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Thread: Newly Diagnosed

  1. #11
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Newly Diagnosed

    Thanks David!

    Fi,

    Many of those "Sticky" posts David alluded to in Tourette Plus: Related Conditions and Disorders might offer precisely the information and explanations she might want to use to explain Tourette Syndrome and the associated disorders.

    One of the references I use most often to offer an insight into why TS is so closely associated with OCD and ADHD is from the article by Dr. Marco Grados: TS, OCD, ADHD: Closer Together Than We Thought! | Tourette Canada Support Forum

    Tourettes Action has prepared presentations for schools about Tourette in the form of Powerpoint downloads from their website HERE

    Being a Powerpoint, your daughter can modify it to incorporate additional information about associated (comorbid) disorders, if she wishes.

    Another favorite source for information that I like is ADDitude where I glean quite a bit of information for our own Forum, thanks to their excellent resources.

    You may also wish to search through my own online archive located at Tourettelinks.ca

  2. #12
    Join Date
    Nov 2016
    Location
    UK
    Posts
    24

    Default Re: Newly Diagnosed

    Hi to you both,

    David - many thanks for replying. I've had a look at some bits and pieces in the comorbs section that you guided me towards. The OCD UK guide for children & teenagers looks like it might be a good help for us.

    Steve - again, many thanks for the info you've provided. I'm sure that my daughter & I can create a presentation using some of this. I don't know when she will be ready to present everything but we can take our time putting it together until she feels comfortable.

    You guys have been such a great help to a mum (and daughter) trying to figure out so many things!☺

    Fi
    Let your smile change the world but don't let the world change your smile! ☺😁😊

  3. #13
    Join Date
    Aug 2013
    Location
    upstate NY
    Posts
    366

    Default Re: Newly Diagnosed

    It sounds like your daughter is quite courageous!

    Here are a couple of resources that might be helpful.

    A young woman filmed herself educating her classmates about her TS: Tourettes College Presentation - YouTube

    I like that one a lot because it's concise and the presenter is, as she says, comfortable doing Tourette education. I've seen others that are much longer.

    Here are the Tourette Association of America's tips for peer education:

    Regardless of who gives the presentation or which materials are utilized, there are a few universal steps to ensuring a successful peer program:
    1. Begin by exploring medical conditions other than TS – tap into understanding and empathy about those conditions before drawing a parallel to TS. A simple way to do this it to ask students to raise their hands if they have heard of asthma, then ask them what they know about it. Follow up by exploring their knowledge of some other common medical conditions. Then point out, depending upon the age of the audience, that it would be inappropriate to blame someone –and wrong to tease or bully someone – for having such a medical condition.

    2. Matter-of-factly introduce TS as another medical condition, and concretely describe and discuss tics as symptoms, using analogies to make tics come alive (e.g. trying to hold back a sneeze, an itch you can’t reach in the middle of your back that becomes intensely distracting, what happens if someone tries not to blink, having the hiccups, etc.). Point out that just like asthma, etc., TS is a medical condition, and no one’s fault. If the presenter has TS, welcome the audience members to make observations about you – notice the tics – explain what the tics are, why you do them, that you can’t help it, that you have done nothing to cause it. This can serve as the opening for providing more detailed information about TS, types of tics, diagnosis, treatment options, etc. The detail and complexity of information offered will vary depending upon the age of the audience.

    3. Explain that TS is hereditary/genetic. Discuss the different types of traits people inherit from their parents, that medical research is ongoing and that TS is more prevalent in boys than girls. Discuss the fact that an individual with TS did nothing to cause it, that it is not contagious (high-five or shake hands with audience members) and that no one dies from it.

    4. It is critical to include some type of hands- on/experiential simulation exercise so that peers learn what it “feels like” to have TS. Depending upon age of audience, this can be as simple as trying not to blink for a set period of time, or as complex as writing, the Pledge of Allegiance (include a copy of the Pledge on a slide which participants can refer to) while contending with a set of assigned motor “tics” such as tapping their pencils three times whenever the presenter claps hands and crossing out and re-writing every third word all while the presenter is orally rattling off a detailed homework assignment that students are simultaneously instructed to remember. The goal of the exercise is to tap into empathy. After the simulation, provide time to debrief. Engage peers in a discussion about the challenges posed by the exercise. Encourage students to relate it to the challenges someone with TS faces every day, rather than something they experience for a minute or two. Depending upon the age of the audience, this exercise may also serve as a bridge to a limited discussion about ways to accommodate the challenges that TS may pose to a student during the school day and problem solving in terms of the ways peers and teachers may be of assistance to students with differences.

    5. Tell the audience that, despite their challenges, people with TS are just like everyone else – smart, talented, creative, etc., and can be every bit as successful professionally as everyone else. People with TS are teachers, doctors, lawyers, psychologists, business executives, chefs, actors, musicians, athletes, politicians, etc. Name some famous people with TS.

    6. Leave time for Q&A, answering questions simply and honestly. Do not be afraid to say you do not know the answer to a question.Do not be surprised if audience members try to “diagnose” TS in themselves or others. Let them know that not everyone who experiences a tic at some time in his or her life has TS and that it is a medical diagnosis that can only be made by medical professionals.

    7. Conclude by simply distilling some of the key information provided to reinforce the presentation. One way to do this is by showing an age appropriate video (see Appendix B for resources and age recommendations, and check the TAA website for additional materials).
    My personal opinion: I think it could be helpful to arrange ahead of time with one or two people in the room to ask some pre-arranged questions in case the audience doesn't ask anything. Also, I think it might be good to bring some short hand-outs to distribute at the end.

  4. #14
    Join Date
    Nov 2016
    Location
    UK
    Posts
    24

    Default Re: Newly Diagnosed

    Hi aparente,

    Thanks so much for your kind words & very helpful information. Really appreciate this.

    My daughter is looking through various bits & pieces at the moment and I will show her the details that you posted. I do think that she is quite courageous - it's not an easy time for her but she is keen to raise awareness in her own way. I have told her that I'm here if she needs any help with it but I'm leaving her in charge of what she's planning, so that she feels it's 'her' perspective, not mine. I don't know when she will actually give the presentation, this depends a lot on how she feels. However, if she can get it ready, it will be there for when she wants to go ahead.

    Fi
    Let your smile change the world but don't let the world change your smile! ☺😁😊

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