battling autism

         If you live in Ontario, as I do, you know there's been much discussion about the government's funding for families dealing with autism. In writing my book "Pushing The Boundaries", I was privileged to meet with two individuals  who had the guts to take on this unbearable condition, former Chair of NBC TV Bob Wright, and Anne Larcade. Let's meet Anne....
         When I joined her for lunch, this dynamic lady wasted no time sharing her overall approach to life: finding solutions to challenges based on four filters:
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         a) How you can improve things for your situation?
         b) How can you improve them for the long term and for others' benefit?
         c) How can you try to change the world?
         d) How can you maintain your own good health, mental outlook and attitude?"
         Anne is President of Sequel Hotels and Resorts, a lodging consulting company. She cut her teeth in the hospitality industry working at a small summer resort, a family business built on passion and hard work. By day, she did the accounting and marketing; by evening she cooked with the chefs. It was a great training ground. "Oh yes," she adds, "on weekends, I ran the front desk."
         She tells me her career has been based on strategy, execution, and measurement. "To be good at that, you need to have a genuine love of people and respect for all team members. And..." she adds, throwing her head back in laughter, "you also need to love a full bodied red wine!"
         One of the personal passions in Anne's life is workplace diversity. Not surprisingly, she offers distinct perspectives to change and enhance women’s lives everywhere.
         "You know, there are very few women in the 'c' suite in the hotel industry," she says. "So I'm definitely pushing the boundaries by working with men on an equal basis. And I'm pushing that even more, all the time. Being different. Being innovative. That, or you're just one of the pack... which is OK, by the way... it's just not for me. When you are one who pushes the boundaries – when the opportunity arises – you must grab it, not just talk about it."
         Anne explains that because men and women think differently and have strengths and weaknesses, they can learn from each other. "Men are direct. Woman like to talk through problems. Men take more risks: women are reticent. There is such great learning we can access from each other."
 
         OK, on to the key area of Anne's life that has nothing to do with business. It's dealing with her very special son Alexandre. Some of her most challenging moments have been times standing in a courtroom, fighting for the severely disabled child she loves dearly.
         "It stared with me being a single mom with a big career raising two boys," she tells me. "But then, the unimaginable happened: my 8 year old Alexandre got abducted at school, taken to a boiler room by a pedophile and then handcuffed to a boiler pipe where he was sexually abused. Alex, who is autistic, regressed as a result. Post traumatic stress. I was told my son would never talk or read, but I said, 'No! We'll find a way.' And we did. Now he reads and talks very well. At the same time, Alex suffers from brain damage and a degenerative neurological condition that is causing him to slowly regress.
         "In terms of dealing with an autistic child, I've had to push the boundaries to allow my son to live and to prosper," she continues.
         After years of caring on her own for Alex (whose neurological disease makes him prone to violent rages), she had finally got him a coveted spot in a group home for special needs children, only to be informed that she would lose it unless she abandoned her 10-year-old son to the permanent care of the Children's Aid Society (CAS).
         "By 1999, Alex needed predictability and a structure in order to thrive. But one day, out of the blue, I get a call from a worker who says, 'We're going to have to put your son under CAS care and you're going to have to abandon him or give us custody to allow him to stay in this great place we've found for him that's going well (hundreds of miles away from where Anne was living, by the way). Take it or leave it.'
         "Peter, I was shocked!" she says.
         First Anne cried. Then she got angry.
         And then she said, "No, this is not right! After all, parents were abandoning careers and mortgaging their houses to look after children whose round-the-clock care is exhausting and extraordinarily expensive. With nowhere else to turn, many families were reluctantly surrendering their kids to the CAS to obtain care for them."
         In the end, Anne could not bear to go through with it. She signed an affidavit opposing the wardship of her son. "Ms. Larcade," the judge told her, "you're a brave woman, and I wish you luck."
         Between 2000-2008, Anne Larcade led a $500-million class action suit against the government. It included families of severely disabled children like Alexandre who had been denied funding and services that their lawyers said they were entitled to. It went all the way to the Supreme Court.
         "For years, the government was arbitrary in paying expenses for families with disabled children," Anne told me. "Then, without warning, they abruptly stopped underwriting these agreements, and families without the financial and emotional reserves to care for difficult children landed at the doorsteps of the CAS."
         Anne has become a well know advocate and speaker and has appeared on national television and in numerous magazines and newspapers around the world. She's also been named her generation's "Erin Brockovitch". And she's founded a charity, Special Needs Dreamworks: The Alexandre Foundation (specialneedsdreamworks.com).
         In the end, changes in policies and procedures occurred as a direct result of her strenuous work.
         "I consider this a huge win," Anne says. "Families no longer go through the trauma I experienced. Thousands of parents had lost custody or given up custody of their children and it became a class action suit in order to have placements and get therapy. And we won because regional disparity gaps were closed."
         Looking back at this incredible time, she explains there are external influences in our lives that sometimes can be difficult. "I'm struck by the fact that I never felt I had limitations," she says. "You ask about coloring between the lines... well, I don't even see the lines. There are no lines. If you don't like your life, you change it. We have the potential in each of us to endure, to overcome, to change."
         Interestingly, this intelligent lady told me, "The older I get, the less I know. If I had to do it all over again, I would do exactly the same thing. Live it, love it, learn from it, teach it. I feel blessed about my experiences and hope to do it in good health for many years to come."
         Talk about pushing boundaries: Anne Larcade just blows 'em out of the way!

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