What do you choose?

A new school year is a new beginning.  In our house, there’s a combination of excitement and anxiety right about now.  We’re coming off the high of a breakthrough summer for both Maddie and Max who spent 7 weeks at sleepaway camp.  When they were each diagnosed with Tourette at the age of 5, I wouldn’t have believed this day would come.  They both grew beautifully and had a great experience despite some typical homesickness and social challenges.  Medications were managed seamlessly and to both the kids felt “normal” as their bunkmates were frequenting the infirmary for their own meds.  So many kids take something on a regular basis which certainly helps to normalize the experience for kids like mine.

As a self-awareness junky and coach, I spent time while the kids were away reflecting on the experience of them being at camp.  What I noticed was a mix of anxiety*, excitement that we could all handle the separation and the awareness that part of the reason the kids were able to go away was simply that husband and I believed they could.  We had confidence that they would be okay.  Who we are in our parenting (supportive, doubting, trusting, nervous…all of it) is absorbed by our children.  When our child has special needs, the natural worries of raising a child become amplified.  I get that on a cellular level given my own experience.  What I didn’t know until I began the journey into my own inner work, is that even a parent of a child with differences gets to choose.  We get a say in how we relate to them, how we relate to ourselves as their parent and how we relate to their unique journey.  I choose to relate to my children as whole and perfect just the way they are.  I choose to stand for them to push past discomfort and overcome obstacles with pride.  I choose to notice when my own fears about who they are and who they are not are creeping into the space so that I don’t map those fears onto them.  I choose to honor and embrace their differences.  I choose to learn from them and to love them fully.  And I choose forgiveness for myself and for them in the moments when I forget all of this.

As the new school year brings with it jitters, excitement and maybe even new tics, I invite you to become present to a new beginning, wiping the slate clean from last school year and the summer.  Get intentional about who you will be as a parent; acceptance, love, strength, resilience, light, stability, belief…  Boldly choose and then post reminders in places around your home where you look often: the bathroom mirror, the back of your front door, in your bedroom.   Practice self-forgiveness when you forget your choice (because inevitability you will) and then get back on track.

I’ve heard from so many TS parents who have read my posts and found comfort in knowing they are not alone.  I am grateful for the opportunity to support others on a similar journey.  As always, I am happy to chat, to provide some mentoring or to simply listen.  As a Mom who gets it, sometimes just knowing that you’re not alone is enough to get through a rough patch.

Emily Golden, ACC  – Coach & HR Consultant
Golden Resources, LLC
emily@golden-resources.com

 

*Yeh…anxiety is a part of me.  What if they aren’t happy?  What if their tics flare and they are made fun of?  What if they don’t get enough sleep and they become overly emotionally as a results?  What if… What if… What if….

What are the chances that my son or daughter will have TS and OCD?

OCD (Obsessive Compulsive Disorder) or obsessive compulsive behaviors** (OCBs) and Tourette, as well as another tic disorder called Chronic Tic Disorder* (CT), often appear together. Research shows these conditions are probably genetically linked and as a result, we tend to see both conditions run in families.

Before we discusses the risks of being born with these conditions, let’s look at some general stats on TS and OCD:

  • 25%-50% of people with Tourette or Chronic Tic Disorder meet the criteria for a formal diagnosis of OCD
  • 80% of people with Tourette or Chronic tic disorder may have obsessive compulsive behaviors
  • 30% of people with OCD have a family history of co-occurring Tourette or Chronic Tic Disorder
  • A lot of recent research including twin studies, neuroimaging studies, and a genome-wide complex trait analysis, suggest that there is a significant genetic association between TS and OCD

A large study published in 2015 took a look at these two conditions. Here are some of the key results:

  1. If your oldest sibling has TS or chronic tic disorder plus OCD, you have a significantly higher likelihood of having these conditions.
  • The risk of having TS or Chronic Tic Disorder (CT) plus OCD was higher for people who had an oldest sibling who was affected by these conditions
  • People with an oldest sibling with TS/CT were 18 times more likely to have a diagnosis of either Tourette or Chronic Tic Disorder
  • Individuals with an oldest sibling with OCD, were 5 times more likely to have an OCD diagnosis than a person who does not have an oldest sibling with OCD
  1. If you have a brother or sister with TS or Chronic tic disorder, you’re more likely to have these conditions than other people.
  • If one of your siblings has TS or CT, you have a 9.88% risk of also having CT/TS
  • If none of your siblings has TS or CT, you have 0.42% risk of having CT/TS
  1. If you have a brother or sister with OCD, you’re more likely to have these conditions than other people.
  • If one of your siblings has OCD, you have a 4.01% of having it as well
  • If none of your siblings have OCD, there is a 0.84% you will have it
  1. For full siblings with Tourette (same mom and same dad), the chance that their brother or sister will have TS is greater than for half-siblings (either same mom or same dad).
  • This suggests that there is a genetic contribution or basis for TS/CT

What is does this all mean?

Simply put, this is what we know right now—if you have a family member with TS and OCD, you’re more likely to have TS and OCD, too. Your chances of having TS and OCD are a lot greater if your older sibling has these conditions.

Please share your experiences or tell us what you think about this!

 

*Chronic Tic Disorder or CT: the presence of either involuntary motor or vocal tics

** Obsessive compulsive behaviors (OCBs): Reports show that 11-80% of patients with TS have OCB

Sources:

Browne, H. A. et al. “Familial Clustering of Tic Disorders and Obsessive-Complusive Disorder” JAMA Psychiatry, 2015: 72 (4).

Carroll, Amber & Robertson, Mary. Tourette Syndrome A Practical Guide for Teachers, Parents and Carers. David Fulton Publishers: 2000.

https://www.tourette.ca/tourette-blog/pub:219/What-are-the-chances-that-my-son-or-daughter-will-

Ask Dr. Ticcy: My Child Won’t Go to School

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.”

Dr Ticcy:

Help! My kid won’t go to school. I tell them to go and they say no. They say they feel sick, they cry and they tell me that their stomach hurts. They get really anxious. I don’t what to do!

From,

Out-of-options

 

Dear Out-of-Options,

It’s common for kids to feel some anxiety about going back to school. Being firm with your kids and telling them, “you must go back to school” is an option. For many, this may be enough. However, like yourself, some parents try this and things don’t get better. If separation anxiety or back-to-school anxiety becomes overwhelming or disruptive, it is time to think about doing something about it.

Where to begin? There are several options and possible strategies you might consider:

Professional support Speak to a professional counsellor, doctor, or psychologist.  They can make further recommendations, which may include behavioural therapy, prescription medication, gradual re-entry to school, and rewards for school attendance.

Transitional objects Teachers can encourage students to bring a “transitional object” from home (ex. favourite stuffed animal) and to take a special object home with them, such a drawing or a book. This can help your son or daughter feel more comfortable.

Touching base during the day You might try pre-arranging a particular time when your son or daughter gets to call, text, or email you. This could be a reward for completing work or simply a plan to help them get through the day.

Improve the drop-off Morning drop-off can be particularly tough. If possible, you might consider having someone else drop off your child to make it easier for your child to separate and enter the school.

Some separation is okay You may be tempted to spend every waking second with your child but this can make it harder to seperate. Consider trying to systematically increase the amount of time your son or daughter is separated from you while in the home or outside of school.

Additional Support Additional adult support may be needed during interactions with peers, lunch hour, and during transitions. During new or novel situations, teachers can help students by providing them with specific instructions or special tasks. For example, a teacher could tell the student, “When we get to on our field trip tomorrow, you can help by checking off each student’s name as they get on and off the bus.”

Take the scariness out presentations Talking in front of the class can be a source of panic and anxiety. It may be a good idea to allow anxious students to watch others do their presentations before asking them to get up in front of the class. Talk to your child’s teacher if you think this may help. Practicing presentations at home can help too!

Make a plan Together with the student, teaching staff (and possibly parents) can plan what the student should do when they feel panicky. This plan may include breathing techniques (ex. diaphragmatic breathing for 10 breaths), thinking about how a good friend might handle the same situation, exiting the classroom for a brief walk, standing out in the hall for a few moments, and/or going to the office or special education resource room.

I hope these suggestions help you and your child.

Best wishes,

Dr. Ticcy 

Guest Blogger Danny Enright: CBC Show Features Man with Tourette

Last week’s episode of the CBC radio program “Wiretap” featured a man with Tourette Syndrome describing his experiences with online dating. So much of what he said resonated with me (diagnosed with Tourette Syndrome as an adult): the range of people’s reactions to this information, the feeling of elation when a tic is released, and even his penchant for bird calls!

Despite my tics being relatively benign and amusing on the spectrum, I too am constantly concerned about how my tics are being perceived, or if I’m wearing out my friends’ patience by asking them 100 times a day “Are you a chicken?” I created a folded brochure entitled “Why is Danny Saying Monkeys?” to explain Tourette Syndrome, including my own particular variety. One paragraph states “Tourette is a good way to detect awesome people… because those who love me despite my Tourette, or even because of it, are awesome!”

At the end of the piece on Wiretap, the man with Tourette says, “If I find the right woman for myself, and I let loose in bird calls, ideally she would join me. That’s what I’d like.” I really identified with this, because I have many people in my life who do just that, and it really helps me feel less outside the norm. One trick I do when I have to wait at a restaurant is to give my name as “Monkeys” so that when the server calls out “Monkeys!” I’m not the only person in the restaurant who’s doing it!

Here’s the link: http://www.cbc.ca/radio/wiretap/character-study-1.3027303 (Tourette-related content starts at 16:30 into the episode).

Danny Enright

Greater Vancouver Chapter

4 things someone with Tourette wants you to know

EDITOR’S NOTE: This blog entry was originally posted by Brittany Hays to ThoughtCatalog.com.

I’m sure at some point in our lives we have all come into contact with someone who has Tourette Syndrome. For those of you who haven’t, well, you have now. I have Tourette. I was diagnosed around age 9 in the fourth grade. Talk about trying to fit in. I never did ‘fit’ in, but looking back I’m glad that I didn’t.

To me, being able to live your life without the worry of upsetting a specific group of friends makes more sense, and quite frankly involves much less drama. I hate stereotypes, mainly because they give off false information that aggravates the person or group that you are stereotyping.

One stereotype that I get put into for having Tourette is that I cuss and say swear words. I have never done that. Tourette isn’t about cussing. In fact only 10 percent of people with Tourette actually cuss involuntarily (it’s called coprolalia):

1. If Tourette’s was only about swearing, I think I might actually enjoy it more. Getting to say whatever is on your mind simply because you cannot help it seems awesome, right? Well, it’s not. Try applying for a job. Who is going to want to hire someone who says “f— you” every two minutes? Not many. It’s not fun or funny. It’s humiliating. Tourette’s is about acknowledging society’s ignorance, and accepting that people are people. Now, I am not saying that I don’t ever catch myself stereotyping or judging people because I do. I mess up, and act impulsively, just like you because…well….I’m human also.

2. Have you ever been told to stop sneezing? Probably not, because most people know that you cannot control it. Imagine getting asked that when you go to order food at a restaurant because you are constantly sniffing, or are shopping in the local mall and you smack your lips all the time. It gets frustrating, but Tourette is about realizing people question everything, and that’s okay because it’s human nature. Honestly, if people didn’t question what I was doing, then I would get worried. It shows me that it’s human nature to be curious. By asking what I am doing, it lets them learn something new, and hopefully they can pass it along to others.

3. To me, Tourette is about learning to laugh at yourself and acknowledging that doing so is acceptable. If you can’t laugh at yourself, then people are going to assume that your Tourette is a weakness for you. Yes, at times I would enjoy a little break, but in the end I am a stronger, more intelligent person because of my ability to embrace what would be considered a weakness.

4. My Tourette has allowed me to appreciate differences in people. It’s taught me to not only be more accepting of myself, but also of others. You never know what anyone is going through until you have been in their shoes. Having Tourette has given me a way to see the world in different ways. I aspire to learn about others, so that I can learn about myself. Aren’t we all connected? Don’t we all deserve dignity and respect?

You see, I don’t want sympathy from people, or to hear, I’m sorry, that must suck. Yes, at times it does suck but you know what? I am alive. I have a house, and wonderful parents who have provided me with a life of happiness, so if the worst of what I must go through is to have this disorder which in turn has only made me a stronger individual, then I am grateful. I am grateful that I do not have to wake up in a hospital bed, or out on the streets. I’ve been blessed, even if that blessing seems hidden at times.

Embrace your differences. If each of us were the same, this world would be dull and boring. Be curious without being cruel.

Guest blogger: Sophia and her TS

Sophia talks to Tourettes Action about her experiences of living with TS and what it means to her.

For me, Tourette’s made its appearance a little later than usual. I was 16 and had just been diagnosed with autism spectrum disorder, OCD and depression. Antidepressants were prescribed to help me manage my anxiety.

One morning, I woke up and was no longer in control of my body movements, my arms and legs were doing exactly what they wanted to, as if they were not a part of my body. I kept making noises, barking and meowing. I couldn’t stop. The inside of my body felt as if there were ants running inside me, combined with a strong burning sensation, a building tension that reduced ever so briefly, but only after a ‘tic’.

From that day, my tics became more complex and at one stage the movements were constant. I shouted things out and repeated other people’s words, phrases and actions. A constant feeling of unease, not knowing what was going to come out of my mouth until it had been said. Not only did I have to adjust to my new situation, I also had to accept the stares of onlookers, many of whom had only ever seen Tourette’s in the media.

Unfortunately, the media often has a tendency of over focusing on the ‘swearing tic’, known as coprolalia, which only affects a small number of those who have Tourette’s. “I wish I had Tourette’s so I could just swear all the time” is a phrase that I’ve heard more times than I would have liked to. Coprolalia is involuntary and certainly not something Tourette’s sufferers enjoy having, nor do they use it as an excuse to swear.

Tourette’s is more than just tics, many of us have multiple co-occurring conditions that have their own symptoms. Although Tourette’s is manifested outwardly, sometimes it is the symptoms people can’t see that cause us the most problems.

Two years passed, along with lots of hospital visits. Tourette Syndrome was mentioned throughout, but my official diagnosis was given to me at the age of 18. Now, I am studying Psychology at University. My tics change in frequency and severity, new tics emerge and old ones return. I have slowly learnt to accept my conditions and I am fortunate in that I am surrounded by wonderful people, who are incredibly supportive.

I think it is important to educate and challenge the stereotypes. To become your own advocate and to embrace what Tourette’s has taught you. To those reading this who have Tourette’s themselves:

“Keep Calm and Tic On!”

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.

mind1

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.

logo_tourettesaction

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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My Medicine of Dance

This blog post originally appeared on BrittanyFichterWrites.com.

I don’t watch Dancing with the Stars often, but when I heard that there was going to be a  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.

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Canadian Science Fair winner covers Tourette Syndrome

EDITOR’S NOTE: This blog was submitted by Austin and Tricia Dilworth on behalf of their son, Austin.

My 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 9, 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.

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.”

New TS study finds parallel between humans and mice

The writer of this guest blog, Ethan Macdonald, is a researcher of Tourette Syndome and cognitive science at McGill University in Montreal, Canada, who had challenging TS symptoms during his adolescence.

The 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 because of 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: Continue reading