A sister's story fuels this scientist

By Louise Kinross

Krissy Doyle-Thomas is a neuroscientist at Holland Bloorview. She's studying whether a brain-imaging tool that detects blood oxygen levels can identify pain in children with autism who use little or no speech. CBC profiled Krissy during Black History Month as one of 150 black women who have made a place in Canadian history for excellence in their field.

BLOOM: What led you into children’s rehab?

Krissy Doyle-Thomas: For me it was out of a need. My younger sister Eddie-Marie was born at seven months and there were some complications: she wasn't getting all of the oxygen she needed. She was diagnosed with global developmental delay when she was very young.

We were a young immigrant family trying to navigate how to get help for her. We were in and out of SickKids for a very long time, meeting with specialists to address her medical needs in addition to trying to understand her global delay. The lack of answers my parents had about how to best support her really impacted our family. 

I was connected to the frustrations and stresses my parents were feeling and that started my desire to learn more, and to be someone who has that kind of information to share. I initially wanted to become a medical doctor. But then I went to school for psychology and I discovered the brain during one of my courses and I said 'This is what I want to do.'

BLOOM: Some people look at the brain and don't want anything to do with it!

Krissy Doyle-Thomas: I'm intrigued by the mystery of it. The fact that one organ controls everything we do. Of course we have other vital organs, like the heart. But the way our understanding of self and the way in which we operate sits in that one place, for me that is intriguing. I wanted to learn about the thing that makes me most like myself. And then when things go wrong, how can we address that? My passion is on the research side. I'm passionate about using the information I have to help find solutions for treatment, and also to educate people about the brain and the disorders I study.

BLOOM: How is your sister doing now?

Krissy Doyle-Thomas: She's fantastic. She's grown into a very independent, mature woman. She's married and has a little girl. She's got a knack for computers. My dad is an accountant and she supports his business. She knows how to handle data. She's developed a life that is who she wants to be. But growing up she had a hard time comparing herself to her sisters, who are all now senior executives in the business world, or me, with my PhD. When she let go of that, she really blossomed in her own way.

What I learned was how we view success is a personal thing, it's individualized. When my parents finally came to terms with the fact that Eddie doesn't need to fit into the same mould that their other daughters do, that allowed Eddie to be who she really is. To accept herself and the 'wonderfulness' that she is.

BLOOM: Can you describe your research?

Krissy Doyle-Thomas: We're using a new brain imaging tool that is portable and inexpensive and allows us to image the brain and see changes in blood flow in response to a task or state. When neurons are active they require oxygen and blood flow goes quickly to the active areas. As oxygen is released the signal changes and we can see where in the brain is active. 

We want to see if this can pick up the pain response in kids who have autism and are non-verbal. Our clinical partners see these kids in our psychopharmacology clinic. They're referred for aggression and irritability, but we don't really know what might be driving this behavioural response. Often times later on the clinicians discover medical conditions that are very painful. We're trying to create a tool that could be used in the clinic to help identify kids who may be experiencing pain and can't tell us.

BLOOM: What's challenging about the work?

Krissy Doyle-Thomas: Understanding the cortical pain response in itself is a challenge, in the absence of emotion. How are we going to think about pain when physical and emotional pain may happen in tandem? A lot of times both need to be treated. We want to know if we can get a reliable signal that will warrant medical intervention.

BLOOM: Why did you choose to study autism?

Krissy Doyle-Thomas: I really wanted to study global developmental delay, but when I was in school there weren't many researchers looking at that. I thought autism is another developmental disorder, if I start there, perhaps I can learn generalizable skills. Then when I'm an independent researcher, I can branch out. My end goal is to make my way back to studying global developmental delay.

BLOOM: What do you love about your research?

Krissy Doyle-Thomas: I love that it provides answers to families, not definitive answers, but more information that helps families understand the brain and autism and will eventually be translated into care and treatment.

BLOOM: Autism is a controversial area because many autistic adults are opposed to the idea of cure and want others to value their way of thinking.

Krissy Doyle-Thomas: I agree with them. It goes back to how I feel about my sister. When a person figures out their identity, we embrace that. If someone wants to embrace their autism as who they are, we need to be respectful of that. And if someone wants to treat their autism, we have to respect that. It needs to be individualized.

BLOOM: You were talking about what you love about your job.

Krissy Doyle-Thomas: I meet really cool kids and they're all so different and I appreciate that. I think diversity is very important. You meet all kinds of people with different abilities, ethnic backgrounds, genders. Everyone brings something to the table. You learn so much about being a human being by walking in the halls here. That's what I love about being in an academic health centre. It helps me to have a new outlook on life—be who you are, and let others embrace that. 

BLOOM: There's a lot of literature on how having a sibling with a disability affects kids. While some is very positive, other research shows brothers and sisters can find the complexities that disability adds to a family to be challenging.

Krissy Doyle-Thomas: I did find it challenging, yes. I always wanted to help, and when we couldn't find answers for my sister, I felt frustrated. She didn't always have the insight to know she was different, she just knew she was being bullied. My parents tried to put these protective parameters around her and she pushed against that. We didn't understand global developmental delay and what she could or couldn't do, and she wanted that independence. It was hard for her to understand why she couldn't do the things we were doing.

BLOOM: There's a group at York University doing research on the barriers facing immigrant moms of children with developmental disabilities. You mentioned you were an immigrant family. 

Krissy Doyle-Thomas: We moved from Trinidad to Toronto when I was nine and my sister was two.

BLOOM: This York group held a workshop here and the diversity in the room was unbelievable. There were a number of support groups that I had never heard of: a group for Muslim moms raising children with disabilities and another for Chinese moms and another for Somali moms. There were also lots of service providers from outside Holland Bloorview. But there were only a handful of our staff there. They were talking about how challenging it is to get the services your child needs when you don't speak the language or don't understand how to advocate in this culture.

Krissy Doyle-Thomas: We spoke English, so that wasn't an issue for our family, it was more not knowing what the best treatment was and how to get it.

But there was a situation recently that opened my eyes in this area. When the CBC story on black women came out, we did a series of photoshoots in groups of about 30 to 50 women. We all shared about what we did, and when the others found out I was a neuroscientist, they had so many questions about their own kids and other family members. Some had been diagnosed with autism or had a concussion or something else. They kept saying 'You have the answers our community needs to hear.'

It made me realize we have to go out into the community, instead of saying 'come to us.' Keeping information within the four walls of my workplace is not what my community needs. Information can be received in a different way if the person giving it understands where you're coming from culturally. So the families say 'Okay, I get this, they're speaking my language, in more ways than one.'

BLOOM: Have your thoughts on disability changed since you came here?

Krissy Doyle-Thomas: Definitely. It's about appreciating people for who they are and not holding anyone up against any one measuring stick. It's about embracing the person and allowing that person to shine for who they are, without biases, or without them having to fit into a mould. This organization opened my eyes to that. It wasn't an aha moment. But the culture here has become my culture, and changed my outlook.

Krissy Doyle-Thomas's research is funded by Holland Bloorview's Centre for Innovation.

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A play, an alphabet board, a new voice

This Is The Point is a play about two couples: a man and woman who have cerebral palsy, and a man and woman who have a child with cerebral palsy. One of the actors uses a head pointer to communicate with an alphabet board. “The play is about love, sex and disability,” says Dan Watson, a co-writer and actor whose son Bruno, 7, has cerebral palsy. He co-leads Ahuri Theatre, which is producing the play with The Theatre Centre. “The themes we circle around are love, parenthood, communication and acceptance.” BLOOM interviewed Dan to learn more.

BLOOM: Tell us about Ahuri Theatre.

Dan Watson: It was formed by me and a few other people who went to school together in France. We did a lot of physical theatre there. We worked with mask and clown and mime and tragedy. Ahuri works in Japan and Canada. We’ve done a lot of shows that incorporate different languages. When we write, we write on our feet, not sitting at a computer. We get in a space and we do improvisation and the script comes at the end. This Is The Point evolved more out of my personal life. Our older son Bruno is non-verbal and I wanted to do something that looked at language that went beyond words.

BLOOM: I'd love to hear more about Bruno.

Dan Watson: Bruno really likes rough-housing, loud music, wrestling, and going fast. His brother Ralph is four, and the two of them have fun running around with Bruno in his walker and Ralph on his bike. To communicate, he may look at things he wants, or vocalize or gesture with his arms. He uses an eye-gaze system and some low-tech tools like a communication book. We want to find a way for him to consistently advocate for himself—not just by saying ‘no,’ but by actively saying ‘I want to do this.’

BLOOM: In This Is The Point, one of the characters has cerebral palsy and uses a head pointer and alphabet board to communicate. Why did you want to do this play?

Dan Watson: Tony Diamanti is the actor who is non-verbal and uses a chair. We met Tony through another project called What Dream It Was. We invited him to work on that, but he said he wanted to do his own play and he sent us a play. I was struck by his voice, his sense of humour, his passion and his wanting to share his sexual experiences and to make sure that people know that people with disabilities are sexual human beings that live very full lives. I think a lot of people in the general public don’t see someone who looks like Tony that way. I thought this is exactly the kind of opportunity that I want to make happen. If Bruno was older and wanted to do this, this is something I’d hope someone would take on and work with him on.

I didn’t know where it would go, but we started to work on this play. We wanted all four of us to be on stage.

BLOOM: So in addition to you and Tony, there is Liz MacDougall, who is Tony’s partner in real life, and Christina Serra, who is your partner? 

Dan Watson: Yes. At first we tried to make the play the way you usually do. It was very physical, with scenes and blackouts. But it wasn’t working for Tony. We were trying to fit him in to something that wasn’t going along with the way he communicates and lives. So we started to have Tony communicate the stories himself, but then we didn’t fit in. We’ve come to something where we talk in the show and we talk with the audience and we also jump into scenes that are re-enactment scenes. By the nature of who we are, these scenes all have connection to disability.

A lot of the stories we share are, for lack of a better term, trying to normalize in a certain way disability—and sharing our lives, rather than lecturing or trying to teach people. We model the way we work together so we don’t hide the transitions that take a long time. It takes a long time to get set up and there’s nothing wrong with that, whereas we live in a society that is obsessed with speed. We’re asking people to stop and slow down and be with us and to feel that that’s okay. It takes Tony a long time to communicate because we have him talking directly to the audience and the audience has to read along with him.

BLOOM: In a trailer for the play, Christina makes a comment about how we’re not as inclusive as we think we are. Then she says: ‘You don’t know about disability until you’re opened up into that world.’ It seems like your play might be giving people an immersive experience into that world.

Dan Watson: That might just be the thing we want to have happen to an audience. When people encounter disability, it can bring up a lot of different feelings, and some uncomfortable ones. What we want to do is share and open them up to that world and show them that it’s okay that people with disabilities live all different kinds of ways. Just like anyone, they have struggles and happy moments.

BLOOM: I found it very interesting what you said about speed. Our culture glorifies speed. This is something I’ve been aware of because my son has a number of physical disabilities and he can’t move quickly.

Dan Watson: We were initially trying to fit the play into a form that was about speed. We need to move onto the next scene, keep it going, keep the energy up. Then we realized that’s not what this group is bringing, and slowing down is not a bad thing. That’s when things opened up for us. We presented it a couple of times and audience members say they feel at ease and there’s a real casualness to the show. We’re welcoming them and opening them up into our world for a moment.

Of course this is part of a bigger conversation. I don’t have any visions of everyone coming away from the show knowing everything about disability, nor do I want that. We’re just sharing our lives and our perspectives. I do hope they go away and take us with them, and that maybe we pop up into their heads in their daily lives when they need us—perhaps even when they’re encountering people who don’t have disabilities but who are different.

BLOOM: Did you have experience with disability before Bruno was born?

Dan Watson: No. I don’t think I even knew what cerebral palsy was before Bruno was born. His life has opened me up into a whole different community. I have these memories of being in school and kids with disabilities were in chairs on one side of the playground watching us. And I look back and think ‘Oh my god,’ I didn’t even think about them.

BLOOM: Have your thoughts about disability evolved?

Dan Watson: Yes, and with this show too. At first we were focused on the way Tony communicates. When I see people encounter him it’s a bit of a novelty—they’ve never seen something like that before. Then Tony says: ‘Pay attention to what I’m saying, not how I’m saying it.’ Over the course of working on this show in a funny way disability is less of an issue. The differences aren’t so apparent to me anymore. Tony is who he is and it’s only when I see other people encounter him that I go ‘Oh yea, Tony is non-verbal, yet I forgot in a funny way.’

BLOOM: I think having a child who doesn’t speak conventionally is challenging because verbal speech is so prized in our culture.

Dan Watson: It is really hard. There’s constant pressure from outside in terms of how Bruno interacts with people. There’s a scene in the show where I’m on the playground and that’s always a big challenge because Bruno and I go to the park all the time. We go on the accessible swing and I’m always having to negotiate with kids who want to be on the swing. And explain to them who Bruno is and why he can’t go on the other swings. You have to be this advocate and do all this explaining when you just want to hang out on the swing. Then you also wonder—what does Bruno think? I’m sure he knows this is going on.

We were just talking this morning about subtle communication things that you know with your child that other people don’t know. You probably see this with Ben. It’s hard when you can see what’s going on but others can’t seem to see it.

BLOOM: What’s been the greatest challenge of producing this show? Was it altering it from a traditional format?

Dan Watson: Yes. But that’s also the artistic—that’s what artists need to do is push beyond what they know, and that includes disability but also how you make things work. Usually people who don’t have disabilities are cast as characters with disabilities. That’s because it’s easier for the show—and the way the show is done.

But if you take a step back and say no, we’re working with people who are differently abled on stage, there are a lot of opportunities that present themselves. That’s really exciting as an artist. Instead of doing it the same old way you’ve always done it, it can generate amazing, different work that you’ve never seen anywhere else. It’s all about who’s in the room. Sometimes that’s a challenge—it’s taken a long time for us and trying different things. But the challenge is actually part of the reward, as well as what’s really engaging.

This Is The Point runs from Nov. 4 to 20. Book your tickets here. Photo below of Dan Watson, Christina Serra with their children Ralph and Bruno. 

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Disabled teen plays lead role without speaking? Hello 'Speechless'

By Louise Kinross

On Sunday, New York Times TV critic Neil Genzlinger wrote about "Speechless," a new ABC family comedy set to air tomorrow.

The series created a buzz in the disability community because 16-year-old JJ DiMeo, one of the main characters, has cerebral palsy and doesn't speak. 

Genzlinger tells us that he understands this world personally because his daughter, who has Rett syndrome, is non-verbal. 

In fact, Genzlinger says he watched the pilot episode while at Camp Communicate in Maine, which is for kids who use voice devices to communicate.

Not only is the show unique in casting a non-speaking person as a central character, but Micah Fowler, the actor playing JJ, has cerebral palsy himself.

Fowler is able to speak, but in the show he communicates by selecting letters to form words with a laser pointer attached to his glasses. A partner then reads them. 

Whoa! A disabled person playing a lead role and communicating with technology that's stigmatized in the wider world? This is earth shattering.

Scientist Gail Teachman, who worked as an occupational therapist for 20 years at Holland Bloorview, has researched how people tend to exclude high school students who use voice devices. In a BLOOM article, she notes that even when a teen gets good at using a device, out in the world "People don't stop, they don't wait, and they don't value what [the person has] to say."

To cast JJ, who labours to communicate, is as bold as "television's first single mother or black lead or transgender storyline was," Genzlinger says.

Watching the pilot at his daughter's camp, Genzlinger says the consensus among staff and campers was that whoever wrote the sitcom "gets it." And apparently he does. 

Creator Scott Silveri grew up with a brother who was non-verbal, Genzlinger says. He told Genzlinger he wasn't interested in a story "about" disability, but rather, about a family and the interplay among its members when one has a disability. 

Authentic representation of disability on TV, the stage and in film is a hot topic. 

In Los Angeles, the musical The Hunchback of Notre Dame is playing with John McGinty as the first deaf actor to portray Quasimodo, more closely resembling the deaf character in Victor Hugo's novel. For each of Quasimodo's songs, a singer joins McGinty on stage, while McGinty signs the song in American Sign Language. 

"One of the things I feel very connected with is sometimes I do feel excluded, and I do feel like an outcast," McGinty says in this piece in LA Weekly. "It's one of those things of being a deaf individual in a hearing world."

McGinty says he relates to the inner world of Quasimodo, even if he doesn't have similar physical traits, such as a crooked spine.

Earlier this year, I read this fascinating piece about the movie adaptation of R. J. Palacio's bestselling book Wonder, about a 10-year-old boy born with unusual facial features. "I won't describe what I look like," he says on the first page of the book. "Whatever you're thinking, it's probably worse."

The book is a fabulous account of what it means to look different in our society, and how others come to see him.

But instead of casting a boy with a craniofacial disorder, an actor will spend hours having his face altered with makeup and prostheses, then "fake" a speech impediment.

"We are inspired by seeing real minorities on the screen, not Caucasian actors cast as ethnic characters, and not actors pretending to have a disability or physical difference," writes Cynthia Murphy, who has Treacher Collins syndrome. "We are just asking for an accurate picture of how we live on a daily basis, and to see and feel the real deal."

I couldn't have said it better. 

Genzlinger in The New York Times says he hopes Speechless "breaks down the sense of isolation that envelops families like the DiMeos."

Making those families visible in an authentic way is a first, long-overdue step. We all long to see ourselves in mainstream storylines.

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A voice for Andrew

Holly Zhuang's brother Andrew (above left) died in September. Holly spoke for him and 300,000 Ontario children with special needs at a meeting held Tuesday by the Provincial Advocate for Children and Youth to explore ways to make youth with disabilities better seen and heard.

Holly described how Andrew's severe cerebral palsy gave him "little to no control" over his body, yet he developed a unique method of moving his tongue to communicate yes or no. "It was his outlet, his voice," she told a room of professionals who were gathered to brainstorm ways to raise the visibility of  youth living with disability in Ontario.

Yet while Andrew's family understood his language, Holly told the story of one doctor who didn't take the time to decipher it.

Andrew "battled many illnesses," she said. In November, 2012, he had surgery to reduce his tight muscles.

Because of his spasticity, the stitches ruptured post-surgery. A medical resident "decided independently to stitch up his wound without anesthetic," Holly said, a total of seven stitches.

Andrew couldn't verbally protest this barbaric treatment the way other youth could.

"...I realized this nightmare occurred not because the intern didn't have enough time or didn't have a choice, but because my brother didn't have a voice."

Holly said she was excited to be part of the Provincial Advocate's efforts "to elevate the voices of non-verbal children."

She sang a song she wrote called Angel Breathe to describe her emotions when her brother suffered.

"I'm howling at the moon
Pouring my sorrow all to you
That's the only way I know how to numb myself."

Holly spoke of Andrew's "strength and courage and unbreakable will to live... To me he is my brother and our life was normal."

Now a music therapy student at Wilfred Laurier University, Holly said: "Andrew helped me become who I am."

BLOOM will report on the recommendations that come out of the Provincial Advocate's work.

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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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What you said about Certain Proof

Listen to a discussion among parents, therapists and teachers following the screening of Certain Proof, a documentary about students with communication problems struggling to be heard in the school system. Jump to our Family Resource Centre and click on the second item: Audio: What you said about the film Certain Proof.

Then come back here if you have comments. Thanks!

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If you don't speak, you don't count, families find

The film Certain Proof is a jarring reminder of how children who can’t speak aren’t “seen” in our culture – are made invisible by people who assume they have nothing to say and a system that doesn’t give them the tools and time to develop a voice.

At the beginning of the American movie – shown at our BLOOM speaker night Tuesday – a doctor says that we have the medical care to save the lives of children with disabilities, but questions: “Do we have the humanity to make those lives meaningful?”

The film follows three students – Colin (above), Josh and Kay – as they struggle to be accepted in public schools. All three have cerebral palsy and significant physical disabilities, but Kay can speak slowly, though not clearly.

Two-and-a-half years after the filmmakers began the documentary, Kay seems to be the only one making progress.

Colin – who painstakingly taps on a voice device with a head pointer – learns that he won’t be getting a high school diploma because he can’t demonstrate what he knows fast enough to keep up with peers.

Josh – who is assessed by a team of literacy specialists who conclude that he can learn – returns to a school where staff misinterpret his signals and exhaust him with repeated requests at rote identification of colours and the alphabet. When he gestures toward a picture to say he’s mad, his assistant redirects his hand to the happy face.

School staff, while well-meaning, underestimate the students, focus on what they can’t do, and don’t appear to have the training to help them develop a solid form of communication or a way of participating in class.

Even though Kay is an A student, her peers admit assuming she was "dumb" because she couldn’t speak. They also laughed at some of her movements.

The hectic pace of a regular classroom doesn’t allow these students the extra time they need to express what they know. One literacy expert notes that because communication is so laborious for these kids, they can’t show their intelligence on standard tests.

Two of the parents in the film express their despair and feelings that they’ve failed – despite going to extraordinary lengths to support their children.

What struck me was the spark of personality in each child – and how over time it was snuffed out because they weren’t understood or heard. Over time these children got frustrated and sad and gave up.

Will Colin, who’s bright and engaging, end up by himself in a nursing home in a corner, as his mother fears?

In the discussion following the Holland Bloorview screening, parents, therapists and teachers called on us to be a louder and coordinated voice for our children – publicly telling our children’s stories. One of the reasons our children are marginalized is that the average person is unaware they exist. Most people don’t know children who don’t speak and have no sense of the challenges facing them in a society and school system that values verbal communication.

There was a call to parents to better tell the story of their child’s life – including their gifts and what we’ve learned as parents about what’s important.

I think we’re often silenced in this way because it’s hard to find the words to convey who our children are without speech. We see clearly our kids’ personalities and interests and strengths. But when the average teacher or student looks at our children, they only see what is different.

It does make me want to write more publicly about our life with Ben.

What about you?

Parents of children who use augmentative communication may be interested in monthly AAC clubs for kids and teens at Holland Bloorview. Call 416 425 6220, ext. 3686. Toronto parents may be interested in a Communication and Writing Aids Open House at Holland Bloorview. It's an opportunity to meet other parents, share experiences and learn about supports. Call ext. 3679 to register for this Nov. 1 evening event.

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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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'I manage Carly Inc.'

At the age of two, Carly Fleischmann (centre) was diagnosed with severe autism and an oral-motor condition that prevented her from speaking. Doctors predicted that she would never develop beyond the abilities of a small child. Then, at the age of 10, she had a breakthrough when she typed a message on her therapist’s laptop. Seven years later she’s in a gifted program at a regular Toronto high school. Carly’s Voice: Breaking Through Autism, is a new memoir written by her father Arthur Fleischmann, which includes much of Carly’s writing. I interviewed Carly’s mom Tammy Starr (photo right, with Carly's twin sister Taryn left) about their experiences.

BLOOM: How does it feel now that the book has come out?

Tammy Starr: I’m very proud of the book. I knew Arthur had written a lovely and important book. But for me it was nerve-wracking. Even though my life has been public in my role as an advocate for Carly and other families with children with autism, this was very personal. I’ve been out there as a fighter, but I’ve never had our personal life revealed to this extent.

BLOOM: I understand that initially you didn’t read the book. Why?

Tammy Starr: I started to read it a number of times but each time I started to cry. It was too hard to take. I knew the story – it was my life – but I found it difficult to relive. It was hard enough to go through it the first time. This book took a lot out of Arthur emotionally. I never would have been able to write it.

BLOOM: I’ve only just begun the book, but I can see that Carly having a twin, Taryn, would accentuate the differences in their development and also in how people treated them.

Tammy Starr: You can see how one is living a typical, full life on a very normal trajectory and the other one is being left behind in many ways. Carly wasn’t able to hold her ground or keep up with peers, but also, people who knew I had twins would invite Taryn to their child’s birthday party and not Carly. At one point Carly was too young to understand, but obviously there came a time when I’m sure she understood what was going on.

BLOOM: It seems they have a special bond.

Tammy Starr: More than I can understand. It comes out in the birthday messages Carly sends to Taryn. The other night Carly was having a hard time falling asleep and kept coming out of her room and we were really tired. Taryn was still up and running around, and I said: “Could you please help us?” I don’t generally ask her to help us. I want to keep her relationship with Carly as a sister not a caregiver. The next thing I knew Carly was giggling and giggling in her bed and Taryn left her room and Carly didn’t come out. They have this closeness, this bond. I really didn’t know in the beginning how much Carly meant to Taryn. I didn’t know if she was an embarrassment or what. There were times in the tween years where Carly did embarrass Taryn, but all kids embarrass their siblings and Taryn’s past that. It’s hard for Taryn. On the one hand, she has all these friends and an active social life and just got her G1 driving licence. And when she leaves the house she leaves her sister behind. But I’ve never said “Please include Carly.” That’s not fair to either of them. Carly doesn’t want to be somebody’s burden.

BLOOM: What were the first 10 years of Carly’s life like, before she could type?

Tammy Starr: She wasn’t aggressive, but she was destructive to things. You could never leave her alone. She didn’t stop moving. We used to say she was worse than the Energizer bunny. She had these compulsions pushing her and she wouldn’t sleep and we’d lie with her in bed. At 1 or 2 in the morning we’d think she was just about to drift off and she’d bolt up in bed and start emptying her dresser. Even though we were fortunate to have help over the years, it was a 24/7 proposition and we always had to be on our guard. If someone wasn’t with her, she wasn’t safe by herself.

BLOOM: You mentioned that you and Arthur had different roles in raising Carly. Can you explain?

Tammy Starr: In general I’m Carly’s business manager. I manage Carly Inc. I’m the fighter and I’m the one out there in court, but I’m not her therapist or caregiver. I’m her mother. I make sure everyone is there and everyone shows up and all the pieces are in place. But I’m not the one that delivers her programs. I’m not a patient person. I’ve also been sick a lot. I’ve had chemotherapy twice since the girls were born, as well as depression. Arthur has much more physical and emotional stamina to be in the trenches with Carly. He’s been closer to her on a parenting level. I’m the one who gets all the experts around the table for a team meeting.

BLOOM: What has been key in unlocking Carly’s communication?

Tammy Starr: The collaboration and dedication and imagination of her two main therapists – Howard and Barb – in terms of delivering programming to her through an Applied Behavioural Analysis (ABA) lens. They were constantly brainstorming about what they’d done and what was next. They never gave up on her and always pushed her. She had a high level of consistency and intervention over many years. All of Carly’s waking hours were delivered in an ABA environment.

BLOOM: What about technology?

Tammy Starr: The two main ones she uses are WordQ, a word-prediction software developed at Holland Bloorview, and Proloquo 2 Go, a communication software. WordQ allows her to type faster. With Proloquo, Carly will anticipate the words or phrases she wants for different activities and write them on her laptop, and then Howard will program them into Proloquo. Before we went to Los Angeles over the March break, she thought of specific things she’d want to say knowing who she’d be meeting. And before she went to camp she created lots and lots of pages to ensure she wasn’t misunderstood. For example, she has comments like “I need a break” or “Don’t take this personally. It’s my obsessive-compulsive disorder (OCD).” It allows her to explain herself to the world.

BLOOM: What did you learn about Carly after she began typing that you didn’t know before?

Tammy Starr: A ton. We knew she was smart and learning all the time. But we didn’t know she was just like her sister Taryn, except she has this body that doesn’t cooperate. Her brain and her sense of humour are like any other typical kid. I think we’re going to find that common stereotypes about people with autism are so off the mark. We learned Carly has so much empathy and concern for other people and wants to help other people. The idea that she’s closed off and not wanting to be a part of things is a bunch of crap. These kids want to be part of the world and they’re very sensitive and emotional. But they might not be able to show it. We learned Carly was loving and very aware of everything that was going on, but she just couldn’t communicate it. Being non-verbal doesn’t mean being disengaged or not aware or spaced out. It means your mouth doesn’t work. I feel badly about things I said in frustration or anger in the past because we didn’t know how aware she was.

BLOOM: What’s something you had wondered about Carly that you asked her after she began typing?

Tammy Starr: One of the things I said was “What do you think of autism?” She wrote: “I have it and people don’t want to see it.” At the time her self-esteem was very low.

BLOOM: What does Carly’s breakthrough mean for other children with autism?

Tammy Starr: We have to assume that that child understands everything you’re saying and speak to them and treat them like any other child. People still speak to Carly’s therapist or me, instead of talking directly to Carly. As Carly says, people talk in front of her back! You can never judge a book by its cover. Never take anything about these kids at face value. There are kids in there and when parents see glimpses of light and intelligence they’re real. And you have to go on that and believe it.

BLOOM: How would you describe Carly as a teenager?

Tammy Starr: She wants to be a typical teen like everyone else. She wants to go shopping and talk about boys and fit in. She has the same hopes and dreams in terms of school and travel and relationships. She and Taryn both want the same types of things.

BLOOM: How did Carly catch up academically once she began typing?

Tammy Starr: She’s had little formal academic exposure. It’s been in fits and starts because of placements that worked or didn’t work. But she has a photographic memory and it permeates everything. “I’ve never forgotten anything I’ve heard or seen,” she says. She says she can’t look at things straight on because her mind takes 10,000 pictures. She’s in a gifted program now and she takes a lot of the social sciences. She has an educational assistant with her. The curriculum is modified so that the teacher is satisfied that she knows the work. If there are 50 questions but she can show she knows the material in five to 10, that’s what she does.

BLOOM: What are her dreams for the future?

Tammy Starr: When she first started writing she said she wanted to work in a bagel store. Now she’s intent on going to the University of California at Los Angeles. We went on a tour while we were there recently. She loves interviewing celebrities and part of me thinks she will be doing something that involves journalism and writing. Temple Grandin is her hero. So perhaps she’ll do something similar in terms of writing and lecturing and travelling.

BLOOM: You mentioned that Carly struggles with OCD.

Tammy Starr: When she was 11 she was covered in bruises and we had her admitted to SickKids and they said she’s self-injurious and one doctor thought she was attending to voices. That made us laugh. Later on, Carly told us she was slapping herself to stop herself from doing something more destructive – like stripping the beds or emptying the armoires. It was a coping strategy for the OCD. She was trying to manage her inner compulsions and anxiety. Her OCD is something we still work on with her occupational therapist and social worker.

BLOOM: Have you been able to find any balance in your life as a parent?

Tammy Starr: When I’m in Toronto it’s full throttle and all-consuming. I get out of town when I can and I call it my autism-free zone. I have a good network of friends, although I tend to isolate a lot.

BLOOM: Tell me a bit about your autism advocacy work.

Tammy Starr: I have a strong sensitivity for the underdog and to not getting anything less than what a child needs. I haven’t always felt like I fit in and I was bullied when I was a child. So I’ve worked hard to advocate for families in the province who don’t know the ropes. The part I find frustrating is that there doesn’t seem to be a new generation of parents of kids aged five or six picking up the gauntlet.

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