Category Archives: TS Awareness

Children/Youth TS Awareness

Setting Myths About TS “On Fire”: an Interview with Author Dianne Linden and Her Inspiration, Granddaughter Erika


Dianne_ErikaTSFC member Dianne Linden is the author of a new YA-adult crossover novel, On Fire. The character Matti Iverly, one of the narrators in the book, is based largely on the life experiences of Erika, a young person with TS and Dianne’s granddaughter.

[PHOTO: author Dianne Linden with Erika]

GG Award Winning author Glen Huser has said of On Fire: “Linden brings many combustibles to this story ablaze with creativity: magic realism… mountain country mythology… survival stories… even some kindling from Dante. But what burns brightest is the voice of Matti, a teenager with Tourette Syndrome—true, and funny and heart-breaking—as she describes what happens when a young man with amnesia wanders out of a forest fire and into her life.”

The TSFC got in touch with Dianne and Erika to learn more about this new book and its impact on the writer and her inspiring family member.

Q: Dianne & Erika, could you each say in your own words what you think On Fire is about?

A: Dianne – On the surface On Fire is the story of Matti Iverly, a fourteen-year-old girl with Tourette Syndrome whose life is changed when a young man with amnesia wanders out of a forest fire area and collapses at her feet. It’s also the story of that young man’s struggle to reconnect with his life and reconstruct his identity. And about the power of community.

At a deeper level, it’s an allegory of the labyrinthine trials our kids often go through trying to “fit in”, and the courage and community support that allow some of them to make it through.

A: Erika – It’s about a girl like me who has Tourette Syndrome. She makes a promise to help this guy who needs her help and she keeps her promise, although it takes everything she has.

Q: Whose idea was it to have a character with TS in the novel?

A: Dianne – It’s hard to say where ideas come from. This much is true: I tried for many years to write about my son’s struggle with mental illness as a teenager. I could never do it, until Matti unaccountably drifted into the story. She came in complete, and very much influenced by Erika. Although she may not realize how important she’s been in writing this book, Erika has been my muse. Without Erika/Matti, I doubt if I could have completed it.

A: Erika – It was my grandmother’s idea. I only found out she was doing it when she began to talk about it. She asked me if it was okay.

Q: Dianne, what are some of the ways that the character Matti is like Erika? How do these characters differ?

A: Dianne – Matti is like Erika in her forthrightness and determination. You don’t ask her what she thinks unless you want to know. (Sometimes she tells you when you don’t want to know.) And Matti manifests Tourette Syndrome in the same way as Erika, primarily through vocal tics. They both need order and structure and have difficulty when their routines are disrupted. They both are fiercely determined when they want to do something.

Neither Matti nor Erika worry a lot about being “in style.” In Matti’s case, it may be because she’s never been exposed to ideas about fashion. But Erika is definitely aware of the messages girls get about how they should look and dress, and she’s determined to do her own thing.

Erika is a great animal lover, especially horses. Matti doesn’t have that same connection.

Q: Erika, how would you compare yourself to Matti?

A: Erika – We both have the same kind of tics. We’re both determined. And I’ve been picked on, like Matti, although I never ran anybody up a tree because of it. I mostly yell as a way of standing up for myself.

I’m lucky enough to have two parents who support me though, where Matti’s mother is dead. And her relationship with her father is kind of distant or professional. Also I’m a city girl. I’ve never lived in the mountains.

Q: Erika, what does it feel like as someone with TS to read (or be excited to read) a book where a character has TS?

A: Erika – I was curious to see how TS would be depicted in On Fire. It was more true to life than I expected, so it feels good—like being seen for who you really are.

I think it’s important that we have people like Matti to read about in fiction books so we see they’re human. We are. It’s important to get our perspective.

Q: Dianne, was it a challenge to write about someone with TS? How did it compare to writing another character?

A: Dianne – The only difference in creating Matti as a character with Tourette, as opposed to another character, was in how to represent her tics. My editor wanted me to describe them. How do I do that as a non-Tourette person? A hiccup going backwards is one of the descriptors I came up with.

I didn’t want to over-do the tics, though. That would make Matti a caricature instead of a person. I wanted readers to get a picture of what her Tourette was like, and understand some of the challenges she faced because of it, but also to identify with her: to see Matti as more than her T.S.

On-Fire-WebQ: Erika, what is your favourite part of the novel?

A: Erika – I loved it when Mrs. Stoa asks Matti to get her some lemonade and Matti takes out her credit card, starts cleaning her fingernails and says, “I’m tied up right now. Maybe later.” It’s an expression I think I’ve used before. I never saw how funny it is to say that when you’re obviously not busy at all.

Another time, Matti corrects a girl who calls her Matilda because that’s isn’t her name. I like how she speaks her mind.

Q: Dianne, what is your favourite part?

A: Dianne – I love a lot about this novel, so it’s hard to choose. I like Dan’s second narrative when he gradually begins to return to reality. I like his relationship with Howard. But if I had to pick one thing, it’s the section toward the end of the book called, Out of the Phone Booth. Matti says on the first page or so of the book, “At school they called me Tourette’s Girl, like I came out of a phone booth, wearing a costume and made funny noises for their entertainment.”

In the section I’m talking about, she actually does dress up with a black toque and sunglasses and a purple bomber jacket to shield herself from the chaos that’s going on around her as her village is being rebuilt after the fire. She steps out of her house, where she’s been in seclusion, but she doesn’t do it to be entertaining. She does it because she has come to see herself as someone who can make things happen. She believes she knows how to solve a mystery that develops in the book and she goes for it. Yeah, Matti!

Q: Dianne: – Authors put some of their own life experience into the life experience of their characters. What experiences, if any, did the characters go through, that you used from your personal life?

A: Dianne – Although the setting for the book is completely fictitious, I did grow up in the mountains, where ghost towns held great fascination to me. I’ve mentioned how Matti is connected to my experience through Erika.  And how I’ve tried for years to write about my son’s adolescent experience with mental illness. When Matti visits the young man she’s decided to call Dan in the Metal Springs Hospital, (Mental Springs, some people call it), she’s living my experience totally. It’s just that I experienced it as a mother visiting my son in a lock up ward of Alberta Hospital outside Edmonton, and Matti does it as a young girl trying to keep a promise she made from her heart.

Q: Dianne, What do you hope your readers will take away from reading On Fire?

A: Dianne – There’s so much pressure on adults as well as kids today to be like everyone else. I hope readers will get the message that diversity is good, and that embracing uniqueness is essential if we are to survive as a society. And I hope they’ll see that as much as anything that happens to Dan in the hospital, it’s the community Matti brings together for him that really helps him heal, and holds promise for others. And she does that as a person who’s had struggles of her own, but has never given up.

Q: Dianne, for those reading this who are aspiring writers, what is your advice about how to make it?

A: Dianne – The best way to improve as a writer is to write. Take advantage of workshops that are available to you, or writing groups, as long as they’re constructive. Be willing to revise and revise. And don’t forget to read. Pick books that are not necessarily mainstream. Experiment with styles. And with the changes in the publishing world, investigate all the options that are available: self-publication, publishing on-line, etc. I assisted a poet at a school workshop where the kids wrote their poems in chalk on the sidewalk outside school. That’s publishing, too.

Stay tuned to the TSFC Blog: a book review of Linden’s On Fire is coming soon!

Guest Bloggers Trek for Tourette TS Awareness Volunteerism

Guest Blogger Lisa Kaplaniak: A Successful Weekend of TS Awareness


PenCentre2013Hamilton Halton Niagara Chapter spent the weekend at the Pen Centre promoting awareness and answering questions about our chapter, the Trek & the TSFC. The success of the weekend would not have been possible without the dedication of Stacey Ryan who took charge and manned the table all weekend with family & friends. We are so very thankful to have Stacey as part of our volunteer team out in St. Catharines!

On the left in the photo is Stacey Ryan, and on the right is her sister Kristen Reyes. Stacey is also one of our Trek for Tourette volunteers. She attended the Trek for the first time last year with her son, and she is now helping us organize this year.

Lisa Kaplaniak
TSFC Hamilton Halton Niagara Chapter President

Children/Youth Guest Bloggers TS Awareness TSFC Affiliates Volunteerism

Guest Blogger Shari L.: Winnipeg Students Learn About TS and How to Give Back


Shari is the mother of two children including Evan, an eight-year-old boy who has TS and loves to play hockey. Shari lives in Winnipeg, Manitoba and is excited to participate in the upcoming Trek for Tourette (this will be their family’s second trek since Evan was diagnosed with TS).

DSCN8705Behind every great teacher, are great students. In this case, I am talking about the Grade three and four students at Hastings Elementary School in Winnipeg, Manitoba.

This year, these students embarked on a special learning journey. They experienced firsthand what it is like to have a classmate with Tourette Syndrome. They saw and heard their classmate ticcing—sniffling, throat clearing, blinking and shoulder shrugging (he also has neck straining). This classmate is a special person in my life. He is my son.

With the support of the teachers and the school, my family had the opportunity to help educate the class about what TS is, and what it isn’t. During the first few weeks of class, the threes and fours read the book I Can’t Stop: A Story About Tourette Syndrome. Next, they received a presentation on TS by the Tourette Clinic at St. Boniface Hospital. Most recently, the class watched an HBO documentary movie called I Have Tourette’s But Tourette’s Doesn’t Have Me [Ed. note: the TSFC has also produced a classroom-friendly film called Tourette Is Powerful].

In February, as part of a math unit, the students were asked to bring a maximum of 10 items (including toys, figurines, hockey cards and dolls) from home to sell at a school garage sale. This activity was an opportunity for the students to review and handle money, to make signs for their store, label the prices, advertise and work on their customer service skills. We were surprised to learn that this activity would become about much more than math and social skills. It was a hands on lesson in giving back and supporting a classmate.

The money from the school garage sale was to be donated to a charity of the students choosing. On Wednesday, February 13, 2013 the students voted to donate the money to two charities. I am pleased to say that one of two charities was the Winnipeg Chapter of the Tourette Syndrome Foundation of Canada.

A special message to those students from a grateful and proud family:

“Way to go Grade three & four students at Hastings School!!!!! We are so impressed with your kindness and ability to care for people affected by Tourette Syndrome. You are great role models and we can learn a lot from you! Whether you realize it or not you are helping individuals who have Tourette Syndrome. You are truly amazing kids who have demonstrated the gift of human kindness and acceptance. Thank you. My wish is that every student with Tourette Syndrome can be surrounded by kids like the ones at Hastings School. Thank you Grade three & four students of Hastings School and Mr. V!”

Ask Dr. Ticcy Children/Youth TS Awareness

Ask Dr. Ticcy: Should I tell the parent of my child’s playmate about my child’s TS?


Dear Dr. Ticcy,

I have a question regarding play dates. When my son or daughter meets a new friend do I tell/warn the parent about my son or daughter’s TS?

Sincerely,
Parent of a Child with TS

Dear Parent of a Child with TS,

Whether or not to disclose your son or daughter’s TS to the parent of a potential playmate or friend can be a tough decision.

It is also a decision that you must make, no one else can make it for you.

To help you decide, you might consider the following…

You need to weigh the pros and cons of disclosing.

An obvious con is that the parent might say that they no longer want their child to meet or play with yours. To this I ask, would you really want your child around a parent who would do that? Is this a real con?

A pro is that knowledge usually leads to understanding. In other words, a parent won’t interpret what your son or daughter does as intentional if they are told in advance that it is a symptom of a medical condition. If you choose not to let them know, they may not be familiar with TS and may assume that things your son or daughter does are deliberate rather than involuntary.

Flip the situation around, would you want to be told by the other parent? Why or why not?

If your child is old enough, talk to them about it and see how they feel.

If your child has little to no symptoms then disclosing may not be as important to you. The reverse is also true.

If your child can self-advocate, allow them to decide when and if they disclose to friends and families of friends.

The choice is ultimately yours and your son or daughter’s. There is no right or wrong answer. Make the choice that is best for you and your family!

Best Wishes,
Dr. Ticcy

Dr. Ticcy is a pseudonym for the TSFC National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

@Random TS Awareness

@RANDOM at Educator Gala Dinner


Recently, Douglas Coll, one of our National Directors, was invited to be the keynote speaker at the annual gala dinner for the Infundo Ephakemeyo Scholarship Fund. Doug was asked to speak on the importance of “education” as a tool to understanding and chose to speak on and present the @RANDOM documentary film project.

This amazing opportunity was provided to us through Paul Antunes, a long-time supporter and donor to the TSFC and his wife Rochina Antunes, a Vice-Principal at St. Maximilian Kolbe Catholic High School in Aurora, Ontario.

The 125 attendees, comprising a range of high school teachers, principals and board administrators from the York Catholic School Board, support this unique and worthwhile educational charity and are clearly an important constituency for the Tourette Syndrome Foundation of Canada.

The 25 minute presentation included an overview of the genesis of the idea, the development of the key creative direction, the project objectives and key partners, and finished with a showing of @RANDOM. This was an excellent opportunity to share @RANDOM as an “educational and awareness” tool for the TSFC and continue to build on our brand as a progressive, proactive organization.

Each year the Infundo Ephakemeyo Scholarship Fund offers several scholarships/awards to youth of Zimbabwean heritage towards post secondary education. These awards are determined on a competitive basis and require the submission of an essay, statement of need, transcript/credit counseling summary, offer and acceptance of admission by an institution.

All students of Zimbabwean descent are encouraged to apply.

Pictured in photo: Left – Paul Antunes: Treasurer Infundo Ephakemeyo; Middle – Douglas Coll: National Director, TSFC; Right – Melton Moyo: Founder Infundo Ephakemeyo.

TS Awareness

Tourette TV: Seven People with TS on Popular Television Shows


Much of the TS community has heard about James Durbin, the handsome young rocker who electrified TV viewers across North America with his performances on American Idol and told millions about what it’s like to live with the disorder. It was an emotional victory for TS awareness, and a significant marker of how far we’ve come. Used to be that the only time you would see Tourette Syndrome on television was when it was being mocked or at least misrepresented. Nowadays, thanks to factors like greater awareness, changing attitudes and the emergence of so-called ‘reality’ television, real people with Tourette Syndrome are now being given airtime, bringing TS awareness to more and more people.

Do you know any of the interesting and talented individuals with TS who’ve graced the small screen lately? Read on and find out.

Antonio Palazzola

Antonio is a shrewd trader and a family man who is very open about his TS on the television show Barter Kings on which he stars.

Heather West

Not many people can hold their own around fiery chef Gordon Ramsay, but Ms. West proved she was the best of the best when she overcame her opponents and emerged the winner on the show Hell’s Kitchen.

Makenzie Dascenzo

This young talent, who impressed the judges on the popular program So You Think You Can Dance, says that her tics disappear when she is dancing.

Dave Pittman

Before James Durbin, there was Dave Pittman. He wowed American Idol judges, especially Neil Patrick Harris, during the auditions on Season 9, but was eventually eliminated because he forgot a line while he was singing.

Ruth Ojadi

Ruth, a young British woman with an incredible voice and fairly pronounced TS, is the subject of a recent BBC documentary called I Swear I Can Sing.

Pete Bennett

Charming, charismatic and funny, Pete Bennett is the Season 5 winner of the British reality show Big Brother.

Ariel Small

Ariel’s life story was told in the PBS documentary Different is the New Normal, which aired last year to much acclaim.

 

Do you know of a television star with TS who we’ve missed? Please tell us about them in the comment section below.

TS Awareness

Dancer with TS Makes it on So You Think You Can Dance


We’re thrilled that a talented dancer with TS has made it through the audition round on the dance reality show So You Think You Can Dance!

Take a look at this short video clip to see this amazing young woman (she was not named during the segment) show judges and the world her moves. Not only did she stand proudly and talk about being diagnosed with TS, but she also demonstrated that having TS can’t stop you from making your dreams come true!

Tune in to So You Think You Can Dance to show your support.It airs on CTV in Canada on Wednesday evenings. Check www.ctv.ca for show times and information.

In-Service Program TS Awareness Volunteerism

In-Service Feedback


Last week we profiled a number of our in-service presenters. Today we wanted to cap it off by offering you a glimpse into the audience’s reactions to in-service presentations. Here is what students, educators, parents and communities had to say after receiving an in-service from one of the TSFC’s skilled in-service presenters:

“The strategies and information were the strongest aspect of the session…I had limited knowledge prior and feel that I have the information and coping strategies I need”
—Teacher candidate

“The instructor was very personable with lots of hands-on experience and stories to share!”
—High school student

“My students were so engaged by the discussion..thank you so much for the wonderful and informative session!”
—Elementary school teacher

“You were such a hit! Everyone on staff is demanding that you come back again soon! We want to have you come again to do another session.”
—High school principal

“My son was really happy with the presentation…he came home excited that even HE learned something. Thank you so much!”
—Parent of student with TS

“There was so much that I learned about that I didn’t know!”
—Special Education Resource Teacher

“…it made such a difference to our daughter that you went in and had a session with the staff. Now I feel that everyone ‘gets it’!”
—Parent of student with TS

“Fabulous!”
—Coordinator of Students Services

To learn more about becoming an in-service presenter in your community, please contact Ashley at ashley@tourette.ca.

Fundraising TS Awareness Volunteerism

Jena’s School Project on the TSFC


History never looks like history, even when you’re living it. It’s easy to forget that history is made every day, and that we, the Tourette Syndrome community, are not only a part of it, but we actively create it.

Take grade 8 student Jena K., for example. For her school’s history fair, Jena did a project on the history of the Tourette Syndrome Foundation of Canada. As you can see from the photos, she did an outstanding job.

Jena not only raised awareness about the TSFC and TS, she also was personally a part of the Foundation’s history by participating in the 4th Annual Trek for Tourette.

Thank you Jena for reminding us that with everything we do for the TS cause, we create the history of the Foundation.

Congratulations on an awesome project!

Children/Youth TS Awareness

Daniel’s YouTube Video About Tourette


A big round of virtual applause for one of our young TSFC members, Daniel Q. Even though his video, “Let Me Tell You About Tourette’s Syndrome”, lasts only 1 minutes and 55 seconds, it has a powerful message and a lasting impact. Daniel skillfully addresses the topics of tolerance, understanding and thriving in spite of adversity in a visually interesting way.

Daniel, we thank you for sharing your perspective, your creativity and this positive message! Way to go!

What do you think about Daniel’s video? Tell us what you think by leaving a comment.

If Daniel said this to you in person, what would you say back?