If you could read my mind

Parents of children who can’t speak or gesture understand why a device that decodes likes and dislikes by measuring brain activity ranks as one of the 25 Ideas That Are Changing the World in a Toronto Life Magazine feature this December.

Idea number eight is an optical brain imaging system developed at Bloorview that decodes preference – with the ultimate goal of opening the world of choice to children who can’t speak or move.

Wearing a headband (see photo above) fitted with fibre-optics that emit light into the pre-frontal cortex of the brain, adults were shown two drinks on a computer monitor, one after the other, and asked to make a mental decision about which they liked more.

“When your brain is active, the oxygen in your blood increases and depending on the concentration, it absorbs more or less light,” says Sheena Luu, the PhD student who led the Bloorview study under the supervision of biomedical engineer Tom Chau.

After teaching the computer to recognize the unique pattern of brain activity associated with preference for each subject, Luu accurately predicted which drink the participants liked best 80 per cent of the time.

The work was published in the Journal of Neural Engineering in February and is groundbreaking because preference was detected naturally – from spontaneous thoughts – without training the user.

Most brain-computer interfaces require users to do an unrelated mental task – such as figuring out a math equation or singing a song – to indicate a response such as yes. This can be challenging for a child who doesn’t understand cause and effect or for people with developmental disabilities.

I had a fascinating opportunity to see the latest progress with the infrared brain imaging system last Friday.

Ka Lun Tam, a research engineer in Chau’s lab, demonstrated how thoughts can be used to express intention or activate a switch that controls a computer or communication or household device.

He donned the fibre-optic headband, with a spray of a dozen red and yellow cables cascading down his body. Yellow lines emit light into parts of the brain activated during singing. Red ones detect the amount of light that bounces back.

Then Tam played a computer matching game. Two photos at a time were presented on the screen – things like a cyclist and a swimmer. Sometimes the photos were the same, sometimes different. If the photos matched, Tam sung a fast-paced song in his head. He chose “I want you” by Savage Garden because of its frenetic beat.

When the photos didn’t match, he let his mind go blank.

In the bottom left of the screen, a circle appeared in green or red – green indicated a photo match was detected by Tam’s thoughts and red the opposite. The circles grew from small to large, depending on the strength of the signal.

How did the system know Tam was indicating a match? Singing gave certain parts of his brain a workout, causing oxygenated blood to flood those vessels and absorb more of the infra-red light.

The circles act as feedback for the user, indicating that mental singing – or silence – is triggering the signals.

Tam is still getting used to the system and says that while some days it’s bang on, other times it doesn’t read his mind correctly.

The quick response of the circle – indicating whether or not there’s a match – is surprising, Chau says. “The blood-flow response is slow. It takes about 10 seconds to evolve. So we’re pleasantly surprised that we can generate a channel signal in a couple of seconds. That means the system is detecting a change in blood flow before the entire response.”

Chau says the team will explore other mental tasks that can generate responses. “For example, maybe it’s a child thinking about their pet or a TV show they like.”

While the research is in its early stages, Chau envisions a portable system in future using a forehead sticker with light sensors.

The research is part of Chau’s body-talk research, which aims to give children who are “locked in” by disability a way to express themselves through subtle physiological processes like breathing pattern, skin temperature, heart rate and brain activity.

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In the trenches

Mothers of teens and adults with autism are as stressed out as combat soldiers, according to a study published in The Journal of Autism and Developmental Disorders and reported yesterday on the New York Times Motherlode blog.

Researchers followed a group of mothers and their children for eight days, interviewing moms at the end of each day and on four days measuring hormone levels associated with stress. They found the level of chronic stress experienced by these mothers was similar to that of combat soldiers. And the greater the child’s behaviour problems, the worse the mother’s stress.

My son doesn’t have autism, but I have to admit to feeling “in the trenches” this morning when I got a phone call from his school. Ben is in a class for kids who are deaf and hard of hearing in a high school for students with mild intellectual disability.

It was the principal, asking if Ben had mentioned anything last night about an incident that happened at school yesterday. He hadn’t.

Apparently the class and a few staff went to the park at the end of the day. Ben reached down and picked up a cigarette butt. I’m not sure if he did put it to his lips, or was going to, but one of the support staff was angry enough to drag him across the playground and push him into his wheelchair.

Two other staff reported that person to the principal and she was sent home when she arrived at work this morning. Then the police were called and a report was filed.

I was asked by the police to look for bruises or scratches on Ben tonight (I hadn’t noticed any last night, but I wasn’t really looking).

I couldn’t imagine which of the staff had been involved because they all seemed excellent when I met them at a recent parent night.

When the police told me, I could only picture a warm, energetic, motivated woman I thought was absolutely delightful.

I felt horrible for Ben and how he must have felt. I felt badly that he hadn’t tried to tell us what had happened, or perhaps he felt he couldn’t. I wondered if perhaps the situation was overblown. And I couldn’t help feeling sad and sorry for the staff person involved, who I imagined was sitting at home feeling as terrible as I was.

And then I couldn’t help feeling like I wished this wasn’t happening to us, wasn’t something we had to deal with. I couldn't help feeling shame. I knew my son was a challenge, but was he that impossible?

My hands shook and my chest ached. There I was, in the trenches.

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My son's riches

I call them angels.

Exceptional people who have been drawn to work with my son Ben and who have surpassed all expectations.

There’s a long line of workers. ‘Worker’ is a misnomer and inadequate to describe those who have been teachers, visionaries, therapists and coaches in their own right.

There was Kathleen, a bouncy, bubbly young woman who spent six years with Ben – transforming herself into a speech therapy, technology, sign language, literacy and inclusion expert. Kathleen accompanied us on our trips to the U.S. to see specialists and was Ben’s special needs ‘assistant’ (another misnomer) at school. Kathleen thought the world of Ben, and we thought the world of her. She went back to university to become what she had always been – a teacher.

There was Coco, a blind-deaf intervener who became our sign-language instructor and went into Ben’s school to teach the other kids sign because the school board would not. Over the years, Coco became a loved member of our family and our children’s legal guardian. Last summer, she returned from her new home in the Dominican Republic to take Ben to his first overnight camp (see photo above), a true breakthrough.

There was John, a brilliant math professor who volunteered to do math with Ben. John had written a book about making math accessible to all children. He taught Ben fractions and Ben wanted to work for him. Nothing made me happier than telling Ben: “The math professor says you’re smart.”

And the list goes on.

Whenever I am feeling down about Ben’s challenges or lack of friends, I think about how one boy was able to attract these human jewels, like a magnet, and make them shine.

Who are the angels in your child’s life?

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A cross-country quest for therapy

In 2006, Stacey and Jonathan H. uprooted their family from Ontario – where they had family and friends and Jonathan worked as a teacher – to Calgary, a province Stacey had never visited. The year before, their twins Will and Owen, 2, were diagnosed with severe autism and they were still on a wait list for publicly-funded applied behaviour analysis (ABA) therapy. The family moved west in the hopes of getting co-ordinated, provincially funded ABA intervention, and other services. I interviewed Stacey (above with Owen, middle, and Will far right, now 6, Jonathan and Jake, 8, far left) about how the family made this decision, and how they’ve fared.

Me: How did autism affect the boys when they were first diagnosed?

Stacey: They were both completely lost in their own worlds, non-communicative and had unusual behaviour. Will ate rocks and picked every loose thread out of our couch until it had to be thrown out.

Me: When did you realize you couldn’t get the ABA and other supports the boys needed?

Stacey: There was a wait just to get the diagnosis. I started voicing my concerns prior to their first birthday, but they didn’t have an assessment till they were two years and four months. They were deemed eligible for early intervention, but then were put on a wait list and nothing happened. I quickly recognized I had to surround myself with other parents of children with autism. We got involved with a group of parents and that’s where we learned about families whose kids had been on the wait list till they were age six, which was the cut-off in Ontario. We learned we couldn’t expect anything in terms of funded ABA services.

Me: What did you do for ABA services?

Stacey: We paid privately for 20 hours a week of ABA. For both boys, that cost about $7,000 a month. We wanted the boys to have 40 hours a week, but that would have cost over $160,000 a year.

Me: How did the lack of funded services and the financial pressures affect your family?

Stacey: It was devastating to feel like we couldn’t meet the needs of our kids. My husband felt like he couldn’t provide financially. I felt like I was an educated person, yet I couldn’t get through a day with my own kids. Because the boys were so challenging, doors were closed everywhere – even for things like babysitting or daycare. We had to reach out to family and friends for financial help. It was terribly humbling, and also humiliating. Revealing that we were in need made people uncomfortable. We lost many, many friends, but we also gained friends we didn’t know we had.

Me: When did you first think seriously about moving to find publicly-funded services?

Stacey: The tipping point came when a group of our friends held a giant fundraiser for the boys at a pumpkin farm. They sold tickets and had a pig roast and games and activities. Hundreds of people showed up and we raised $15,000. It was overwhelming and inspiring. But then I realized it would only cover one month of therapy and the boys would need help for the rest of their lives. It seemed a huge amount of money, but it was just a drop in the bucket. That put us into desperate panic mode to see if we could move to get funded services.

Me: How did you settle on Calgary?

Stacey: I didn’t realize at first that services were different from province to province. Then I read stories about families moving to Alberta. I made a call to a children’s hospital in Calgary and found out they were holding a resource fair for children with autism. All of the ABA service providers would be there. We couldn’t afford it, but I booked a plane.

At the fair, we were offered choices of government-funded ABA agencies that we could work with. In Ontario, we were on our own to figure things out with private providers, but in Calgary the agencies, the doctors and the government had co-ordinated their efforts to make sure everyone got the optimum program possible.

I found an agency that offered a government-funded, full-time ABA program that included half days at home and half days in a preschool, which was exactly what we wanted. The agency said that if our kids were eligible, we could sign up with them and they would help us through the process.

We moved in July, and I had a social worker in my home within a week, assessing our needs. We went before a multidisciplinary panel in August that oversees ABA services, and services for the boys began in September.

Me: Were there other differences in funded services in Alberta:

Stacey: In addition to specialized ABA services, the government puts an enormous amount of money into preschool funding for all children with special needs, so you can access preschool programs run by people who know how to work with our children. We were also automatically eligible for family support services, which included expensed funding for community, behaviour and respite workers. We even received funding so that our older son, who had had a hard time with the move, could receive counselling. Any extraordinary costs can be reimbursed.

Me: Why do you think there's a strong commitment to services for children with autism in Alberta?

Stacey: There’s a different mindset here. Early intervention is believed to be a right of children, and that if you intervene early, there won’t be such a financial burden on the province in later years. The other huge difference is the co-ordination of services. For example, when I met the social worker a week after we arrived, she immediately connected us with a pediatrician and a feeding clinic. All of the players here work together.

Me: What was the greatest challenge in moving your family?

Stacey: The biggest problem was leaving family and friends. They had not only supported us, but been a tremendous support to the boys. The likelihood of the boys forming their own support system in Alberta was slim, but at least in Ontario they had that built-in core group of family and friends that loved them.

The other major challenge was financial. As a teacher, my husband wasn’t going to make more money in Alberta, but the cost-of-living is higher. We sold our house in Ontario for $140,000 and had to buy a house that cost almost half a million dollars. We traded one expense for another, but at the end of the day we got the services for the boys we never thought we’d have.

Me: How has the move benefitted the boys?

Stacey: In every way. They don’t have parents who are living in constant stress. It eased the tone in our household. We’ll always have stress, but not the same kind of desperation, when you have no options.

In terms of intervention, I don’t like looking back to consider what their lives would have been if they didn’t have therapy. Four years ago, I had boys who wouldn’t look at me, who wouldn’t let me touch and hold them. Today I have little boys with challenges. Will and Owen have personalities, they experience emotion and they experience life with us and their brother.

Me: What is the situation like now for families considering a move to Alberta for services?

Stacey: We came at the perfect time, but in the last three years, so many people have moved here that the caseload has increased hugely. If you go to a meeting here for parents of kids with autism, half of them have come from Saskatchewan, British Columbia and Ontario. The numbers are so great that Alberta seems to be becoming pickier with their intake process. If your child is high-functioning, you may not qualify for specialized ABA services. Each family has to assess their own individual situation to figure out what’s best for them.

Stacey writes a blog about her boys at Willowjak – "our family of five, with autism times two." Willowjak combines the names of her sons Will and Owen, now 6 who have autism, and Jake, 8, who is typically developing.

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This and that

This post is a mixed bag.

Saturday was the first night we went trick-or-treating with Ben in a wheelchair. We used to pull him around in a wagon (because he’s tiny), and he would hobble up the stairs to people’s doors or we would carry him on our backs.

But this year it made sense to use his new wheelchair, which he now uses whenever he’s out.

It was an eye-opener to realize how many homes were inaccessible, with two to three steps up to the path, and then numerous steps up to the door. Our house is probably the worst: we live on a steep hill and have about 30 steps up to our house (we bought the house when I was pregnant with Ben).

Most people didn’t come out of their homes to hand out candy. They waited until the kids got up to the door and knocked. So there were at least a couple of streets where we were forced to roll by every single house, without stopping, because we couldn’t make it to the door.

I’ve always thought of our neighbourhood as being welcoming and friendly. But it’s not from a wheelchair.

Check out this new web site about Fragile X, developed by a non-profit group of parents and professionals called the Fragile X Research Foundation of Canada. The group says this most common cause of inherited developmental disability lacks awareness and research funding. I hope we can interview one of the parents in the future.

And this new collection of stories by parents of children with disabilities looks promising: My baby rides the short bus: The unabashedly human experience of raising children with disabilities. It includes a piece by our guest blogger Elizabeth Aquino.

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