a home where talking to people and showing an interest in their ideas and lives was highly valued.

Before Ben, I always thought of speech as being automatic and related only to thought: you think something and then it comes out in words.

I didn't realize that, in fact, talking is like walking – a motor activity involving a complex interplay of breathing skills and lip, jaw and tongue movements.

It was incomprehensible to me that someone couldn’t speak. I guess I had read about children who were non-verbal, but it was something completely outside my experience.

Ben babbled exuberantly at 3 weeks. I still have the photo D'Arcy took of him propped up on my knees facing me, interacting. At seven months, other mothers in a play group marvelled when I passed him to someone to hold and he cried clearly: "Mama, Mama!"

At 1 he referred to his favourite Sesame St. character – Elmo – as Elma. Bottle was "bo" and "Be go bo" meant Ben go bottle. Apple was "apu" and Daddy was "Uma." His pediatrician noted that he was talkative and sociable for his age.

Severe recurrent ear infections kicked in then and we didn't know Ben also had a permanent moderate hearing loss in both ears – made worse by constant fluid in his ears. We later learned he had a submucous cleft palate and related abnormality of his ear canals. This explained his constant ear infections that didn't respond to prophylactic antibiotics or eight sets of surgically-placed tubes to drain what one ENT described as "copious thick black fluid.”

It was at about this time that I learned that severe speech delay or absence of speech was a symptom in some descriptions of Ben’s syndrome, called Langer Giedion.

Given my love of talking, and the general value our culture places on speech and people who speak well, this frightened me.

The anxiety that had attended waiting for Ben to sit, stand up and do other typical motor activities – while taking him to therapy and carrying out a million exercises at home – was now overshadowed by the weight of: "How am I going to get Ben to talk?"

I asked about speech therapy, but learned that in Ontario it didn't traditionally start until age three.

At about age two, I managed to get a speech therapist through our home-care service to visit, and she assessed him as being at an 18-month level for speech (I often go back to her document, just to prove to myself that he really did have some speech early on).

She came for two sessions and was fabulous -- but she was retiring. The person who replaced her was a new speech pathology grad who specialized in working with seniors with swallowing disorders. She spent her visits chatting with me and didn’t come for long.

We began private sessions with a program called KidSpeech. “Ben says ‘owl’ very clearly,” wrote the therapist in April 1996.

One night as I went into his room for a second time to tuck him in his crib, he said, as clear as day: "Hi Mom."

Another time, he was pulling vegetables out of the crisper and said: "gwee peppa" for green pepper.

He said up and “oben” for open and “bubbu” for bubbles and “weh” for web (as in the spider's web in his Eric Carle book). He said "Gobuh" for "Goldbug" – a favourite character in his Richard Scarry series. “I wa” was I want.

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Goodbye (unrealistic) dream

Today I'm getting rid of these how-to books and kits for kids with speech problems. They date back to when Ben was a preschooler and I was heavily invested in trying to get him to talk. I brought them in to work years ago to pass along to a speech therapist, but somehow they stuck with me, like the lists of words that Ben spoke as a toddler but hasn't uttered in 15 years.

These books once had a place at home in a cupboard along with bulk quantities of coloured horns of all shapes and sizes, straws, tongue depressors, teddy bear bubble blowers, pink sponges on sticks to stimulate the gums, plastic tubing to chew on and a deck of recipe cards with typed instructions on how to perform a gazillion mouth, tongue and cheek exercises.

If I could only buy enough supplies, perform enough oral-motor exercises, squeeze out enough word attempts.

More to come on why it was particularly hard for me to accept that my child would never speak.

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Is the universe trying to tell me something?

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.

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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?

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.

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