Arvada, Colo. (Thurs., Oct. 14, 2010) – Exceptional Family TV – the first web video series for and about families raising children with special needs – is premiering its second season on Friday, October 15 at ExceptionalFamilyTV.com.

Each Friday, a new short video will take viewers inside the lives of families affected by developmental and intellectual disabilities. In addition to telling the stories of families around the country, episodes will explore therapies and tackle topics that include parental disagreements, balancing between life and therapies and communicating needs to friends and family members.

The series is the brainchild of Nathan Charlan whose three-year-old son was diagnosed with cerebral palsy in 2007. After receiving the diagnosis, Charlan suddenly found it difficult to relate to friends and family members who had no experience with the emotional, social and financial issues he was facing. To find other parents going through similar experiences, Charlan turned to the Web where he created a blog and used his professional background in video production to document his emotional experience in short YouTube clips. The relationships he formed through the blog encouraged him to co-found ExceptionalFamily.com in order to give special needs families around the world a centralized place to connect.

Together with his wife Renee and son Zachary, Charlan interviews families affected by developmental and intellectual disabilities and edits their stories into five to ten-minute videos that are often deeply inspiring. The first season began in April with the story of Jack, a nine-year-old child with autism whose life was transformed when his mother put a video camera in his hands. Other season one episodes, which are archived on the site, include an interview with the Kemps whose daughter received stem-cell treatment for septo-optic dysplasia syndrome in China and a Skype conversation with Australian mother Meagan Cross who has taken great measures to advance the availability of information and research funding for Angelman’s Syndrome in her country.

Throughout the first season, Nathan and Renee received hundreds of comments from parents, family members and professionals who have been positively affected by the videos. Since launching, the Exceptional Family TV web site has grown to include multiple blogs written by parents, discussion boards and a Facebook Page where parents from around the world frequently weigh in on a variety of topics.

To view the 20-part season one series and to catch new episodes from season two please visit ExceptionalFamilyTV.com

Stave Off Cancer Naturally

“One review found that moderate activity, such as brisk walking 3 hours a week, reduced breast and colon cancer deaths by about 50%.” For the entire transcript, please click the link below:

http://www.prevention.com/medicalbreakthroughs2009/list/1.shtml

Study: Youth now have more mental health issues

“A new study has found that five times as many high school and college students are dealing with anxiety and other mental health issues as youth of the same age who were studied in the Great Depression era.”

http://health.yahoo.com/news/ap/us_stressed_out_students.html

Lead, Tobacco Exposure Linked to ADHD

“Prenatal exposure to tobacco smoke and childhood exposure to lead are linked to increased risk of attention deficit hyperactivity disorder (ADHD) in children, a new study shows.”

http://www.webmd.com/add-adhd/news/20091123/lead-tobacco-exposure-linked-to-adhd

http://pediatrics.aappublications.org/cgi/content/abstract/124/6/e1054

Aging population prompts rise in disabilities, says federal report

“An aging population and growing awareness mean the number of people living with disabilities is on the rise in Canada, says a newly released report.”

http://www.canadaeast.com/news/article/902843

Stand Up For Yourself! Six Quick Self-Advocacy Tips:

http://www.cpaont.org/faq/self-advocacy/stand-up-for-yourself-six-quick-self-advocacy-tips

Chief Public Health Officer Identifies Children’s Mental Health As Area for Concern

“The report said international data suggests more than 15% of children may be experiencing symptoms of a mental disorder, yet more than one in three parents would be embarrassed to admit their child has a mental illness.”

http://www.cmha.bc.ca/enews/enewsnov09.html#C1

Medical journal retracts study linking autism to vaccine

“The medical journal The Lancet on Tuesday retracted a controversial 1998 paper that linked the measles, mumps and rubella (MMR) vaccine to autism.”

http://www.cnn.com/2010/HEALTH/02/02/lancet.retraction.autism/index.html?hpt=Sbin

Human Resources and Skills Development Canada releases the federal disability report, Advancing the Inclusion of People with Disabilities 2009

“Overall rates of inclusion and educational attainment increased between 2001 and 2006, with the majority of people with disabilities obtaining a high school diploma. Education rates also increased by 12.3% since 2001, with 74.6% of working-age adults with disabilities obtaining a high school diploma or higher educational certification.”

http://www.nationtalk.ca/modules/news/article.php?storyid=26370

Daryl-Lynn Carlson, Financial Post Published: Friday, November 21, 2008

Sunny Gervan, of Design Revolution, has learned to manage her disability and forge a successful professional career.Brett Gundlock/National Post

More avenues are opening up for people with health challenges and physical disabilities to launch their own business. This is especially important as the term “disability” grows to include conditions that aren’t physically obvious, ranging from environmental sensitivities to chronic pain, learning challenges, behavioural disorders or even clinical depression.

Yet, there is a growing awareness that such individuals are more than capable of running their own business and in many cases, are better able to manage their condition when in charge of their own schedules and work commitments.

Sunny Gervan has quadrupled her client list within one year of launching an architectural renovation and restoration company, Design Revolution.

Having learned the business under the tutelage of her father, designer Mac Gervan in Kingston, Ont., Ms. Gervan had to relocate to Toronto to access health programs unavailable in that city.

She describes her condition only as a “hidden disability” that is episodic in nature and requires her to carefully manage her workload. To empower herself in the business world, she enlisted in programs funded by the federal and provincial governments, including a business incubator that caters to entrepreneurs with disabilities run by the Toronto Business Development Centre (TBDC).

“I learned how to organize, prioritize and be disciplined,” says Ms. Gervan, whose clients run the gamut from individual homeowners to contractors. They retain her expertise in a project management capacity, which requires her to liaise with government agencies and facilitate requisite permits and specifications.

She says the one-on-one coaching she received from the program’s business advisors was particularly beneficial. “They showed me ways I could make contingency plans to get through what are normal ups and downs for most people, but for me would be a little more exaggerated in terms of fatigue or the ability to get through a day. There are things that come up on a regular basis that I need to carefully manage. At the same time, I want to work because it makes me feel good,” she says.

“Because I’m aware of my health challenges and I’m very careful with my energy and my health, I’ve structured my business with safeguards and partnerships that create a solid foundation for my business and its growth.”

Ms. Gervan suggests people with disabilities are even more capable of surmounting challenges as they live with them daily. “Coming to the table with a disability or larger challenges, I come with coping skills and problem-solving capabilities and I know how and when to use them,” she says. “I have confidence that obstacles can be overcome.”

Rondon Rollocks worked as an events planner when he decided he wanted to be his own boss. Diagnosed with dyslexia, he turned to the JVS Learning Disabilities Centre along with the TBDC to strengthen his management skills before launching his own events company” Think.Event.Solutions!”

He says because his condition is hidden and he’s able to communicate well, “when I do ask for help people don’t necessarily believe I need it. It’s very difficult to explain to people what you’re going through when you’re doing better than most.”

Mr. Rollocks says the programs he used have helped him learn how to subcontract out tasks such as report writing, freeing him to facilitate business. He has helped plan premier events such as the Toronto Film Festival. “Now I can tell people that I’m dyslexic because it doesn’t matter,” Mr. Rollocks says.

“When people know you have an invisible disability sometimes they look for it when it isn’t there. If you don’t understand something it’s ‘oh that’s because you’re dyslexic.’ But no, it’s because you didn’t explain that properly.”

Carol Van Wyck became an advisor to the TBDC after visual and hearing impairments ended her successful belt and handbag manufacturing enterprise. She first launched a consultancy, RightReps, before being retained by the TBDC.

“It wasn’t until I arrived on my first day and was introduced as an advisor with disabilities that I realized that I had never considered myself to be disabled,” she says.

She also says individuals with physical challenges can often be more successful in business. “People who have to manage a disability are good managers and I think it prepares them even more to be a good entrepreneur.”

Katherine Roos, community programs manager at the TBDC, points to Statistics Canada figures that show the employment of people with disabilities has made some gains since 2001, rising to 53.5% in 2006 from 49.3%. She contends many of those people are starting their own businesses.

Resources across the country include: the Western Economic Diversification Program’s Entrepreneurs with Disabilities; the Entrepreneurs with Disabilities Network in Nova Scotia and Service Canada’s Entrepreneurs with Disabilities Program along with various provincial initiatives.

As well, organizations including the Centre for Entrepreneurship Education and Development (CEED), the Canadian Youth Business Foundation (CYBF), Business Development Bank of Canada (BDC) and various credit unions have programs to facilitate financing for disabled business owners.

Still, Ms. Roos says more needs to be done. “Entrepreneurs with disabilities have always started business with zero money, so they’re extremely entrepreneurial,” she says. “Self employment really is an ideal choice for people with disabilities but there needs to be financial resources dedicated to helping these entrepreneurs to level the playing field. We’re not talking about government handouts, but creating equal opportunities.”

© 2008 The National Post Company. All rights reserved. Unauthorized distribution, transmission or republication strictly prohibited.

There are few vacation locations in Nova Scotia that boast 100% accessibility. Mersey River Chalets near Kejimkujik National Park boasts it has a site that is completely wheelchair accessible. The numerous visitors with no disabilities fail to notice the accessibility of the site. That was the way it was designed.

If you are looking for an accessible place to get away this summer, look no further than this wonderful location that includes a nature retreat. Located in the heart of the Annapolis Valley, Mersey River Chalets has been designed to provide a barrier free vacation experience although it is not just for persons who require a barrier free environment.

Yes, it is true that all of the chalets have ramps and are wheelchair accessible including roll in shower units. The site also encompasses an accessible boardwalk, common building including a restaurant, and their offices. Throw in a number of other exciting experiences that just happen to be accessible such as Teepee’s for an outdoor camping experience and a boat dock and you can see that this is a place worth visiting.

The site is on the beautiful Mersey River with its own rapids on site. The board walk follows the length of the rapids and joins all the buildings.

CPA Member Tim Atkins is located on the site and he would be pleased to assist you in finding that wonderful all season vacation that is right for you. For more information call: 1-877-667-2583 or email them at info@merseyriverchalets.com. Please go to www.merseyriverchalets.com

LONDON (Reuters) – Passive smoking appears to significantly raise a person’s risk of dementia and other forms of cognitive problems, British and U.S. researchers said on Friday.

Their report published in the British Medical Journal found a 44 percent increased risk for people exposed to high levels of second-hand smoke, and is the first large-scale study to show the association between the two.

“Our results suggest that inhaling other people’s smoke may damage the brain, impair cognitive functions such as memory, and make dementia more likely,” David Llewellyn of Britain’s University of Cambridge, who led the study, said in a statement.

Research has tied passive smoking to a range of conditions including lung cancer and heart disease. More than half of children worldwide are exposed to second-hand smoke in their homes, according to the World Health Organization.

Previous studies have also identified smoking as something that increases the chances of dementia and other forms of cognitive impairment but it was not as clear whether the same held true for second-hand smoke.

Llewellyn and colleagues examined saliva samples from nearly 5,000 non-smoking adults over the age of 50 using data from three separate British health surveys.

Then they tested the saliva for cotinine — a product of nicotine found in saliva for about 25 hours after exposure to second-hand smoke — to measure exposure to cigarettes.

Tests aimed at gauging brain function such as verbal memory and keeping track of time showed an association between exposure to second-hand smoke and cognitive impairment.

One possible explanation is that exposure to second-hand smoke increases the risk of heart disease and stroke, conditions known to boost the odds of dementia and other cognitive problems, the researchers said.

“Given the ongoing international policy debate on exposure to second-hand smoke, this is a topic of major public health significance,” the researchers wrote.

(Reporting by Michael Kahn; Editing by Maggie Fox and Jon Boyle)

Feb 9,  2009

Regular smoking was linked to the most aggressive form of Cancer. Frequent or long-term marijuana use may raise a man’s risk of testicular cancer, American research suggests.
The study of 369 men, published in the journal Cancer, found being a regular marijuana user doubled the risk compared to those who never smoked it.
The results suggest that it may be linked to the most aggressive form of the cancer. A spokesman for Cancer Research UK said that no previous studies had found a link between marijuana and the disease.
What young men should know is first, we know very little about the long-term health consequences of marijuana smoking, especially heavy marijuana smoking
Dr Stephen Schwartz – Fred Hutchinson Cancer Institute
Testicular cancer is one of the most common cancers in younger men, with approximately 2,000 new cases each year in the UK.
Incidence in Europe and North America is far higher than in some other parts of the world, and has been rising steadily for no apparent reason.
Known risk factors for the cancer include previous injuries to the testicles, a family history of the disease, or suffering from undescended testicles as a young child.
The study from scientists at the Fred Hutchinson Cancer Research Center in Seattle is the first to look specifically at marijuana use in relation to the disease.
They studied 369 men aged 18 to 44, who had been diagnosed with testicular cancer, and quizzed them about marijuana use.
Their replies were compared to those from almost 1,000 apparently healthy control subjects.
Even after adjusting the figures to take account of the other known risk factors, marijuana use remained a clear risk factor for testicular cancer. Just being a marijuana smoker seemed to carry a 70% extra risk, while those who smoked it regularly, or had smoked from an early age, had twice the risk compared to those who had never smoked it.
A connection was made to nonseminoma, a fast-growing form of testicular cancer which accounts for approximately 40% of all cases, and tends to strike younger.

Puberty chance
Dr Janet Daling, one of the authors, said that puberty might be a “window of opportunity” during which boys were more vulnerable to environmental factors such as the chemicals in marijuana.

Testicular cancer
Testicular cancer is usually easily treated “This is consistent with the study’s findings that the elevated risk of nonseminoma-type testicular cancer in particular was associated with marijuana use prior to 18,” she said.
Another research, Dr Stephen Schwartz, said: “What young men should know is first, we know very little about the long-term health consequences of marijuana smoking, especially heavy marijuana smoking, and second, our study provides some evidence that testicular cancer could be one adverse consequence.”
The next step, he said, would be to look more closely at cells in the testicles to see if any of them had receptors set up to respond to cannabis chemicals.

Dr. Margaret Gatz, a professor of psychology, gerontology and preventative medicine at the University of Southern California, conducts research on interventions that may reduce the risk of Alzheimer’s disease. In a recent study, published in the January 2009 issue of the journal Diabetes, Dr. Gatz and her team tracked rates of dementia and diabetes in Swedish twins and discovered that developing type 2 diabetes before the age of 65 was associated with a 125 percent increased risk of subsequently developing Alzheimer’s disease.

1. How did you become interested in the relationship between diabetes and dementia?

Our research began with the question why some people develop dementia, especially Alzheimer’s disease, in old age, whereas others do not. Alzheimer’s disease is the most common type of dementia, followed by vascular dementia, which is generally caused by the same things that are risk factors for stroke.

Recently, a number of researchers have begun to show that vascular risk factors are important not only for increasing risk of vascular dementia but also for increasing risk of Alzheimer’s disease. This observation is particularly interesting because vascular risk factors are potentially modifiable. In other words, people might be able to reduce their risk of Alzheimer’s disease by attending to the kinds of health behaviors that reduce vascular risk, such as controlling blood pressure, cholesterol and diabetes. What led our research group to be interested in diabetes was the search for potential ways to lower risk of Alzheimer’s disease.

We were fortunate to be able to launch the Study of Dementia in Swedish Twins, building on the Swedish Twin Registry, to identify a population of twins where one or both members of the pair have developed dementia. Because the participants are twins, they are genetically similar, and that permits us to ask specifically what is different in the lives of those twins when one has dementia and the other does not.

2. What is most surprising about your findings?

Two findings are particularly intriguing. One is that diabetes was a risk factor for both vascular dementia and for Alzheimer’s disease, although the association was more robust for vascular dementia than for Alzheimer’s disease. The second is that diabetes that first occurred before age 65 was a far more important risk factor for dementia than diabetes that did not occur until after age 65.

While it is possible that long-term diabetes or its treatment may cause some sort of damage to the brain, it is also possible that the diabetes is not so much the cause of the dementia, but rather that diabetes and dementia each arise from the same environmental exposures and influences. For example, the same adverse early childhood conditions that lead to higher rates of diabetes (such as a low birth weight) may also affect brain development. Thus, we conclude in our paper that a complex interplay of genetic factors and environmental exposures throughout the entire life course likely affects risk of dementia in old age.

3. Do you believe that appropriate treatment for diabetes and good diabetes control could have an impact on lowering the likelihood of developing dementia? Or are prolonged treatments a potential part of the problem?

In our study, we could not separate diabetes from its treatment or identify those with well controlled versus poorly controlled diabetes. However, the association between mid-life diabetes and dementia was still significant after adjustment for diabetes duration. In other words, our results suggest that age of diabetes onset itself might be an important factor in later dementia risk, not so much how prolonged the diabetes treatment had been.

4. With rising rates of diabetes and longer life spans, do you suspect that there also will be a rise in dementia rates among the elderly?

Because dementia is an age-related condition, with longer life spans the number of people with dementia can be expected to rise, unless we make real progress in identifying modifiable risk factors and treatments for dementia. While there is much still to learn about the mechanisms behind the link between diabetes and dementia, it does seem likely that some of the same preventive steps that could reduce rates of diabetes will figure in discussions of how to reduce risk of dementia.

5. What is the next step in your research?

Currently, we are looking at other vascular risk factors for dementia: cardiovascular disease, obesity and blood lipids. In addition to focusing on dementia per se, we are also looking at the change in cognition with normal aging and the relationship of those changes to diabetes, obesity and blood lipids. We are particularly interested in inflammatory-related health conditions, because these might offer insight into the causes of Alzheimer’s disease and help to refine recommendations to people about how to reduce their risk for developing Alzheimer’s disease.

• Sean Forbes, 26, started a nonprofit called Deaf Performing Artists Network
• D-PAN creates American Sign Language-enhanced music videos
• Forbes: ‘A lot of the people … in the videos never experienced music before’
• Inspiration came during road trip when he was performing for friends in car

Friedrich Nietzsche said, “Without music, life would be a mistake.” Music is a big part of many people’s lives. For some, music is life.

But not everyone can have music in their lives, and one man is trying to change that for the deaf community.

Sean Forbes, 26, started a nonprofit called D-PAN, or Deaf Performing Artists
Network, which creates American Sign Language-enhanced music videos.

Forbes spoke with CNN’s Nicole Lapin about how D-PAN works. The following is an edited transcript of the interview.

Forbes: Really, the story here of how the whole thing came up was, I was in a car with three girls, and I went to school at Rochester Institute of Technology in New York. So we took a road trip to Gallaudet University, and on this trip I was singing all of these songs to my friends. And it’s just something I’ve been doing for a while.

So I’m signing all of these songs and all the sudden, a light bulb goes on above my head, when I’m like, wouldn’t it be cool if there were music videos with deaf performers in them, signing the song, signing the lyrics of the song. VideoWatch Nicole Lapin’s interview with Sean Forbes »

That was really where the idea started from, and I instantly went back to RIT, and I had a friend make me a video of me signing an Eminem song and that’s how the whole thing really started.

Lapin:Eminem, Christina Aguilera. You started translating really popular music videos, and tell me about these shoots, because this is a really big production you put on.

Forbes: Yeah. I mean, we had hearing and deaf people behind the scenes creating this. We had interpreters; there were probably about 20 people on the production set for these videos.

Lapin: What was the reaction from some people in the deaf community that never experienced music before, never experienced it before you and D-PAN?

Forbes: For me it was just awesome to see all of these deaf people who have never

been involved with music be involved in these videos for the first time.
A lot of the people who are in the videos never experienced music before. So for them, it was just an awesome experience, and they were really thrilled to be a part of it.

Lapin: And a lot of people on our Web site, CNN.com, are thrilled to be part of your experience, being introduced to your story.

A lot of questions also came in; I want to bring some to your attention. Ashley has this question for you Sean. “Has anyone ever told you that D-PAN would not be successful and if so, how did you respond?” I’m sure you had some haters out there.

Forbes: I’ve had, you know, I’ve approached a few situations before where they didn’t only tell me that D-PAN wouldn’t be successful, but they told me that I would never be successful as a deaf musician.

And I always laughed it off, because I knew deep inside of me, this is what I wanted. And I wouldn’t let anyone tell me no, I wouldn’t take no for an answer. So those people who told me no, look at me now.

January 30, 2009 at 12:00 AM EST

My son loved trains. I knew where his train was headed. I think I knew it from the time I asked the doctor if my baby would be like my mother, who killed herself. I wish I knew why she killed herself.

Whenever life became unbearable between the stops of Benjamin’s journey, I ran to my best friend Margo’s house in West Texas. My second husband, Chris, and I walked the dirt road that led from her house to the rocky plateaus and looked up at the stars, asking what to do next.

Ben wasn’t Ben any more. I kept trying to attribute it to adolescent hormones. I kept wishing that he was just a bad kid, that he would snap out of it or that I would find a counsellor, a psychologist, a psychiatrist, a teacher, a clergyman, a social worker, a recovering alcoholic who would communicate to him what he could not hear from us or even from himself — that he was worthy of living.

Ben’s eyes went from the bright blue-grey they had always been to a dull grey. At 12 and 13, he put away his model trains and hid in his bedroom — more often than not in the dark. He would no longer look me in the eyes. And if he did it was as his mouth was forming another lie. There were so many days when I wrestled with him, verbally, emotionally, physically. I kept trying to change my tactic — from Mom to friend, from friend to enemy, from enemy back to Mom.

“Mrs. Land, this is Kaufman Presbyterian Hospital, we have your son …”

He was 15 and had overdosed on alcohol and magic mushrooms, a combination that can produce arrhythmia. Ben wouldn’t tell any of the medical staff what he had taken. He had been found by the police in a ditch on the side of the road near the school. He was intoxicated but he was coherent enough to admit trying to drown himself.

It was the first time I saw my son on a gurney. He lifted up his head and asked, “Mama? Where am I?” and started to weep. It took us all night to get the truth out of him, while he lay flat on his back and hallucinated. That night it went from teenage rebellion to something much more frightening.

After hospital staff stabilized his heart rate, he was admitted to a private hospital for rehab — without his shoelaces, because he was a suicide risk. He received a supply of antidepressants and antipsychotics; the psychiatrists diagnosed him as bipolar. After two weeks, insurance would no longer pay for his hospitalization and he was discharged. We had meds and an aftercare plan, which included therapy and Alcoholics Anonymous meetings. Then Ben came home.

During this time, I was fortunate enough to get a seat on the board of a state psychiatric facility. I liked the hospital so much, I resigned my job as a bank loan operations officer and went to work for the hospital as a ward clerk. I took a $26,000-a-year pay cut because I wanted to understand our family’s fatal flaw — mental illness.

I worked on a geriatric ward. I saw what severe mental illness does to human beings who are 60 and up. I learned that some of the medication “tops out,” and watched patients who were left with neurological tics, stilted gaits and drooling. I thought I was there to learn about my mother’s form of psychosis. I foolishly told Ben what it was like for a schizophrenic’s moods to cycle. I told him how weary caretakers and family members become — and I told him that sometimes suicide is merciful.

One day I was at my job at the hospital when I thought I should call home. A man’s voice answered the phone and I was angry because my kids couldn’t have people in the house when I wasn’t there. “I am an EMT and we’re taking your son to the hospital; he’s overdosed.”

Ben had taken an entire bottle of antipsychotic meds. All I could do was stand there and rub his hair, the way I used to when he was sleeping.

He spent a couple more weeks in a different psychiatric hospital. The pediatric psychiatrist told me Ben was suicidal. “No, really?” I replied. What I wanted to say was: “Tell me what to do to fix him. Give him medication. Give him another therapist. Give him another psychiatrist. Give him another 30 days away from danger.”

One day I knew my son, and the next day I would look at him in the rearview mirror of my car and a stranger would be looking back at me. A stranger I began to hate because I didn’t understand what was happening to him.

Ben and his sister Katie were over at their dad’s house for the weekend. “Mom, I know you’ve been calling for Ben and I’m not supposed to tell you where they are. They’re at the ER.” Katie wasn’t about to cover anything up for long. Ben had shot himself in the hand with a pellet gun.

He said he had bumped it or dropped it or some lie, but I knew what he was doing. He was practising shooting himself. I lost it. I was financially, emotionally, mentally and physically at the end of my rope with the fight to keep Ben from hurting himself. And he was going to hide from me in a hospital and think I would pay for it again? No.

I like to tell people the reason I moved from Kaufman, Tex., to Sudbury (my husband’s hometown) was because I didn’t like George Bush’s politics. The real reason was I couldn’t take it any more. At 40, I ran away and left Benjamin in Texas with his dad and Katie.

The first two months were idyllic. I could sleep at night because there wasn’t a damn thing I could do if the phone call began, “Mrs. Land, we have your son.” I started walking, my marriage rejuvenated, and we were surrounded by family.

So when I woke up at 6:30 one morning and tears started, I didn’t know why. Then the phone rang. My husband was holding the receiver out to me. “SueAnn, it’s your ex. Ben shot himself. He’s dead.”

On Feb. 1, 2006, my 17-year-old son took a 20-gauge sawed-off shotgun, and the train left the station forever.

SueAnn Jackson Land lives in Sudbury.

From Tuesday’s Globe and Mail

January 27, 2009 at 8:54 AM EST

For Tammy Kliewer, learning that her two-year-old son Tavish had autism felt like solving a major puzzle. He had been non-verbal and “very much in a world of his own” his whole young life.

Yet the diagnosis didn’t explain his other behaviour: complete meltdowns, violently banging his head and biting his arms. “We could do nothing but restrain him when he went into a meltdown,” said Ms. Kliewer from her home in Barrie, Ont.

At about 4, he was diagnosed with a string of mental illnesses: anxiety, obsessive-compulsive disorder and self-injurious behaviour. But not before a number of health-care workers had chalked up his behaviours to autism.

“It was a cop-out to say it’s all part of the autism,” Ms. Kliewer says. “There’s a significant portion of autistic children who never bang their heads or bite themselves.”Seven-year-old Tavish Kliewer

Seven-year-old Tavish Kliewer plays in his bedroom with his sister Macie. He was diagnosed as autistic at age 2, but it took another two years before he was found to also have a string of mental illnesses: anxiety, obsessive-compulsive disorder and self-injurious behaviour. (JENNIFER ROBERTS FOR THE GLOBE)The Globe and Mail

Now, Ms. Kliewer knows that Tavish is one of many Canadians with a “dual diagnosis.” The term refers to people with a permanent developmental disability such as autism, Down syndrome or fetal alcohol syndrome who develop a mental-health problem such as depression, anxiety or psychosis.

Some estimates put the developmental disabilities rate at about 3 per cent of the population. Experts believe 38 to 50 per cent of this group go on to develop a mental-health problem.

But just getting the diagnosis – let alone treating its tangle of challenges – is a huge hurdle. Those with developmental disabilities may be non-verbal or have trouble communicating, so answering a doctor’s questions is nearly impossible. In some cases, what may look like a symptom of mental illness is the result of an untreated medical condition, such as an impacted tooth or a gastrointestinal problem. Symptoms are often chalked up to the disability by both doctors and loved ones.

“They’ll say it’s because of his developmental disability that he’s not interested in the world around him and prefers to sit and watch television all day,” says social
worker Susan Morris, clinical director of the dual diagnosis program at Toronto’s Centre for Addiction and Mental Health.

Even doctors who work closely with people with autism or Down syndrome find it challenging to refract possible symptoms through the lens of mental disability. “You have to do a great deal of interpretation and extrapolation,” says Vancouver child psychiatrist Vikram Dua, who specializes in treating young people with autism and mental illness.

When the clues don’t click, negative behaviours may increase, and doctors may prescribe sedatives, anti-psychotic drugs and tranquillizers without any clear diagnosis. Parents and doctors think, “Well, at least he’s not hitting people. We’ll deal with this later,” Dr. Dua says. “But it doesn’t get dealt with later.”

A new Canadian coalition of families and health-care providers, including Ms. Morris, has been formed to increase awareness of dual diagnosis. Since November, it’s been lobbying the Mental Health Commission of Canada to address this particular intersection of mental health and disability.

“Certainly, for a long time, developmental disabilities and mental-health problems were seen to be mutually exclusive,” says <strong>Krista:</strong> Flint, executive director of the Canadian Down Syndrome Society. She has personally stepped in to help people with Down syndrome who struggled to receive mental health care. Still, she says that since mental illness remains stigmatized, she urges caution. For instance, as more becomes known about the high rates of Alzheimer’s in those with Down syndrome, society is starting to look at
every person with Down syndrome and assuming they’ll get Alzheimer’s, Ms. Flint says.

In the meantime, there has been some progress in finessing the medical approach to potential dual diagnosis cases. A new diagnostic tool, Diagnostic Manual – Intellectual Disability, was created in 2007 by the U.S. National Association for the Dually Diagnosed in association with the American Psychiatric Association. The text translates symptoms as they appear in the general population into what they might look like in people with developmental delays.

Ms. Morris says there has been some early success with the commission, especially when dual diagnosis is framed as co-morbidity, the term for having two or more simultaneous medical problems.

At CAMH’s dual diagnosis clinic, which serves up to 300 patients a year, the hope is to rehabilitate patients so they can return to their families or community living.

Some provinces have created policies centred on how a dually diagnosed person should move through the system. A new version of Ontario’s 1997 guidelines, co-written by the Ministry of Health and the Ministry of Community and Social Services, is set to come out possibly as early as this week to further clarify this framework.

There are many cautionary tales that highlight the risks of incomplete diagnoses.

Jill Hepburn’s 28-year-old daughter has been living at CAMH for nine years (the average
stay is about four months). She was 13 when she was diagnosed with her developmental disability, Prader Willi syndrome – a genetic disorder characterized by small hands and feet, abnormal growth, insatiable hunger, extreme obesity and intellectual impairment.

By then, she was into a pattern of reckless behaviour that repeatedly landed her in jail and in court. She was charged with arson after an incident while making popcorn at a group home. She was finally given a diagnosis of bipolar disorder with psychotic symptoms when
she was 16, Ms. Hepburn says.

Although her daughter has had success in treatment, because of her record she has yet to find a spot in another group home. “I don’t know where people like my daughter should go,”
Ms. Hepburn says.

In Tavish’s case, he will be living with autism all his life, but his anxiety, OCD and self-harm have been brought under control with a low dose of Zoloft, an antidepressant. Without it, many of the sensory features his parents have built into their home to help him cope with his autism, including swings and a wet room where Tavish, now 7, can play with running water, might be useless. “There is no way he’d be where he is today because
it would constantly be something that we were battling as opposed to something we were treating,” Ms. Kliewer says.