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Mandeep in Edmonton

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  • Mandeep in Edmonton

    EDMONTON - When Kay Wilen escorted 10 teenagers from Vancouver to Montreal last year, she knew she needed to warn the flight crew and the passengers about the dramatic sounds and behaviours they might hear or see.

    So after the usual rundown about seatbelts and safety precautions, a flight attendant read an information bulletin over the loudspeaker, letting everyone know that a group of passengers had Tourette syndrome and were travelling to a national conference to explore the complex neurological disorder.

    Among them was Mandeep Sanghera, now 17. This year, he is driving to Edmonton for the 2006 conference, which runs Thursday to Saturday.

    Sanghera's conversation is peppered with the most foul swear words, but also frequent, polite apologies for the offensive language and off-putting sounds he cannot control.

    "It's been quite an adventure," Sanghera said about his life with Tourette's during a recent telephone conversation from his west coast home. "I've got a lot of stories to tell. I've met all kinds of people on the SkyTrain and made lots of friends."

    Sanghera can't help but meet people, since his mouth spits out expletives that are racist, misogynist and profane. When he flips his middle finger at smiling waitresses, he needs to explain to them that he has Tourette's. It's a disorder characterized by vocal and physical tics that range in severity from throat clearing to constant blinking, barking, pulling their pant pockets or tapping.

    Between 10 to 15 per cent of people with Tourette's have a condition called coprolalia, compelling them to swear. Some people's bodies twitch violently, sending elbows or feet into others.

    About 60 to 75 per cent of people with Tourette's also have obsessive-compulsive disorder, attention deficit hyperactivity disorder or anxiety problems.

    Sanghera said some people move away from him when he takes the bus. Recently, he went home with a bloody lip after he swore at a group of drunk young men when he was out skateboarding and eating chips with his buddies.

    But he said the airplane ride to last year's conference ended up being an amazing experience for others on the plane. Passengers asked him questions and settled down after they understood he couldn't help his verbalizations.

    Almost everyone in Sanghera's school knows him now and his confidence has grown, but Grade 10 was a hard time for him. He went off his medication, tried to cut himself and ended up in a hospital psychiatric ward for three months.

    That same year, he joined a teen support group led by Wilen.

    Now, he's confident enough to go for his driver's licence. He went through driver's training and made a request for an instructor who wouldn't mind being struck by Sanghera's right hand. Even though some friends worry he'll twitch and his hands will come off the steering wheel, Sanghera said he is able to focus while driving.

    Wilen said she's already prepared Sanghera for the inevitable police pullover. He carries a card explaining his Tourette's and knows never to reach for the glove compartment.

    "He knows he has to be very careful and watch himself," Wilen said. "Mandeep has overcome a huge disability and uses it to his advantage to educate people about his Tourette's."

    That's what he did on the airplane to last year's conference and what another group of teenagers will do this year on their flight to Edmonton, thanks to a grant Wilen secured for their airfare.

    Sandra Green, president of the Edmonton chapter of the Tourette Syndrome Foundation of Canada, said between 200 to 300 people will be at the conference, including teachers, doctors and people with the disorder.

    Teachers will be taught techniques for the classroom, such as letting kids with Tourette's go for longer bathroom breaks to let their tics out in private. School marks can suffer if children use up energy trying to suppress their seemingly odd habits.

    Uninformed teachers can also assume the behaviours and sounds are intentionally disruptive.

    The conference also gives teens with Tourette's a chance to see others like themselves. "They are not alone in the city," Green said. "It provides them with an ability to talk to someone who faces similar challenges they do."


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  • #2
    Re: Mandeep in Edmonton

    I have had the Honor and Pleasure to attend the Summer Camp at Sasmat Lake in Port Moody with Mandeep 2 years in a row. The first year We went we only took the 3 boys who all have TS+, we did not know about Mandeep at that time and we were all standing around in the common hall and in walks this exuberent, happy tall young man and the first words out of his mouth at the top of his lungs I can not repeat in here. My kids faces just about hit the floor, even though we had discussed the fact that there was going to be a variety of people there with a wide range of Ticks this caught them completly off gaurd. However as it says in the posting Mandeep is an Amazing young man, and it did not take long for all the kids at camp to fall in love with him. When he was playing whith them you would hear him swear then imeadetly apolagise. We whent again this year and took the boys step-sisters with us. We talked to them about Mandeep before we whent so that they would be prepared for the language and gestgures as best they could be. They had more fun at Sasmat Lake at TS Camp than they did in the week we were camping before we got there. Mandeep is a Fabuluss young man, happy, outgoing, a great role model for all our young ppl. Mandeep is all my 5 kids could talk about when we got home (in a good way) they love him and so do we, they have mentioned several times that they miss him. I think that anyone who is lucky enough to spend any quality time with this extrodinary young man is very lucky, can't wait to see him next year.
    We love you Mandeep


    • #3
      Re: Mandeep in Edmonton

      I am sure all kids who meet Mandeep are impacted positively. Mandeep was attracting all the little kids during the TSFC conference last week because he is so quick to get down on their level and make eye contact and listen to what they have to say. Mandeep is definitely a role model and for that reason was awarded the national TSFC role model award this year.


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