Ask Dr. Ticcy: Should I monitor my other son for signs of TS?

Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada 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.”

Dear Dr. Ticcy,

What are the odds of two boys in the same family having Tourette? Our eight-year-old was recently diagnosed with TS and now we are noticing a lot of the same signs in our six-year-old. It’s only been going on for about a month and I know that a correct diagnosis of TS needs to have at least one year of tics. Should we continue to monitor?

Concerned Parent

Dear Concerned Parent,

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The “perfect” ending to the school year

One of the biggest internal struggles that parents of special needs children face is when…and how far…to “push” your child. Your goals are usually the same as any other child…to be happy, make friends, have others in their lives who love them and treat them well, get through school, and be as independent as possible. How you get them there can be the most complicated part.

One of my best friends is the most successful coach in college gymnastics. One of her many gifts is the ability to motivate and inspire…which doesn’t mean holding your hand…it involves giving you a little kick in the pants at times. In going through our most difficult years with our son, she was one of the only people I talked to about all that was going on here at home.

I was scared, and depressed much of the time…and frankly a lot more unsure of myself and down in the dumps than I had been before…thank you for hanging in there with me! I had young children, all my family lived at least 15 hours away, my husband was busy with a crazy job, and I was a NJ girl living in the south…I didn’t quite fit in. She became my family…my mentor, the voice of reason, and my best friend.

To sum up what I learned from all of my conversations with her…when you have a child that struggles, you can’t focus on the excuses. Your focus has to be on visualizing what they need to accomplish and get to work. For a child who has a health issue, it’s important to start early by educating them on their disorder, their treatment, and how to manage it…from appointments with Drs – to getting out and taking their own medication.

The world is not going to be kind to them at times, and they are going to get knocked down…that’s just a part of life. What children need to learn is how to pick yourself up, dust yourself off and keep moving forward.

Sounds simple…far from it.

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Instructional tools from Social Thinking: A Teacher’s Review

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

Social skills and social thinking are not easy for children who have neurological disorder.  Careful and intense instruction can help a child learn these skills which will improve their capacity to learn in all areas.

Before I give my support to these instructional tools, I’d like to state that I have no financial interests in this resource and receive nothing from the author or publisher.  I’ve merely used the resource and found it to be an effective tool for teaching children with behavior challenges to make positive changes in their lives.  In fact, I was so impressed with the resources, that I purchased a set for my stepson’s (self-contained behavior) classroom teacher. Using the resources together, we were able to establish common language and understanding to support my stepson’s profound behavior challenges at school and at home.

Profoundly challenged by TS, OCD and ADHD, my stepson had absolutely no self-regulation skills.  He lived his entire 10 years (at that time) “in the moment” that he was experiencing.  He’d hyper-focus on himself only, and gave absolutely no thought to future or past events or to others in any given situation.

Even if he was given candy, it would be forgotten (forever more) as soon as it was out of his sight.  He did not connect responses of other people to past events or behaviours.  Without any ability to control himself, he was unaware of “cause and effect“.  He didn’t even see “the effect”. He’d wonder why he was in trouble, react with violence, be consequenced, then move on (without learning anything to prevent recurrences).

As a special education teacher with more than 20 years of teaching experience, I can confidently state that these resources were tremendously helpful.  When challenging behaviors arose, my family members were able to identify the behavior (“You’re seem to have a bit of a Glassman acting in you” or “I’m sorry, that was a total Topic Twistermeister”).

Although there are a number of resources listed on the website, my spouse and I selected two story booklets and a teacher’s resource.  The first booklet is titled, “”You are a Social Detective”, the second is titled, Superflex”, and the teacher resource is titled, “Superflex… A Superhero Social Thinking Curriculum.”

Instructional Thinking Superflex Curriculum: Neurologically Gifted Social Thinking

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Please support the “What Makes Us Tic” documentary project

A good documentary for educating about Tourette’s. With support it, could become a great documentary.

A lot of people either haven’t, or have only heard stereotyped references to it like “the swearing disorder.” Tourette Syndrome (TS) is actually a neurological disorder that is characterized by tics, which are uncontrollable movements or vocalizations.

TS is often judged and misunderstood because of the stigmas that have been created by the media and and a general lack of information about the disorder publicly. I intend to change that.

Through the power of film, What Makes Us Tic is an insightful documentary that aims to promote Tourette Syndrome awareness in a positive way, and give a fresh perspective of what living with this neurological disorder is really like.

It will also provide resources for individuals living with the disorder, as well as their parents, teachers, friends, co-workers, or anyone else who may be affected by their TS. But ultimately this film really is for anyone who wants to learn more about Tourette Syndrome! Continue reading

Coprolalia, Part 2: Coping with Coprolalia

Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

Coprolalia: Neurologically GiftedCoprolalia can be a particularly distressing symptom and a lifelong struggle for an individual with Tourette Syndrome. Stigmatization, shame and isolation must be reduced by the efforts of the individual, their families, their community and society.  Strategies to manage coprolalia will target improving the acceptance and understanding of this difficult symptom which will in turn reduce the frequency and intensity of it’s expression.

Understanding the nature of coprolalia is essential to understanding strategies for the management of coprolalia. Be aware that coprolalia, a symptom of a neurological disorder, will not go away.  If the symptom is not being expressed, the individual is either effectively managing or suppressing it’s expression.

Suppression is NOT a desired response.  Suppression requires the individual to constantly focus on the symptom reinforcing coprolalia and exhausting the person’s mental capacity to do anything other than suppress.  Obsession with suppression may lead to a constant internal struggle.

Effective management will serve to increase everyone’s understanding about coprolalia, reduce stress and prevent hyper-focussing on the symptoms. In a sense,  just by changing how we think about and react to coprolalia we can reduce it’s incidence and negative impact. Continue reading

Support for young people

NOTE: Please welcome Tourettes Action, an advocacy group based in the United Kingdom, to TSParentsOnline. Below is some information they have for parents to give their children who struggle with TS.

Most people with Tourette Syndrome (TS) are diagnosed as children or teenagers. Children generally start to tic between ages five and seven, but they can start as young as three years old.

There is a lot of information about TS out there, but Tourettes Action knows that because it is a complicated condition a lot of the material can be quite difficult to read, so we have put together information specifically for young people.

Tourette Syndrome – the simple truth

Tourettes Action asked young people what questions they wanted answered about TS, and we’ve attempted to answer them here, including:

  • What is TS?
  • Will I swear?
  • What might help my tics
  • Should I tell people in school that I have TS?
  • Can I do the same things as my friends, like going to the cinema?
  • Will anybody want to go out with me?
  • Will I be able to get a job?
  • Is there anybody famous with TS?

You can read our answers to all your questions in our guide for young people, Tourette Syndrome – the simple truth.

Other TA information for young people

  • Facebook follow Tourettes Action to find out all the latest news about TS and upcoming events
  • Twitter follow us for the latest news on TS
  • TA forum share your experiences with other people your age with TS
  • YouTube visit our YouTube page to watch videos from fellow ticcers talking about what it is like to have TS
  • Support in school information for you and your parents to get the best support in school, university and further education

Other information for young people with TS

Books about TS for young people

You’ll find more books and information in our Resources Library.

Resources for teaching children about their disorders?

What are your favorite resources for teaching children about their own Autism, Asperger’s Syndrome, Tourette Syndrome, Sensory Processing Disorder, etc.? The boy is getting bigger and asking bigger questions about himself. I see him starting to identify with and use titles, but I don’t want to him to be defined by these titles alone.

Read more from me on my Momma Has Monsters page on Facebook.

We Connect Now takes individuals with disabilities to the next level

We Connect Now is a website and nonprofit organization dedicated to uniting people on issues which affect people with disabilities, with a particular emphasis on college students, higher education and employment.

We are often asked, “What’s next for We Connect Now?” The answer is that We Connect Now does not have a master plan. We Connect Now was born out of a basic idea to create a website to address a need that I found at that time for a vehicle to provide easy access to general information about disabilities and higher education, in a centralized place, and that would keep college students with disabilities connected on issues of their choice.

After some time running the website, We Connect Now has grown from a website to an organization with a presence on campuses and events and it is growing from there.

We Connect Now is user-generated and responsive. The blogs we add are not because of a preselected topic. We add the blogs that our followers send us on the topics of their choice. We also make space for items people send us, even if the item does not really fit into our site’s pre-established sections.

A good example of this is a recent posting we did of a student’s letter to the Department of Education regarding his claim of discrimination based on disability in a graduate program. We Connect Now connectors keep our events section busy; what they send us is what is posted. They are We Connect Now on the ground. Continue reading