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Tourette Legacy Files, Part 1: Terry Ferguson

In this new blog series, we honour the men and women who helped the Tourette Syndrome Foundation of Canada rise from its humble roots and explore the events that shaped its history.

Terry was there from the beginning.

According to an early issue of The Green Leaflet (lovingly published in a Toronto basement using a hand roller press and carbon paper in March 1979), Terry was “one of the earliest to be diagnosed as having Tourette’s Syndrome in Canada.”

Mr. Ferguson was very open about his TS, and had up-to-date knowledge about neurological disorders other than his own. A passionate volunteer for the TS cause, Terry sat on the TSFC Board of Directors as well as “serving on the executive of the Gravenhurst Kinsmen Club,” an Ontario community in which he owned and operated The Muskokan Motel.

Terry was a very kind man, his presence being “a terrific morale booster for many of our members.” He loved photography and electronics. “An avid correspondent,” Mr. Ferguson was always “willing to exchange letters with any member.”

daddy & us

But Terry’s story and his legacy do not end there. The Green Leaflet reads: “Terry is a family man and is very proud of [his wife] Judy who stood by and dotes on his children, son Kenny and daughter, Heather, one year.” When Terry passed away, his family, including Heather and Kenny, now grown up, decided to honour his memory along with Terry’s friends by participating in the Trek for Tourette held in Bracebridge, Ontario.

Each March, this large group treks five kilometres through the crisp Muskoka air to raise funds for the TS cause that Terry so strongly believed in. Some bear the curious writing “VE3 TKF.” If you ask them, they’ll tell you it’s a reference to Terry’s call sign as a ham radio operator, his beloved pastime.

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Trek For Tourettes Mar21 2010

Says his daughter Heather, now a proud parent herself:

Growing up with a father who had TS was ‘normal’ to me. I didn’t fully understand it at young age, however growing up I became aware of his physical tics and verbal slurs. When he became excited or anxious about a social gathering or event, his tics would increase. As I matured and understood TS more, I became proud of my dad. He plunged forward in life from a difficult childhood growing up with TS to falling in love, getting married, running his own business (with my Mom for 25 years) and raising my brother Ken and I. My dad was a father in a home full of unconditional love, support, humour and happiness.

We salute Terry Ferguson for his contributions to the TS movement and for being such an incredible role model for so many. May his spirit of volunteerism be an inspiration for other volunteers, current and future.

radio pic

Guest Blogger Brittany Fichter: My Medicine of Dance

This blog post originally appeared on BrittanyFichterWrites.com.

Brittany FichterI don’t watch Dancing with the Stars often, but when I heard that tonight was Disney night, I couldn’t resist. And I was not disappointed.

I grew up dancing. It was always one of the biggest parts of my life, but I didn’t realize how much it did to improve my Tourette Syndrome, OCD tendencies and anxiety until I graduated from high school and my tics began to get worse. I’ve given it quite a lot of thought, trying to put into words what my body and soul feel when I’m dancing, attempting to make sense of why dance so helps calm my mind and loosen my tics that cling so tightly to me.

This is what I’ve come up with.

How Dancing Improves My Tourette
If you’re not familiar with Tourette, having it makes you feel like you’ve got a million little bursts of energy all over your body. These bursts of energy make you feel like you need to constantly move, your tics (involuntary vocal sounds or physical movements), itching to escape. Suppression is possible, briefly, but what you’re left with is a body with a ton of energy that has nowhere else to go.

Unless you dance.

For years, my dance studio attended competitions. Dance competitions, if you’ve never attended one, are chock full of detail. Scores are about much more than simply remembering the dance. Here are a few of the places that judges look to add or take points:

  • Strongly pointed or flexed toes
  • Good posture
  • Every part of the body full of energy
  • Smiles (throughout the entire dance)
  • Perfectly matched costumes
  • Perfectly timed leaps and steps.

I won’t go into gory detail, but in short, every look, every angle, every muscle must be in place to get full points. The dancer’s countenance must be full of energy and enjoyment, or whatever expression is appropriate for the mood of the dance.

Now, this might seem like torture for someone like me, who has obsessive-compulsive tendencies, someone whose stress shoots through the roof when I can’t hit every mark on my checklist. But in reality, it’s heaven. All those little bursts of energy that randomly pulse through my body, constantly distracting me and distracting others, suddenly have a purpose. All the energy that’s demanded for a perfect score in dance is already inside of me, only when I dance, it’s being used for good instead of evil.

Not only is my body relieved, but my mind as well. The problems that distract my mind in general can’t be attended to. The anxiety that almost constantly floats through my mind must be pushed to the side if I’m going to focus all my attention on dancing. Normally, the anxiety refuses to leave, but thanks to the perfectionism brought about by my OCD tendencies, my disorders work against each other. In order perform well, I can harness my OCD and use it for something I love.

Actually, I experienced something I’ve heard of in at least one other individual with tics, and I’m sure I’m not the only one. When I was little, dance steps became my tics. While this might sound aggravating at first, it’s really quite enjoyable. Most tics are intruders, movements that take control of your body, shaking you, making you squeak (or yell, bark, or say odd things), using you as a puppet.

But when I dance, I have control of my tics. My tics are constant, but their presence means constant practice. And practice makes perfect. A little girl dancing around a store is much more socially acceptable than a girl running around the store shrugging her shoulders and squeaking. And while I’m the last one to say tics are something to be embarassed of, dancing is a lot easier to explain than most other tics.

In a way, I can say my tics are partially responsible for making me a confident dancer. My OCD tendencies made me a student of the art. I thought about it constantly, ran the routines through my head before going to sleep, chewed over my mistakes after practices, and hyperfocused on it throughout the actual practices. Dancing helped me feel whole, complete. Instead of being split by the parts of my being trying to run in all different directions like they usually are, I could be simply in one place at one time.

Life-with-Tourettes-Dance-300x226

[Image from BrittanyFichterWrites.com]

Dance is a Fantastic Form of Exercise
I’ve previously discussed the benefits of exercise in reducing anxiety. Beyond even basic exercise, however, dance has a leg up on the competition (Pun intended. Ba-dum-paaah.) In the article, “Stress and Stress Reduction,” by Indiana University, Bloomington, it states:

A person who is completely involved in an activity, whether it be chess, rock climbing, the arts, dance, or anything else, often experiences certain subjective feelings called the “flow state.” The flow state is a feeling of unified flowing from one moment to the next in which the person is in control of his/her actions and in which there is little distinction between self and environment, past, present, and future, stimulus or response. While in the flow state, the person usually does not think of him/herself as being separate from what he/she is doing.

An article on Livestrong.com titled “Exercises for Anxiety Relief” notes that “exercises that are continuous and rhythmic tend to be especially beneficial for anxiety relief.”

Different Kinds of Dance
Fast-paced dances like clogging, tap dancing, Irish step dancing, hip hop or jazz might not be your thing, and that’s okay. There are lots of different kinds of dance that can help you focus and kick some of that anxiety to the curb.

Group classes given at gyms or community centres are often lots of fun. My mother loves a class at her gym called Barre Booty, a mix between ballet moves and other moves to strengthen and tone; I have a lot of fun, personally, with Zumba. Group classes are great because everyone’s focusing too much on her own workout to notice you. (If you still don’t feel comfortable, there are some great dance DVDs you can do at home, such as Dancing with the Stars. I have four of these DVDs, and they’re great workouts!)

There are all types of partner dances, such as in ballroom dancing (If you want more types of dance, here’s a great link to a list of ballroom dances.), which, if done with a special someone, can help lower stress even more through physical contact!

Whether you love to dance in a group or by yourself, dance can be a great way to work off anxiety, focus OCD tendencies, and give those ticcy bursts of energy somewhere to go.

Brittany Fichter is and Air Force wife, educator and writer. You can follow her on Twitter and subscribe to her blog on BrittanyFichterWrites.com. She is currently working on her memoir, “chronicling a year of life with Tourettes, OCD tendencies, anxiety, the Air Force, the grace of God, and all the shenanigans that come along the way.”

Guest Bloggers Austin and Tricia Dilworth: Science Fair Winner Covers TS

photo 3My name is Austin Dilworth and I am 9 years old. I was diagnosed with Tourette Syndrome in March 2012.

This year, I had an opportunity to participate in my school Science Fair. I chose to do my project on Tourette Syndrome. I received a gold honour at my elementary school and an invitation to attend the Divisional Science Fair on April 09, 2014. There, I received a silver honour for my study project!

I am very proud to say I have educated my friends, family, teachers and my community.

Austin and Tricia Dilworth

Says the TSFC Winnipeg Chapter: “Way to go Austin! Your table top display is so well done, I think our Chapter should borrow it for our next display opportunity.”

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Ask Dr. Ticcy: Do my tics mean that I have TS?

Ask_Dr_Ticcy_LogoDear Dr. Ticcy,

My younger brother saw a doctor about his tics because they were bothering him. He was diagnosed with TS. When I found out, I started reading about TS because I wanted to learn more about the condition. Then I started noticing that that my dad, my older brother and I all do or say things that fit the definition of a tic.

Is it possible that we (my dad, older brother, younger brother and I) all have TS? I’m wondering if everyone in my family has TS, but my brother’s tics are the worst so he is the only who saw a doctor and got diagnosed?

Thanks!

TS or Not?

Dear TS or Not,

Thank you for your great questions!

First and foremost, remember that the only way to know if you or anyone has TS is to see a clinician (that means a doctor who works in a hospital, clinic or some other healthcare setting where they provide care to patients).

Second, learning as much as you can about TS and tics, just like you are doing, is a positive step. Here is some additional information that might interest you.

According to the guide used by doctors for diagnosing conditions like TS (called the Diagnostic Statistical Manual of Mental Disorders or DSM), there is more than one kind of tic disorder. TS is the most severe type. Milder tic disorders include Persistent Motor Tic Disorder, Persistent Vocal Tic Disorder, and Provisional Tic Disorder.

The DSM-5 (the current fifth edition) states that to have Tourette Syndrome, a person must have:

  • Multiple motor and one or more vocal tics at some point (though not necessarily at the same time);
  • Tics over the course of a time period of more than one year (the tics can wax and wane during this time, the year plus time period begins after the first tic appears);
  • Tics that occur before age 18; and
  • Tics that aren’t caused by the psychological effects of a substance (e.g. Cocaine) or another medical condition (Huntington’s).

To have a different type of tic disorder, a person must meet different DSM-5 criteria.

To have Persistent Motor or Persistent Vocal Tic Disorder, you can’t meet the criteria listed above for TS. This means you can’t have TS and this condition, only one or the other. To have this particular tic disorder, you must have either single or multiple motor or vocal tics, not both types. Notice having TS means having both multiple motor and one or more vocal tics whereas having Persistent Motor or Persistent Vocal Tic Disorder means having only one type of tic. Like TS, tics may wax and wane in frequency but must persist for more than a year since the first tic appears. Additionally, and also like TS, the onset of tics must happen before age 18 and symptoms must not be caused by a substance or another medical condition.

To have this Provisional Tic Disorder, you must have tics (single or multiple motor and/or vocal) but these tics are present for less than one year after they first appear. Like TS and Persistent Motor or Vocal Tic Disorder, tic symptoms must happen before age 18 and can’t be caused by the psychological effects of a substance or by another medical condition. To be diagnosed with Provisional Tic Disorder, you can’t at any point meet the criteria for TS or Persistent Motor/Persistent Vocal Tic Disorder.

Please note that there are people with TS who do not take part in treatment (whether prescription drug or behavioural therapy, etc.). Others with TS do take medication and/or do behavioural or other types of therapy to help manage their symptoms. Many people with TS report that there associated conditions (e.g. OCD, ADHD, mood disorders) affect their daily living more than their tics. That said, tics can be disruptive to daily life for some people.

Remember that the diagnosis of a tic disorder whether it is TS or milder case, as well as treatment and symptom management, all must be done under the supervision of a professional clinician (e.g. neurologist or psychiatrist).

Don’t know where to start find the specialist near you? Ask your family doctor or primary care physician, or call the Tourette Syndrome Foundation of Canada at 1-800-361-3120.

The Story of Canada’s Only Great Dane Service Dog for Tourette

The following story comes to us from Jodi Laycock of Luseland, Saskatchewan.

Life Before Sabbath

As a child growing up in the 1970s I always had a tendency to display odd behaviours that would often get me in trouble, like pinching or poking other children and making strange sounds or wild, disruptive gestures.

“Stop that,” I was told.

“You’re causing a scene.”

“You need to learn to behave.”

“What’s wrong with you?”

I heard this day in and day out, and I would retreat deeper into myself, knowing that I had no control over my ‘traits.’

I began to avoid going out into public. Soon I got a reputation as a fun crusher, because I’d never accept invitations to go anywhere. With time, people simply stopped inviting me. So again, I spent more time alone, wondering why I couldn’t just act ‘normal.’ I was very aware of what I was doing. I knew it as my hand slammed into my nose over and over so hard it nearly broke: I simply couldn’t stop.

Growing up I was lucky enough to travel the world with my family. As a teen I lived in Switzerland, where I began to seek out medical help. Not just seek it out, but force the doctors to run tests to determine what was going on once and for all. I seriously believed that I might just be ‘crazy.’ I mean, sure I did all these odd things, but not all the time. If nothing was wrong with me medically, then I prayed that they would at least send me to a ‘shrink.’ Something. Anything.

The diagnosis of Tourette Syndrome came back. “Yeah right,” I thought. I don’t shout profanities like I see on TV. So on I went to another neurologist. And another. And another. All of them came back with the same diagnosis. They explained to me that Tourette does not always involve coprolalia. They also explained that there was no cure, and that it was something that I must learn to live with. The tics would change, coming and going, appearing and disappearing throughout my life. I would never be free of this condition that steps in and takes over my movements before I can blink or do anything to stop it. How could I live a full life? “That’s not living,” I thought.

When I was 25, I met a man who understood my condition clearly, and we got married. He helped me make light of my TS and encouraged me to recognize that everyone is different, not just me. Being imperfectly perfect is okay, too. We had a son. I tried to give my son a full life. He was active in every sport that we could involve him in. This forced me to be out in the public eye once again, still not a comfortable place for me.

The years passed and I learned how to hide or cover many of my tics. People have commented, “Oh, I never knew you had Tourette’s.” Hiding the twitches becomes an art form as one gets older. I was an artist.

The Danes

My son grew into a wonderful adult, moved out on his own, and I was left at home with a husband whose work took him away from me much of the time. I had less reason to get out and be social, so I didn’t. I have a wonderfully huge landscaped property, and I could walk my dogs—three Great Danes—in peace without any eyes on me. Our town even delivers groceries. Leaving the house became a rarity. My dogs certainly never laughed at my tics or asked me to stop doing them. They never once asked what was ‘wrong with me.’ I began to hide in this insulated world. But I knew it was wrong. No 44-year-old should spend their days avoiding other people, and depression set in.

OLYMPUS DIGITAL CAMERAMy Great Danes are very intuitive. They can read my emotions easily and react accordingly. Not only are they giants, they’re ‘leaners’ by nature. This means that they like to lean their body into and against you an awful lot.

I became very involved in the online Great Dane community. It was a way for me to be social without anyone judging me because of my disorder. I’ve made many wonderful online friends from around the world. In doing so I came upon two wonderful women who were breeding their dogs.

The Law

I’ve seen service dogs, and in the USA dogs are used for therapy and emotional support. I began looking into the laws in my area. In Canada, therapy dogs and emotional support dogs are not given public access, only service dogs, who must be Assistance Dog International (ADI) trained and certified. To be a service dog, a dog must be trained to accomplish a minimum of two service tasks. Not only must the dog be ADI certified, he or she also must come from ADI breeding facilities, and ADI breeding facilities only breed retriever/lab crosses, sadly. A lab/retriever would not be suitable for my needs, as they wouldn’t have the necessary size or weight, which I’ll explain.

Luckily, I live in Saskatchewan. It’s the last remaining province with ‘archaic’ legislation. Residents of Saskatchewan can have dogs of other breeds providing they meet training qualifications set out by ADI.

I was fortunate enough to receive the most beautiful Great Dane pup, Sabbath. He was born on Boxing Day 2013 in Ohio thanks to these two breeders who wanted me to be able to use one of their Great Danes as a service animal. They believed his size and temperament would be a perfect match for me, and trusted me with his care based on my experience with Great Danes.

I was thrilled. They sent me daily pictures, along with detailed information gathered during routine puppy vet checks. On April 1st, 2014, Sabbath flew to us from Ohio and was welcomed into our family with loving arms.

I take this responsibility with great respect and seriousness. His training will continue and he will be able to perform his two tasks as required by law. His tasks will specifically fall under the designation of a medical alert dog. He will alert me to slight physical changes in myself that I may not recognize in time to step away from a situation that would be harmful to myself or others. As his second task he will have the ability to pin me against a wall by leaning (a natural Great Dane trait), to help keep me from harm.

Life With Sabbath

Sabbath is now 5 months old and he’s amazing. He’s been by my side since he arrived, becoming used to me and familiar with my symptoms. He’s been in large stores like Costco and Wal-Mart, and accompanied me to hospital appointments and testing, all the while behaving like a perfect gentleman. He’s given me a chance to talk to people who stop us to ask what type of medical alert he’s being trained for, a great opportunity to explain to people what Tourette is and what it isn’t.

Sabbath-cardSabbath is helping me leave my house with more confidence so that I no longer feel house bound.

I am happy. Truly, deeply happy. Happy that I can see an opportunity to break free from these chains of retreat and get out. Be a part of my community. Have a life. I believe that with help from my new friend Sabbath this will be possible.

I’d like to thank my community of Luseland, Saskatchewan and everyone else for welcoming Sabbath with such love and hope, and to send a special thank you to Donna Bond, Tonya Bohannon and Pam Baxter.

Guest Blogger Ethan Macdonald: New Study Finds Parallel Between Humans and Mice

labMice_1632902cThe recent study ”Histidine Decarboxylase Deficiency Causes Tourette Syndrome: Parallel Findings in Humans and Mice” (Barlan et al., 2014) examined a rare mutation in humans with TS. So rare in fact, that it has only been identified in one gene family. This particular mutation works well for creating new animal models. Unfortunately, since the mutation is rare, the findings from this study may not apply to much of the TS population (they especially might not apply to those whose symptoms decrease with age). That said, some articles (Karagiannidis et al., 2013) suggest that other histamine-related mutations are more prevalent in the TS population. This is hopeful: perhaps there could be some therapeutic overlap.

Genome-wide association studies (studies that take a look at many common genetic variants in different individuals to see if any variant is associated with a trait) have failed to identify common mutations for TS. Perhaps this is due to small sample sizes. In this study, no causal mechanism was found between genetics and human behavior. I would consider the title of the paper to be a bit overstated given this.

The researchers hypothesized that the family with the mutation had lower histamine levels, which lead to higher dopamine levels, which lead to more tics and that this could be replicated in a mouse.

Here are some key points from the study:

  • Indeed, the researchers found that mutated mice had an underlying susceptibility for tic-like behaviors;
  • Similar to humans with the mutation, the tic-like behaviors in mice didn’t change with age;
  • By injecting Haloperidol (a “dopamine blocker”), the researchers were able to reduce or eliminate the tic-like behaviors in mice;
  • This happens in humans, too;
  • By injecting histamine, the researchers were able to eliminate tic-like behaviours;
  • Dopamine levels dropped in the striatum after the injection of HA;
  • Using neuroimaging (PET), they found some evidence in humans that there is a direct relationship between the mutation and dopaminergic regulation in the basal ganglia; and
  • This is a very interesting mechanism, and it definitely supports their hypothesis, although we still don’t know exactly how it works or what the effects are outside of the basal ganglia.

The authors of this paper suggest that the findings are broadly generalizable to the TS population (meaning that findings apply widely to other people with TS). I would caution again that this is a very specific mutation found in only one family, although perhaps the results will apply to other people with similar mutations. Further research should be done to replicate these findings and determine for whom and to what extent histamine modulation affects tics in humans.

More broadly, this constitutes a new animal model of TS with testable hypotheses. It may or may not lead to new medications or neurological interventions for people with TS. I personally believe that this vein of research probably won’t help with the social or cognitive factors involved with TS, and future findings from this stream of research could complete part of the puzzle but not all of it.

If you would like more information about this article please email tsfc@tourette.ca.

Ethan Macdonald is a researcher of Tourette Syndome and cognitive science at McGill University who had challenging TS symptoms during his adolescence.

Guest Blogger Bella Thomson: Making My Film About TS

bellaWhat Makes Us Tic is a feature-length documentary that aims to increase awareness and understanding of Tourette Syndrome. Through a variety of media including personal interviews, a short film, and an animated robot named R.T.S.T., What Makes Us Tic will illustrate what it’s like to live with Tourette Syndrome, and give audiences a good understanding of the disorder to help stamp out common stigmas and misconceptions.

The filmmaker, Bella Thomson (pictured in this screenshot from an earlier draft of the film), is a BC high-school student who has lived with Tourette Syndrome since she was nine years old. She feels very passionate about raising awareness for the disorder because she’s experienced first-hand the ignorance and lack of understanding that so many people have towards TS, so she’s combined this with her love of film to create a documentary.

…Okay, enough with the formalities. I’m sure you’re wondering why any teenager in their right mind would attempt to produce a feature-length documentary, and have it finished before they graduate. Well, my best answer to this question (other than that I am just very ambitious) is that I am very driven in my passion to raise awareness for Tourette Syndrome. To me, if society can come to understand afflictions like cancer or multiple sclerosis, then they can come to understand Tourette Syndrome, and know that it’s morally wrong to mock it, like it is for a lot of disorders or afflictions nowadays. I want people with TS to be able to feel comfortable being themselves, and not afraid of who they are. In short, I want to do my part to make a difference for TS, and I think because I’m still a student living with the disorder, that impact will be so much greater! Already, producing this documentary has been such a great experiance. It’s taught me so much. This film is actually an extension from a film I did for a school project in grade nine, which was half and hour long. The film turned out really well, but I wanted to make a big impact and there were quite a few technical issues that were inhibiting that success. So I decided in grade eleven to create an updated version of the film!

So far I’ve had a lot of success with this film. I partook in a Changemakers pitch event in November for the film, and won third place in the youth category. As well, I’ve raised a total of over seven hundred dollars on Indiegogo in fundraising for the film. There’s a lot that’s happened in regards to the film since September when I began, and there’s still lots to come!

Right now I’m organizing interviews for the film, and looking for submissions of art projects relating to TS to include in the film. My plans are to conduct interviews in Vancouver at the end of May, and in Edmonton and Calgary at the beginning of August. In regards to submissions, I’m also looking to include projects created by kids with TS about what it’s like living with the disorder. This could include artwork, poetry, music, dances, theatrical performances, vlogs—you name it! What I want to do is make this film as student-produced as possible and authentic to what real kids are going through. As well, I’m currently in production of a fictional short film and a one-act play which I’ll include in the documentary. I don’t want to let too much out of the bag at the moment, but these will give two very different perspectives on Tourette Syndrome, from two very different time periods!

So there’s a lot to be excited about, but most of all, I am very excited to have the opportunity to premiere the documentary at the National Conference on Tourette Syndrome Plus on October 23-25 in Vancouver, BC! I’m hoping to see all of you there.

If you’re interested in getting involved with my documentary, please feel free to email me at tic@bellamaria.ca.

You can also visit the film’s website.

Help Put an Award in the Hands of a Deserving Volunteer

TitleDid a volunteer help you last year? Did a school, teacher or doctor impress you? How about someone you know who fundraised or acted as a role model?

Canada’s TS community is full of amazing volunteers. Whether you’ve been impressed by an organization, individual, family or fundraiser, recognize them by nominating them for an official TSFC award!

There are lots of awards to choose from:

Awards for Individuals

Richard Stein Memorial Award (Quality of Life Award)
For someone who made a really big difference in lives of people with TS.

Medical Award
For a doctor or clinician who did an amazing job while working with people with TS.

Maureen Cavanaugh Public Awareness Award
For someone who helped to raise awareness about TS in the last year.

Todd Axelson Role Model Award
For a person living with TS who is role model for others. There are three categories for this award: Junior (age 6-13), Intermediate (age 14-21), Senior (22+), and one award can be given in each category.

Exceptional Member Award
For a member who made an amazing contribution to the TS community or has been volunteering for many years.

Community Service Award
For someone who made a big difference in their community last year.

Awards for Fundraising

Family Fundraising Award
For a family who teaches their kids about the importance of fundraising for the TS cause.

Sybil Berenstein Fundraising Award
For an amazing fundraiser based on their efforts in the past year (how much they raised doesn’t matter).

Awards for Schools & Educators

Exceptional School Award
For a school that is very committed to accommodating students with TS/TS+.

Educator Award
For someone involved in education who did an amazing job while working with kids who have TS.

Awards for Organizations, Families, & Institutions

Media Award
For a member of the media who did a great job covering TS-related topics or gave lots of support to the TSFC.

Centre of Excellence Award
For a clinic that gave a unique or all-inclusive service to people with TS in the past year.

Research Award
For a person or group that made a scientific contribution related to TS.

Family Award
For a family who teach their kids the importance of volunteering and encouraged their kids to be active volunteers.

Corporate Award
For a business that really supported the TSFC last year (through fundraising or other major support).

How to Nominate Someone

You can make your nomination:

1. Online: http://www.tourette.ca/getinvolved-volunteernominationform.php
2. By Mailing in this Form: http://cms.tng-secure.com/file_download.php?fFile_id=26079

Before you send your nomination, please make sure that the nominee:

  • lives in Canada or provide services to Canadians;
  • is a member of the TSFC, if possible;
  • made their contribution to the community last year;
  • didn’t get paid for their contribution; and
  • made a difference to the TS cause nationally.

Nominations are due on Saturday, August 16th.

Supporting Students with TS+, Part 4: Guest Blogger Dr. Norm Forman

Teacher and Student at BlackboardThis is the final part of our blog series featuring the creator of the TSFC’s e-learning program Advocacy to the Rescue, Dr. Norm Forman. Read Part 1 herePart 2 here and Part 3 here.

Advocacy to the Rescue: Why We Need Rescuing

The parent training program in advocacy that I developed for TSFC is unique in Canada. Based on my book Exceptional Children — Ordinary Schools, it’s designed to “level the playing field” between the school and parents who have  children with special needs, particularly TS. It is accessed via a TS web-based distance learning platform in individual units on topics which include: IEPs, IPRCs, Legal Rights, Test and Assessments and General Principals of Parent Advocacy in the School.

The name of the program highlights rescuing. I receive calls from parents all the time describing their feelings of being “out to sea” and, in effect, asking for help in being rescued. Parents at school meetings often face difficulties when seeking changes to their child’s programs or services. School parents require resources and opportunities to network with one another to share their experiences and tips. They also need the opportunity to share their experiences in dealing with schools.

With this in mind I have helped develop a website which seeks to remediate the problems that parents encounter. The site, nse.zerofusion.com, is designed to offer a hands-on approach to problem-solving including such features as an IEP template so that parents can familiarize themselves before any meeting. It’s urgent for parents to prepare themselves in dealing with the schools by learning as much as possible about the system, how it works and how to manage within it. This is what school parent advocacy is all about. The TS training program presents the perfect opportunity to learn these important skills. It is done online and I am available to assist participants in the process.

ATTR_logo_smallPlease contact TSFC for more information on Advocacy to the Rescue.

Supporting Students with TS+, Part 3: Frequently Asked Questions by Parents

Teacher and Student at Blackboard

How is Tourette Syndrome “identified” or “categorized”?
Tourette Syndrome is a neurological condition (sometimes referred to as a neuropsychiatric condition). It is a physical—not a behavioural or a mental health—condition. Tourette Syndrome is associated with other behavioural and mental health conditions because of the high likelihood of having additional conditions of these types. There are more people with TS and one or more additional conditions that could be categorized as behavioural, psychological, neurological or mental health than there are people with only TS. If a person has more than one condition, for example, TS and ADHD or TS and OCD, they can be categorized as having multiple exceptionalities.

Can my child ever be punished for symptoms of their TS or TS+?
You shouldn’t be punished at school for symptoms of your medical condition. For example, it would be ridiculous to think that someone might be punished for having a seizure. That said, sometimes it is hard to tell the difference between a symptom and an intentional action. You can take steps to help your son or daughter’s school staff become more aware of this potential source of confusion by letting them know about your son or daughter’s condition(s) via a letter from their physician. Ask the doctor to describe their symptoms in the letter if you think that would be helpful. You can request an in-service presentation, which will be delivered by a trained TSFC volunteer. You can also encourage your son or daughter to take responsibility for the outcome of their tics or other symptoms. They do not have to apologize for having a tic, however, they could still share in the responsibility for dealing with what happened because of that tic. This may mean apologizing for hurt feelings, for example. If you feel your son or daughter was wrongfully punished for symptoms of their medical conditions or condition, you can speak to:

  • The teacher;
  • The school principal;
  • A school board representative or ombudsperson; or
  • The TSFC national office.

What happens if I don’t want everyone at school to know about my child’s TS?
If you don’t want to disclose your child’s TS, then you don’t have to. However, disclosure does have advantages: it helps students better understand their classmate and it equips the school with complete information as they work to remove any roadblocks to learning. Disclosure can get the ball rolling on the process of building a special education plan/program. Ultimately, disclosure is a decision you make as a parent/guardian. If your child is old enough, you may wish to have them participate in the decision-making process as well.

Should I get them tutor?
That’s entirely up to you. You can always talk to your son or daughter’s teacher(s) for additional input. If you think this would be beneficial, you may wish to hire a tutor to assist with their school work. There is no rule of thumb.

My child’s medication (pharmaceuticals) has changed. Do I tell their school?
You can tell your child’s teacher or teachers, but you are not legally obligated to do so. This information is private, however, you can choose to share it if you feel it will be helpful. If you’re not sure, talk to the prescribing physician about it.

I’ve been asked to sign forms that give my doctor permission to talk to the school about my child’s conditions and treatment. Should I sign the forms?
You are not legally required to sign a form that gives your child’s education team access to information from their doctor. If you think it will be helpful, you may do so. Carefully read over the forms first before you sign and keep copies of the forms for your records.

I don’t like certain things in my child’s education plan/program. What do I do?
Discuss your concerns with the education team. As a parent or guardian, it’s normal to give input and participate in the education plan development process.  You are permitted to cross out items from the education plan before you sign off, however, this should be undertaken as a last resort and followed up with discussion with school staff.

My child has been suspended in the past, but they are doing better now and I don’t want that on their record. What can I do?
Talk to the principal of his or her school. In some provinces, you can request that the student record be purged. This means that past items are cleared out if they no longer have relevance to the student going forward.

What are alternatives to public school?
There are other options for schooling your child besides sending them to public school. The question is which one works best for you and your family. There are a number of considerations including cost and geography. There are also ways to go to public school without attending the way most students do. For example, a student might have a modified school day, do some home instruction, or obtain credits via co-op or summer school.

I am worried about cyber-bullying. What can I do about it?
Cyber-bullying is intentional, repeated harm inflicted on someone through electronic media such as the internet or cell phones. It includes using electronic devices to embarrass, exclude, harass, or harm another person. Common forms are text message bullying, email bullying, chat room bullying and bullying via instant messaging. Talk to your child to make sure they know that if they tell you about cyber-bullying they won’t lose their internet or cell phone privileges. Make it a rule that your child can only use technology in a respectful way. Report any threats of harm or violence to the police. Make sure that your child knows that they are a special, good person, regardless of what a bully says. Be a positive role model. There are many great anti-bullying websites out there including www.bullying.org.

Stay tuned for the final part of this blog series, featuring a guest blogger, which will be published later this week. Read Part 1 here and Part 2 here.