Conditional Corner: A Tourette testimony, part 1

Conditional Corner is a series that runs Fridays on TSParentsOnline. All stories, including this one by “Garry”, were originally published at Conditional Publications.

My earliest memory of being told that famous quote (the one known worldwide to all young ticcers as they grow and their Tourette becomes more noticeable) – “STOP DOING THAT” – was by my mum and my nan in the kitchen on that lovely sunny day in the mid-1970s.

Everyone had longer hair then, and even though I was only 5 or 6 at the time, I can still remember sitting on the counter, tilting my head back and looking toward the ceiling so the longer hair at the back would touch the back of my neck and the middle of my shoulders.

I really liked that feeling and for some reason wanted to do it again and again and again.  It was summer and I had my shirt off and it felt lovely on my bare back.  It seemed a really big deal to my mum and my Nan, though, and they were discussing whether I needed a haircut – as if it would stop this new bad habit!

Then over time I’d do it at the family dinner table and got slapped on the wrist for doing it so much.  Then I did it at school and forever after, as well as other things such as constantly blinking and sniffing.  And yes, forever after I also got shouted at to “STOP DOING THAT”, especially when in the company of my parents’ friends or other family members. Continue reading

New National Youth Ambassadors are unveiled!

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The following is from the National Tourette Syndrome Association. Teens4TS is extremely proud of each and every one of the 46 teens who last week became Youth Ambassadors!

The national Tourette Syndrome Association’s 2013 Trip to the Hill brought 46 newly trained Youth Ambassadors and parents (a total of 100 participants) to Washington DC from March 19 to 21 for three days of training and TSA’s Trip to the Hill.

The Trip to the Hill presents an opportunity for Youth Ambassadors to speak publicly about Tourette Syndrome and advocate not just for themselves, but for all individuals living with TS.

On Wednesday night, at a dinner to celebrate the end of the 2-day training sessions, Judit Ungar, outgoing President of national TSA, and founder of TSA’s Public Policy initiative, received TSA’s Public Policy Award.

On Thursday morning, March 21, at a kick-off breakfast, Peter Hollenbeck, former Co-Chair of the TSA’s Scientific Advisory Board and Professor and Associate Head of Biological Sciences and Purdue University shared his personal story about TS and gave uplifting advice to the Youth Ambassadors.

Then, at the Capitol, five members of Congress, the Youth Ambassador and family members, as well as congressional staff members participated in a Congressional Briefing Luncheon, an information session to raise awareness about TS. Continue reading

Learning to be content

doms-new-hairEaster and Passover are here. Didn’t we just have Christmas? How is this possible?

As it is for us every Spring, Stink’s tics are up. Part of it has to do with the pollen. Part of it has to do with the fact that he is recovering from strep throat. AGAIN. Some of it has to do with more video games and food cheats than usual this weekend. Maybe some of it has to do with extra school work?

Oh, and some might just have to do with the fact that tics come and go. They come and go. Ah, yes, they come and go. I’m not overly worried. A squeak here, a gulp there. Am I annoyed? YES. But do I know he’ll be fine? Absolutely.

We are out of his regular supplements. He’s just taking his Juice Plus (vitamins) and his focus pill. At some point I will plunk down the cash for his other regimeI suppose I’m just done trying to fix this. I can’t. I’m happy where he is right now. He’s a well-adjusted kid who tics. Could be worse.

I am not trying to sound cavalier. I still take my Zoloft. I still go to therapy once/week. But much of that has to do with my own artist desires being squelched as I put my real spirit aside to raise my kids. While on one hand I’d like nothing more than to go writing 60 hours/week for some TV show, in my heart (and I don’t mean this in some martyr way) I know my place right now is here with my kids.

So I write for my local paper and do theatre reviews. (Hooray for front row orchestra seats for Beauty and the Beast!) I do profile pieces for my daughter’s best friend’s papa who is a world renown artist. (See the piece on John Paul Thornton here)

I start my own websites on theatre reviews because maybe, just maybe, I will do this for pay one day. And then I, very slowly, work on my book on Tourette Syndrome.

I don’t have the answers for tics. And I don’t attempt to have any answers for life. But one thing I know is that there is a season for everything — for calm and for chaos. For twitches and stillness. For valleys and highs. I am learning to be content in less than peaceful circumstances, and I am ever so grateful.

What do you do when you are not worrying about Tourette? Have you made any progress in that department? Does it help that I continually remind you that a kid with tics who is confident is better than a kid without tics who is a dweeb?

I love you all. I love your kids. We are in this together.

Awareness walk for TS needs your support!

The first NJ Walks For TS at Ramapo College will take place Sunday, April 14, and it would be great if you could be there to help generate awareness, foster advocacy and raise money to benefit the statewide education outreach and peer advocacy efforts of the New Jersey Center for Tourette Syndrome & Associated Disorders.

But don’t take our word for it. Read up on everything that’s going on with this exciting walk, and register today if you can be in the North Jersey area. There are lots of opportunities for you to get involved. Check them out:

Admitting you have Tourette

Corey has developed a habit of getting up at 3 a.m. for about an hour to an hour and a half. Not sure why. He says he just can’t sleep anymore right now. Then he goes back to bed usually by 4:30.

I have to keep a food journal for him for 2 weeks for his neurologist, too. I guess he’s going to consult with the psychiatrist on that and see if they might be able to change some of his behaviors through dietary changes and physical therapy.

The PT is for his SPD, to determine what symptoms bother him most, and if and how he can avoid them to avoid a sensory storm. So much to talk about, so much to do. I worry, but I’m reassured that he was so open with both doctors about what was going on and how he finally admitted out loud to a total stranger that he has Tourette instead of burying his face in my arm.

The doc has a rule that Corey has to sit at one end of the couch and I sit at the other. I’m just there because it’s policy. All the interaction is between Corey and Dr. W. He had to tell him what he wanted help with, and his first words were “My Tourette Syndrome.”

Read more from me and Corey at our Tic Tic Boom page on Facebook.

Conditional Corner: I hoped to become the doctor I never had

Conditional Corner is a series that runs Fridays on TSParentsOnline. All stories, including this one by Robaire Beckwith, were originally published at Conditional Publications.

Knowing what growing up with Tourette Syndrome was like, and remembering the difficulties with understanding the problems experienced as a child and what caused them, led me to finding ways I could help children with TS and other “special” needs caused by neurodevelopmental disorders. There was almost no useful advice or support available and I don’t believe things have moved on much now that I am an adult.

I wanted to find a way I could make a difference and be able to improve awareness, influence professional attitudes, improve diagnosis and subsequent provision and treatment. I determined that the best way to do this was to become a doctor myself and specialize in developmental pediatrics or neurology.

I could not only become directly involved in the diagnosis and treatment of TS but also become involved in clinical research. Having TS myself would, I hoped, give me a unique insight and ensure I had some idea of the issues that children with TS and their parents face. I hoped my own “disability” would allow me to connect better with and relate to others who are similarly affected.

After gaining my first degree in biological sciences, I taught for several years in a “special school” as a teaching assistant but eventually found this frustrating, as, although I was helping with educational aspects, I became very aware of the profound lack of understanding about Tourette Syndrome among both health and educational professionals. The misconceptions of the medical profession and very poor advice given to parents and their children was something I found truly astounding and worrying. Continue reading

Links: Overcoming TS, bullying, coprolalia, parenting and more

Over the past few days, we’ve noticed quite a few excellent links relating to Tourette Syndrome during our travels on the Internet. We thought we’d share them with you to aid you in your quest of helping a friend or loved one in your life with TS and/or an associated neurological disorder. We hope you find these useful!

Video: Bullying didn’t hold me back

Video: Tourette, coprolalia and me

From England: New hope for TS patients worldwide

From New Jersey: Awareness and advocacy walk at Ramapo College, April 14

Help kids with Tourette receive education and support programs

California girl sings, doesn’t let TS get in her way

Video: “Ask Ruth” segment answers questions about Tourette

 

“Tourette Syndrome: Coping With Difference” — Reflection

The following is the 6th and final part of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.

Read part 1 here.
Read part 2 here.
Read part 3 here.
Read part 4 here.
Read part 5 here.

Many times throughout this inquiry, I wanted to give up. I was overcome with emotion because we’re still new to Jacob’s diagnosis. Doing research is one thing; inquiring is another. I could research all day and crank out a paper full of facts about what Tourette Syndrome is.

If I had chosen to write about the specifics of having TS, I could have easily typed a hundred pages of facts. My paper would have definitely been so much easier to write, but it wouldn’t have made me see myself as the person I want to be.

This inquiry did something for me that nothing in my entire college education has done so far; this inquiry made me realize how I passionate I truly am about becoming a special education teacher. I wanted so badly to create an inquiry that would be able to explore the sides of Tourette Syndrome that I was the most unfamiliar with.

I, with all honesty, know that I did not meet my goal of finding that “magical” answer. There is no one answer to teaching Jacob to cope. I searched through several perspectives and not even my interviews proved to be “golden keys”. What I learned is that those things do not exist. Continue reading

Without support, our son wouldn’t be getting freed from his tics

I was overwhelmed by the well-wishes and show of support from fellow parents of kids with TS who wrote on my last blog. In addition, the insight from those before us who have navigated this winding road of psychiatric care and insurance bureaucracy is a great comfort because we need to be aware of the few laws that work in our favor.

Our son is exactly two months into his treatment now and, with the exception of a $750 lab bill, we are still wondering what our financial obligation will be.   We travel to see him every other weekend, rent a car to get  from the airport to the hospital and sleep at a hotel.   None of these costs of course, are covered by insurance, but they are necessary for our son’s treatment, his belief that we haven’t abandoned him and our own education.

The hospital sponsors a parent lecture series to make sure we’re educated on certain topics  before we bring him home.  

And this is the part that’s still seems so surreal.   Our son is coming home to us a well child.  If I followed this line by a trillion smiley face emoticons, it wouldn’t come close to conveying the joy and lightness we feel at this revelation.

He is virtually free of any visible tics or compulsions, and we wouldn’t believe it if we hadn’t seen it with our own two eyes.   He still struggles with a few vocal ritualizations, but these are currently the focus of his work with  his doctors and counselors, and he will be sleeping in the room down the hall from me within the next month.

And while we still have no idea what we owe the hospital that has given our son back his life, from where we stand right here and now,  it almost doesn’t matter.

 What matters to me now, though, is that better treatment is available to more kids right now, right where they are. Continue reading

Book provides help for parents raising a son with TS

I want to tell you of a book I finished reading not too long ago that can give you some good perspective on raising a son with Tourette Syndrome. It’s titled “Memoirs of a Father,” by Michael Fekete. It’s the author’s story of raising a boy with TS and is available from the Tourette Syndrome Foundation of Canada. At the end of the book, the author provides what I think are great “rules of parents conduct” for raising children afflicted with the neurological disorder.