52 Weeks of TS: Week 38

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 37 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

My life is a waste of time. Now don’t jump to conclusions and take that the wrong way. The reason I’m saying this is because I waste so much time in my life. I don’t think many people realize how much time is wasted having TS. I often wonder how much more free time I’d have if I wasn’t so focused on ticcing, or suppressing my tics, and don’t even get me started on how much time I waste with my OCD’s. Having TS is a full-time job, and I’m not being paid for it. I need to go to the human resources department and find out where my paycheck is.

The reason I am talking about wasting time has to do with a big event I was part of this week. Yep, I’m talking about Tic-apalooza. I packed all my stuff a week before leaving because I’m so OCD, but because of my OCD, the night before I left, I had to unpack all of my stuff and repack it just so I was sure I had everything I needed.

I was leaving the safety of my home, and going somewhere where I knew I was not going to be able to run to the store and get anything I forgot. Yes, I made sure I had my basic stuff; clothes, sleeping bag, etc. However, that was not my main concern. I needed to make sure I had enough hand sanitizer, Lysol, tissues, and hand wipes. I was headed to the wilderness with a bunch of kids, I was not messing around, and no germs were getting in this body.

As for Tic-apalooza, what can I say? I’m somewhat left speechless. It’s hard to put this weekend into words, but I’m going to try. Here’s a few. Amazing, astonishing, remarkably incredible, miraculously mind-blowing. I guess you could say I had a wonderful time. I was having anxiety about venturing to this camp, and worried about spending time with so many kids, and dealing with my OCD’s, but I went and felt completely at home. There were over fifty campers with TS, and it was such an inspiring weekend.

There was no hesitation in my mind that volunteering to be a counselor for this event was the right thing to do. However, I was concerned because this was the first time I had been a camp counselor. In fact, this was the first time ever going to camp; I never had the opportunity to go away to camp as a kid, which brought on more excitement and trepidation.

It was such an incredible experience to spend the weekend with these brave fifty kids. Friday morning when I arrived at the camp, I was excited when I saw numerous hand sanitizer machines all over the mess hall. Even though I brought enough for the whole camp, it was a great feeling to know that they had some all over the camp.

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Tics are better post-Christmas

Kane’s tics have been a lot better since we have gotten over the excitement of Christmas! He has been busy playing with all of his new things! He is into MineCraft big time right now and loves spending his time reading about it and learning more on how to build and construct things inside his world.

He has been using these buildings that he builds to help ‘control’ and ‘focus’ on controlling his rage and his tics. He uses the focus point of “GlowStone Castle” as his happy place to go when he is feeling upset. This has helped with him so much.

Sometimes he goes in my bed, gets under the covers and calms himself down while creating the world inside of his mind. Some may think this is silly, but for Kane it works great! Especially for those days when the anxiety attacks are happening a lot!

Guest blogger: “I swear it isn’t true”

EDITOR’S NOTE: This post was shared by Tourettes Action on its Facebook page. It originally comes from the blog of guest blogger Adrian.

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For nearly three years I’ve written a blog about running and mental health, and in particularly the impact of exercise on mental health, and vice versa. I’ve gone from a non-runner seeing everyone else do it, to a seasoned marathon runner, who alas is still beaten by the unprepared drunk smoker.

I’ve raced alongside men and women of every height, shape, size and disability and have had every sense of ego beaten out of me. More importantly, I hope my blogs have opened up a discussion about mental health, which still leaves millions suffering in silence due to the stigma attached, and the lack of government support for what is a huge problem in the UK and globally.

Through running, sales and various other events online and offline, I’ve managed to raise around £5000 for Mind and it is without doubt the best thing I’ve done, except perhaps for inventing the Snickers bagel.

However, I feel the need to apologise. I’ve written in depth of my own story, usually trying to use humour to keep people reading, thinking and supporting the cause. I’ve admitted my own battles with depression which have taken over much of my life, and which I’m aware will always be there.

Sometimes it’s the only way I see my life ending, but then something comes along and gives you hope. It does always get better, we all hang on to that fact, but battling year after year can take its toll on anyone. All any of us can do is keep talking, listening, trying to understand and realising that whatever problem someone has, physical, mental or just a difficult time in life, we’re all here together.

So why am I apologising? Well, I’ve held back a lot in what I’ve wanted to write about. I don’t just suffer from depression although it’s been a huge part of my life. I find that easier to write about because it impacts more people and helps more people relate, Mind is big enough charity to make real positive change and needs our help. I wanted to fight stigma, and it remains slightly cool because Stephen Fry has it. I’m half joking.

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Yet I have Tourette Syndrome. I hate the words. The sound of them, the sight of them, even grammatically, is it Tourette’s Syndrome? I suggest so given it’s named after someone called Tourette. Why couldn’t he have been called Gilles de la Awesome. I’ve got awesome syndrome. Or as the public seem to know it, hilarious swearing disease.

The butt of many jokes in TV and films, always the same with someone swearing inappropriately at a person or quiet location. I’m yet to see a genuinely funny Tourette’s joke. Perhaps that’s my main problem with it. I’m more offended as a comedy fanboy than I am as a Tourette’s sufferer. I once mocked someone drunkenly walking into a lamppost and several seconds later twitched myself into the same lamppost and fell over. Tourettic retribution.

The public perception has meant many people would have no idea I have it, some might not believe me now, some haven’t in the past. Sometimes I’ll be controlling it very well, maybe for months, but it is very much still there. More of you will of course be thinking, yeah, we knew all that you twitchy freak. And I have no problem with that.

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9 ways a Naturopath can help with tics and Tourette

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Today I took Stink back to Dr. Carroll. It had been more than 3 years. Instead of fitting halfway on his exam table, Stink took up the entire table, his size 8 mens Nike’s hanging dangling off the edge.

As usual, Dr. Carroll was calm, cool and collected. Just walking into the office I felt a sense of peace. I’d call it the placebo effect of Mama about to get some help, but Stink himself barely ticked at all.

Note to self: We need a calmer environment at home. Working on that.

Note to readers: Here are things Doctor Carroll had to say about tics: Continue reading

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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Why is my child mean?

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as a 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.

There have been many parent posts online regarding the general and persistent negative behavior patterns of their children.  They describe their children as being “mean” on a regular basis.  It’s not uncommon to see this default behavior in children who have neurological challenges.

In my presentations, I call this the “Awfulizer Syndrome.”  To these children, everything is awful.  They always seem annoyed or angry.  They are routinely mean or insulting.  They often engage in name calling and typically communicate in an unkind or angry tone of voice.  Generally negative in most aspects of their daily life, they are most often disagreeable.

Without intervention and support, it is difficult to correct these behaviors.  From personal experience, as a person who has overcome this challenge and a parent who has dealt with it, I can tell you it takes a great deal of effort to overcome this neurological affect.

Step 1:  Identify your child’s behaviors and the responses of your family members

Identify and address when your child is mean through his/her words, voice or actions.  Be sure to do this when your child is in a calm and receptive state of mind.  Session need to be frequent and on-going.  Share your feelings with your child.  Explain how their words/tone/behaviors make you feel, and how it affects your thinking about them (e.g. “Although I love you, your tone of voice makes me feel mad and I don’t want to be around you when you are mean to me”).  This response is a natural consequence – people don’t want to be around people who are mean or unkind.

Why Is My Child Mean?!?  NeurologicallyGifted.com Continue reading

Should I medicate symptoms of my disorder?

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.

Medicate Symptoms of My Disorder Neurologically Gifted

Many years ago, I (the lead Special Education Teacher in my school) was asked by the principal to tell a parent that her child needed to be on medication in order to succeed in school.  I refused to do so.  I believed that although medications might have helped this child focus in school, it was not necessarily the only answer.

I saw that this student’s deficits could be managed without medications, given he received focused support at school and at home.  I knew the academic support was provided by parents at home, and I knew they could be provided at school because his teacher had the understanding and training to provide the necessary accommodations to the student.

My advice is as follows: Continue reading

School meetings: How to make them easier

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.

School meetings are most often difficult for the parent but so important for your child.  Your child is special, requires special accommodations, your child’s behavior doesn’t follow the normal or expected behavior or your child isn’t learning as well as he or she could.

Perhaps it’s not your first meeting or perhaps the strategies being implemented aren’t working.  Perhaps your child’s teacher or school administration isn’t understanding your child’s difficulties and differences or are unable to offer help.  In any case, it usually provides for a stressful time for the parent … trying to make things better for your child.

I have attended countless school meetings.  My son, having Tourette Syndrome, Attention Deficit Disorder, Obsessive Compulsive Disorder and Oppositional Defiance Disorder, provides an unending barrage of challenges for the adults who help to shape his life.

Some of these school meetings have gone well, some have been a complete disaster.  I have survived them, dreaded them and finally, I now feel blessed that the adults in my child’s school understand his differences, see his challenges and strengths, listen to him and help to guide him and teach him.

School Meetings  NeurologicallyGiftedIn the past, have been at school meetings because my child was suspended for behaviour that was out of his control.  I have been to school meetings where I have been face to face with an adult who told my son he was faking and didn’t have Tourette Syndrome or coprolalia.

I have been to school meetings where I have been asked to keep my child home for all or part of school days.  I have been to school meetings where administration has asked my child’s psychiatrist how they can “turn a blind eye to his behavior and just let him get away with it?”  It has been a very heartbreaking and difficult road.

I have not always been able to follow these tips that I will share, but I do know that even the really, really bad school meetings would have been a little better if I had been able to remember these tips for school meetings: Continue reading

RAGE!!! Part 2: Look, listen & focus

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.

Rage triggers a biochemical response which “over-rides” cognitive processes such as choice, reasoning, perception, rational thinking and self control. (See Neurologically Gifted’s article Rage 1: About Rage for a full discussion about Rage). By the onset of a rage episode, the sufferer is cognitively “paralyzed” by the body’s chemical and hormonal changes.

At this point, calming and coping strategies initiated by other people become ineffective.  Recurring rage tends to make families feel hopeless and out of control.  The individual with rage typically feels shame and guilt after they have calmed after a bout of rage.  Everyone can become fearful and feel powerless against the rage.

On the other hand, (and where hope lies) there are deliberate choices and coping strategies that can be used to prevent the onset of a rage.  Finding the right timing and the self-motivation to employ the coping strategies is a tremendous mental challenge that requires practice and support.  Learning and using strategies to prevent rage is a challenge for both the individual with rage and the family.  It takes time and effort, but through repetition and practice, rage episodes become less volatile.  When I explain this challenge in my presentations I draw upon my life experiences.

Stop, Look and Listen

In young children, rage can quickly become a default behavior. By age 6, our son’s default behaviour was full-blown rage, and he would be very quick to attack his mother verbally and physically. As he grew, he was getting bigger and eventually could no longer be tucked under the arm and carried to his room.

His mother’s default behaviour became fearfully tip-toeing around her son, in the hope that this would keep him from raging and protect herself.  She had a “safe room” in the house – a crawl space with a door that opened outward so he couldn’t kick it in, a phone to call for help if he was unsafe, tissues for her tears and book and a chair to wait out the storm.

Look neurologically giftedThe first step to changing the rage cycle is to scrutinize the way rage manifests itself in your family.  Carefully observe your family members reactions to rage.  What feelings does it elicit in each member of the family?  What are your family’s responses when a rage occurs?  Typically a pattern of behaviour will become entrenched along with the attached feelings.  These are your default behaviours which will need to change as you provide a new response to rage. Continue reading

Coprolalia, Part 4: Coprolalia myths demystified

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.

In case you missed them, part 1 of this series discussed the nature of coprolalia. Part 2 talked about coping with coprolalia. And part 3, mentioned some action steps you can take when dealing with coprolalia.

Myth: Children with coprolalia come from homes where they are exposed to obscene language and/or inappropriate material. 

Children who have neurological differences with the symptom of coprolalia have brains that work atypically.  Despite often being diagnosed with Attention Deficit Disorder, children with ADD or ADHD are not lacking in attention ability, but their attention works differently than a typical child.

A typical child’s attention manages their environment by attending to what is important, (or what they are directed to), in the particular immediate situation. A child with ADD/ADHD has attention but it most often easily drawn outside the immediate situation and the child is said to be highly distracted.

It is not an attention deficit at all but rather the inability to focus that attention where it should be.  Often attention is drawn to and captured by what is brightest, what is loudest and what is most inappropriate. There attention flickers through all the available stimuli and if it settles it will do so on language, actions and social situations that are most different, most exciting and socially taboo or inappropriate.

Coprolalia: Neurologically Gifted

Actually the diagnosis Attention Deficit Disorder is misleading.  Ask any parent who’s ADHD child can play video games or watch TV for hours but can’t attend long enough to brush their teeth properly.  This phenomena is called hyper focusing and very common in ADHD children. To further add to this, it is easy to focus on things that are interesting, exciting or unusual to us.  It takes mental maturity,  skill and focussed attention to attend to things that we find boring.

So, the stage is set. Continue reading