Thursday, June 25, 2009

‘This is Poppy. She’s my autism service dog’

Three weeks ago Jennifer Cluff and her family welcomed Poppy, a five-month-old yellow lab, into their home. The Cluffs are fostering Poppy for an organization called Autism Dog Services. Jennifer hopes that when Poppy’s close to two years, she’ll be ready to become a service dog for her son Connor, 5, who has Asperger syndrome.

I interviewed Jennifer, who lives in London, Ont., to find out about Poppy’s role.

Me: Tell us a bit about Connor.

Jennifer Cluff: He’s incredibly funny and incredibly smart, a really caring person who’s friendly and likes to be around others. He’s typical of kids with Asperger in that he has his little obsessions. He loves lego characters – especially batman – and he’ll role play things he’s seen in lego video games and then take that play into his own world where he becomes the characters. So he’s batman, I’m bat girl and the dogs are bat dogs.

Me: What are the challenges related to Asperger syndrome that you hope Poppy will address?

Jennifer Cluff: Connor has absolutely zero concept of dangerous situations. He might get so focused on something that catches his eye that he’ll run across the street in front of traffic, or bolt in a parking lot or in the mall. No matter how many times I talk to him about not talking to strangers, he doesn’t understand stranger danger the way other kids his age do. He has trouble understanding social cues and facial expressions and finds transitions stressful. If he’s working on something and the teacher says “it’s time to go to gym,” he’s going to have a melt-down if he hasn’t finished what he’s working on.

Me: How will having a service dog help?

Jennifer Cluff: Safety is a big thing. Poppy wears a vest with a belt that goes around Connor’s waist so he’s tethered to her and he also holds onto the handle on her vest. I walk behind and have the leash. If Connor was to bolt, I would give Poppy the command to stay and anchor him. The nice thing is that it gives the child a sense of independence because instead of holding their parent’s hand, they’re holding the dog.

Me: What about some of the social benefits of a service dog?

Jennifer Cluff: One of my biggest fears is bullying at school. I think the dog will bring positive attention to Connor and give him an opportunity to talk about something he enjoys. Service dogs can have a calming influence so I hope Poppy will help Connor with transitions. They can also be trained to interrupt repetitive behaviours – pawing at the child and helping them to stop. The bond that develops between kids and service dogs is unbelievable and we think that’s another huge benefit.

Me: What changes have you seen in Connor since Poppy arrived?

Jennifer Cluff: He will actually seek Poppy out to play with and go and get a toy for her. He loves to talk to people about his dog and will say “This is Poppy. She’s my autism dog. We’re fostering her.”

Me: What is involved in fostering a service dog?

Jennifer Cluff:
We make a commitment to care for the dog for 12 to 18 months, to socialize the dog and teach her basic obedience. Every two weeks we go to a class with the trainer. At about 12 to 15 months, the trainer will recall her for four to five months of intensive training. During that time, the trainer spends a lot of time working with the family and child.

Me: Once Poppy is fully trained, how would she work with Connor during the day?

Jennifer Cluff: She’ll go to school with him for the full day. The trainer will do presentations at the school so everyone understands her role and that when she’s wearing her vest, she’s not to be patted. We’ve already taken her to Connor’s karate class and it’s amazing how well the other kids accept and understand that the dog is working. When Connor comes home, Poppy will be more of a companion, although she’ll still be an extra set of eyes and hands for me, and will go with us when we go out anywhere.

Me: Are the schools receptive to service dogs?

Jennifer Cluff: I think there’s an initial fear of the unknown, and concern that this dog will disrupt the classroom. But other families tell me that once teachers see the dog in the school, trained, they realize the benefits.

Me: What does it cost to purchase a service dog?

Jennifer Cluff: It depends on the organization you work with. For us it’s about $18,000. Some local charities, such as President’s Choice Children’s Charity, have been very supportive to families, and in some cases have fully funded service dogs. As a family we are also running some small fundraisers and have a website.

Tuesday, June 23, 2009

'The Throwaway Child'

I'm reading a book called Matthew – about a boy who was born the same year I was, in 1964. When we were both 3, I was thriving at home in Toronto with my brothers, dad and full-time mom. Matthew, who lived in England, was also thriving. But because he had Down syndrome – his mother was driving him to an institution.

A string of doctors – some famous, his own father and family friends were convinced Matthew’s presence would destroy the family and, in particular, damage his older sister.

Writes Anne Crosby: I...put in the motorcar...(Matthew's) blue pedal-car. He sat his constant companion, a velvet lady pig, behind the steering wheel. It was almost unbearable to sit beside him, witnessing the pleasure he was feeling as we drove toward the hospital. He liked being driven through the park and he was delighted that we had his car inside my car. "Two drivers, Mum."

That charming reflection of Matthew’s – on his way to what his mother later refers to as incarceration – makes me weep.

I have a child who has mental retardation, and, despite his challenges with academic learning, it’s the beauty of his personality, his spirit, his intelligence, his humour and his unique take on life that most defines him. He’s the kind of kid who could have triumphantly signed – because he doesn’t speak – “two drivers, Mum.”

I can't imagine living in a time when raising my son at home would cost me my marriage, family and friends, and pit me against doctors who said my child needed to be with his “own kind."

So I was taken aback when I read results from two new studies about public attitudes to people with mental retardation.

In Israel, more than 50 per cent of 750 adults said they would not allow people with mental retardation to live in their immediate vicinity, according to a survey published Friday by the Welfare and Social Services Ministry's Department of Care for the Mentally Retarded. The study also found that more than 50 per cent do not want their children to have contact with children with intellectual disabilities in school. Forty per cent believe children with intellectual disabilities should live outside the family home.

In Brazil, a new study of over 18,500 students, parents, principals, teachers and school staff in 500 public schools revealed that 98.9 per cent want to keep a social distance from people with intellectual disabilities.

In 2007, a national survey of almost 6,000 American middle school students published in Exceptional Children found that almost 50 per cent wouldn’t sit next to a child like mine on a school bus and 73 per cent wouldn’t talk to him about personal things.

When I was growing up, children with intellectual disabilities didn’t go to my elementary or high school. The Exceptional Children study indicates that students today also have surprisingly little contact with peers with intellectual disabilities. Less than 40 per cent had had a student with an intellectual disability in their elementary or middle school.

The researchers note that exposure is not enough to lead to positive attitudes. “Contact and exposure that provide youth with the opportunity to witness the competence of individuals with intellectual disabilities” is the pivotal factor, the study authors say.

Isn’t that another way of saying if only kids with intellectual disabilities could be more normal in their achievements, attitudes would improve?

Measuring a person’s value against a dictionary definition of competence seems to feed into the counsel that a famous child psychologist gave Anne Crosby, mother to Matthew, the boy with Down syndrome who was sent to an institution: “Here is the important child, the bright and whole one,” he said, nudging her typical daughter. “We can safely say the other is The Throwaway Child.”

It seems to me that we need to develop a new scale for measuring personal qualities that make us worthy human beings.

Thursday, June 18, 2009

On the trail of an autism treatment

I was interested to learn that Dr. Evdokia Anagnostou (above) – a child neurologist at Bloorview developing a clinical research program in autism – was one of the authors of the new study showing that the antidepressant Celexa doesn’t work for repetitive behaviours in children with autism.

Celexa is one of the newer drugs in the selective serotonin-reuptake inhibitor (SSRI) class of antidepressants – which are the most commonly prescribed drugs for children with autism.

The results that showed Celexa is not useful in treating repetitive behaviours in children with autism were a surprise even to the authors of the Archives of General Psychiatry study, which was published this month.

“We couldn’t believe our eyes,” says Evdokia, who was working at the time at the Mount Sinai School of Medicine. “We all have this ‘gestalt’ that this drug is effective at decreasing repetitive behaviours, but the truth is that it doesn’t work better than placebo."

In the American study, 149 children with autism aged five to 17 received either Celexa or a placebo over three months.

Researchers wanted to know if Celexa reduced behaviours that can interfere with a child’s ability to learn – like compulsions, restricted interests and hand flapping.

The study found that about one out of three children in both the Celexa and control groups showed fewer or less severe repetitive behaviours, but there was no significant difference in improvement between the groups. And Celexa was significantly more likely to cause impulsiveness, inattention and sleep problems.

The study was the largest randomized trial of a medication to treat autism.

Evdokia was recruited to Bloorview last year and part of her autism research focuses on testing alternative compounds like fish oil.

“There’s a new movement within the research community to look at alternative compounds in a scientific way,” Evdokia says. “Parents and physicians have started using these compounds without any evidence that they’re safe or effective. We want to test them scientifically.”

This fall, she’s conducting a randomized control trial to study the impact of omega-3 fatty acids on preschoolers with autism.

Thirty-five preschoolers will receive fish oil and 35 will receive a placebo over six months. “We want to see if the omega-3 fatty acids have an impact on the core symptoms of autism – social communication deficits and repetitive behaviours – and on associated symptoms like aggression and anxiety.” Because fish oil has an excellent safety profile, “we can target the very young, where usually we are uncomfortable prescribing traditional medications.” There’s some evidence to show that fish oil can benefit children with neurodevelopmental disabilities, but the compound hasn’t been tested using statistical methods, Evdokia says.

In the meantime, if you're a parent of a child with autism taking Celexa, ask your doctor what symptoms it was intended to treat. "We found it’s not useful for treating repetitive behaviours, but Celexa is also used for anxiety, and we didn't test anxiety in this study," Evdokia notes.

Evdokia says cognitive-behavioural therapy can be helpful in reducing repetitive behaviours, but it's not covered by Ontario hospital insurance and is expensive. And there are few pediatric psychologists with experience treating this population.

Do you have a child whose treatment was affected by the findings on Celexa?

Monday, June 15, 2009

Turning the lens around

Conventional art can be frustrating for kids with disabilities who have great ideas but poor fine-motor skills.

But digital photography is proving more accessible. The photo above was taken by a participant in Light Writers, a 10-week digital photography course for youth with and without disabilities at Bloorview’s Centre for the Arts.

“Digital cameras are accessible and don’t require the fine-motor dexterity needed for drawing or clay,” says commercial photographer Brenda Spielmann, who runs the program. “They can be used in a wheelchair or with the child operating a switch.”

Brenda says the purpose of Light Writers is “to teach photography as an art medium, to empower the children and to give them an option for a vocational skill.”

She notes that children with disabilities are often the subject of photos “and it’s important that we change the lens around and give them the skills to photograph their lives from their own point of view. In this program, they’re not outsiders anymore. They’re in control.”

The program is called Light Writers because “photography means drawing with light and the usage of light is a big component. I try to teach them to look at light and how it falls on different subjects – it could be street scenes, people they love, objects they like.”

The class is limited to six participants and they work in teams of two at three computers.

One project involved the group collaborating with children on Bloorview’s complex, continuing-care unit. The photography group would send a photo up to the unit and the kids on the unit would write a related poem and then send it back. Sometimes the inpatients would send a poem down and the Light Writers group would shoot a picture to accompany it. “They didn’t know each other and that was the beauty of it,” Brenda says. “There was no expectation, they weren’t visualizing the other person. They were working purely on the creative side.”

Brenda wants to expand the Light Writers program across Canada, and would love to connect with photographers interested in getting involved, or families. E-mail her at

Or post a comment about your child’s experience with digital photography.

Tuesday, June 9, 2009

'The biggest disability we have is low expectations'

I had the privilege of interviewing Janet Steffy, mom to Joe Steffy, who operates Poppin’ Joe’s Kettle Korn in Louisburg, Kansas this morning. Joe, 23, has down syndrome and autism, and was the focus of a recent U.S. News and World Report story: How 1 Autistic Young Man Runs a Business.

Joe communicates with gestures, pictures and a voice-output device, and is a shining example of how a young adult with significant disabilities can own and operate a business.

Janet and her husband Ray, retired farmers, have a message of hope for parents who fear their children won’t find productive work as adults.

They've certainly inspired me to look more closely at the idea of setting up a business one day for my son Ben, who has disabilities.

Me: When Joe was in high school, what were your hopes and fears for his future?

Janet Steffy: When Joe was 14 the transition team came into a meeting with a plan already put together: Joe would live in a group home as an adult and attend a workshop. Period. There was no discussion. Our nightmare was that because Joe is high energy and doesn’t sit still, he’d end up somewhere sedated, isolated and separated from the community.

Me: How did you respond to the school’s recommendation?

Janet Steffy: I was angry. But as parents, we can internalize these negative messages and become angry and bitter, or we can take positive steps to act on our child’s strengths and build on them. The biggest disability we have is low expectations, and that’s greater and more disabling to Joe than any disability that he was born with.

Me: How did you get the idea that Joe could run a business?

Janet Steffy: Ray took a Partners-in-Policy-Making class offered through the Kansas Council on Developmental Disabilities. One of the speakers was David Hammis (an advocate for self-employment for people with disabilities). He showed us how a person with significant challenges can operate and own a business – and still remain eligible for the Medicaid supports Joe will need for a lifetime. For Ray and me, it was like a light at the end of a dark tunnel. He showed us a model, and that’s what we built.

Me: How did you come up with kettle corn as a product?

Janet Steffy: Our family went on an Alaskan cruise when Joe was 14 and at a farmer’s market, Ray saw a long line of people waiting for kettle corn. We had never heard of it. Ray saw the different parts of the popping process and his mind started turning. After talking to the owner we purchased used equipment locally and started what we called a job exploration: “Can Joe work?” We set up in the driveway out of the garage and started popping and developing a product we were satisfied taking to the public.

Me: How hard was it for Joe to learn the ropes?

Janet Steffy: Joe learns by watching, he will do exactly what you do, and that is his strength. There are many processes in popping: setting the equipment up; filling the raw material into the containers to pop; measuring the ingredients and putting them in the kettles; stirring; dumping the kettle; sifting; letting it cool; bagging it and sealing it. As a result of his autism, Joe is very repetitive, exact and precise, and that was something to build on.

Me: Is Joe interested in the operation?

Janet Steffy: Joe is interested in many things, and as long as it’s something he can be active and moving and busy at, he’s busy. It took him a year or two before he got into the actual popping. We have a rule that if Joe owns the business, Joe picks what he does. If he hires you to help, and says “today I’m bagging,” and you’re doing the bagging, you do what he was doing before. We shift around what Joe is doing.

Me: Does Joe have a support person with him?

Janet Steffy: He has a support worker and his dad is the manager and also helps with part of it. Joe works five days a week, from 9 to 3. We have a licensed manufacturing site in our walk-out basement. Joe doesn’t live at home anymore – he rents his own small home and a support worker lives with him. He’s a taxpayer – isn’t that cool?

Me: Where do you sell the kettle corn?

Janet Steffy: In the summer he works at festivals and events and year-round he stocks six retail stores that buy his products every week. He has five flavours.

Me: How challenging has it been for you as parents to support Joe in the business? Are you retired?

Janet Steffy: Yes, we’re retired. It’s a mindset. We have to do it. We supported Joe’s sisters and brothers, doing the extra things that made it possible for them to do sports or music and we’re committed to doing this for Joe as long as we can. It does take an investment, but as a parent, you can spend your energy fussing and fuming because professionals don’t see potential in your kid, and you have a kid sitting around with nothing to do, or you can use your energy in a positive way. Then you’re happy, your son or daughter is happy, and your whole family is happy.
Me: How did you finance the start-up of the business?

Janet Steffy: Joe received over $20,000 in grants through national and state programs, including Social Security Administration’s Plan to Achieve Self-Support Program (PASS), Vocational Rehabilitation and the Kansas Council on Developmental Disabilities. We had to submit a five-year business plan.

Me: What impact has the business had on Joe?

Janet Steffy: I wish we had a before and after picture. He used to be a young man whose shoulders drooped, his chin was down and he was pretty sombre. Now he stands tall, with a smile on his face. He knows he’s contributing. When he’s out in public at a festival he loves stirring the kettle while people watch – he loves being Poppin’ Joe. He loves the identity and feeling of belonging with the other vendors he’s gotten to know at the festivals over the years. I love it when he goes to the bank and the clerk counts the money out with him. Joe knows that because he works he has his own small home. He has a golf cart and he knows it’s because he works. We have four to six part-time people who come in to help and Joe pays them – he signs the cheques and gives them the money. People look at him differently.

Me: What advice would you give to other parents who may be concerned about their child finding meaningful work?

Janet Steffy: Commit to your dreams and go for it. It won’t happen if you don’t step up to the plate with your son or daughter. Look at your child’s strengths and capacities and build on them. So often at meetings we’re reminded of everything our kid can’t do: he can’t do this, and he can’t do this. It’s so negative. Remember that the professionals who tell you what your child can’t do won’t be players once they’re out of school. And you’ll still have your son or daughter. Write out your child’s strengths and capacities and go for it. Help them to choose a business they love. There’s a young man in Kansas with autism who owns a lawn-mowing business. He just loves mowing grass and is doing so well. There’s another where the whole family is involved in a honey business with bees. These young people are vibrant, they’re alive, they have a purpose to get up in the morning. They have something to do, a place to belong.

Thursday, June 4, 2009

What makes my son 'enough'?

Earlier I blogged about the concept of The Enough House – and how it can help parents of children with disabilities let go of a fix-it mentality to intervention and instead feel richly blessed by who their children are, as they are.

I wanted to write about the things that make my son Ben ‘enough’ – which is another way of saying whole – in spite of his many disabilities.

He is enough when he surprises me by signing "happy Mom" on Mother's Day, and we both know what he’s trying to say.

He is enough when I type on the computer "If you could be anyone in the world, who would you be?," and he types back "Ben."

Or when he can't resist picking a dead dandelion and blowing the seeds to make a wish. Sometimes he can't blow hard enough to dislodge the seeds so he has to shake the flower in the wind. I wonder what he's wishing for.

Or when he stops on a busy street to acknowledge the elderly homeless man, sitting on concrete hooked up to an oxygen machine, and waves his "hello." It's just before Christmas and everyone's out doing last-minute shopping, but no one else allows the man to enter their vision.

Or when he arranges his many Star Wars and other characters in a complicated story montage on the dining-room windowsill, mapping intricate battles and dangerous escapes.

Or when he looks into my eyes – in silence – and we see each other. For someone who used to find the absence of sound awkward, and race to fill it with words, my son has taught me a lot.

Or when he has a giggling fit watching Tin Tin and his dog Snowy, perhaps imagining that he’s the one climbing the mountain or flying the plane.

Or when he walks away with the nurse to the operating room – knowing what it's all about – without looking back. When he was young, he’d carry a favourite object, like his butterfly net or fireman’s hat.

Or when he waits by the window on his birthday, signing "friends, where?"

Or when Halloween is still his favourite holiday – at age 15.

Or when he places an open book across his face as part of his nightly ritual.

Or when he finally sleeps and his extravagantly long eyelashes flicker over a dream. He floats. And I assume there’s no physical pain there, no anxiety about not being able to speak, no frustration that his hands won’t do what he wants, no feeling of being different. In his dreams, I hope everything is effortless.

Or when I feel his weight sink into me, and his body’s warmth is enough to make me happy.

Or when I can’t imagine one second of a world without Ben.

Monday, June 1, 2009

‘Graduation is perhaps the saddest day in their lives’

Last week, Karl Taro Greenfeld wrote a compelling op-ed piece in the New York Times about how services for adults with severe autism evaporate the day they graduate from high school: Growing Old With Autism.

Greenfeld is the author of the recently-released memoir Boy Alone, a book about growing up with his brother Noah, who has autism.

“He graduated from his special needs school on a bright, sunny Orange County day,” he writes in the New York Times piece. “…he was beaming, handsome in his bright blue cap and gown.

“But for the profoundly autistic, graduation is perhaps the saddest day in their lives.”

Like many adults with developmental disabilities and odd behaviour, Noah couldn’t get a job. His family tried unsuccessfully to find a day program where he could be productive and meet others. He wasn’t “high functioning” enough. The family couldn’t afford to pay for ongoing behavioural therapy. Despite his family’s best efforts, Noah regressed and became increasingly destructive to himself and others.

Hundreds of millions of dollars a year is pumped into autism research in the U.S., Greenfeld notes, but it’s all directed at children.

Adults aren’t on the radar, and it’s reflected in the lack of services and programs to support them.

I have six years to try to cobble together a worthy adult life for my son Ben, who’s now 15 and can stay in his special-needs high school till he’s 21. He doesn’t have autism, but he does have physical and developmental disabilities.

While we’ve made a lot of progress with programs like Bloorview’s Growing Up Ready – which aims to prepare youth with disabilities for independence in adulthood – there will always be adults with developmental or multiple disabilities like Ben who require lifelong supports.

My son needs constant supervision and someone who understands sign language to interpret for him. Where will he go during the day when he leaves high school? If my husband and I continue to work, who will support him during the day? How will we pay them? How will we find something meaningful for Ben to do?

I used to come up with wild ideas about how we’d create a business to employ Ben.

Two years ago we bought Ben a Bull Dog puppy. Without really giving thought to the practicalities, I started to envision Ben as a future Bull Dog breeder. We have a farm to retire to, breeders work online, and Ben loves computers.

However, once I gave this some serious thought, it became apparent that Ben couldn’t manage the physical side of caring for dogs – particularly when they’re puppies. He has joint pain and fatigues easily. He’d enjoy visiting with the dogs, but he wouldn’t enjoy cleaning up after them and feeding them, and he wouldn’t have the strength to train them (he struggles to walk his current dog).

Now that Ben’s in Grade 9, every time we receive a report card, we also receive a standard form that lists all of the courses required for an Ontario high school certificate. And beside each of these courses are typed big fat zeros – as if we need constant reminders that our child won’t graduate from high school and, as a result, won’t amount to anything valued in this society.

I want for Ben what I want for all of my children: the opportunity of a future filled with meaning, learning, joy and friendship. But when I read about what happened to Greenfeld’s brother Noah, I fear for the future and what it holds for Ben and our family.

New York Times health guide on autism