Conquering back-to-school anxiety, part 1

EDITOR’S NOTE: This is part 1 of a three-part series on back-to-school anxiety by the Tourette Syndrome Foundation of Canada. Parts 2 and 3 will be published Tuesday and Wednesday, respectively.

Fall is fast approaching, and in a few short days, it will be that time again—time to pick up the books, pack the school bag and head back to school!

For many school-aged children, it’s an exciting time—a chance to catch up with friends, swap stories about the summer, sport new outfits and show off new school supplies. It is important to remember, however, that not every child feels this way. For some kids, the prospect of returning to school is unsettling, even dreadful. Rather than feeling excitement, they feel intense fear and anxiety leading them to declare, “I hate school” or “I really, really don’t want to go to school.”

The layperson’s term for this phenomenon is “back-to-school anxiety.” Scholars of the subject call it school phobia, school avoidance or school refusal. Simply defined, these terms refer to any anxiety and fear associated with going to school that can result in a pattern of avoidance of, or refusal to attend, school. This is not to be confused with a dislike of or desire to avoid schoolwork. Quite the opposite; according to one scholar, “Those with true school refusal…are usually willing to complete school work as long as it’s done at home.”

School phobia/avoidance is no small problem. Studies suggest that it affects 2 percent to 5 percent of all school-age children, with the highest incidence occurring among children between the ages of 5 and 6 (age 6 also happens to be the average age when someone with TS first starts experiencing symptoms).

Left unaddressed, school phobia can have serious consequences. In the short-term, it can lead to poor academic performance, parental conflict and diminishing peer relationships. In the long-term, it can result in academic failure, school dropout and employment difficulties.

So, what can be done about it? Can it be curbed? Eliminated? Prevented? If so, how?

Cancer provides good perspective for dealing with Tourette Syndrome

Ladies and gentlemen, we have had two weeks of nonstop excitement from birthday parties to sleepovers to Wii time to pool dates and, lo and behold, the tics are back!

Introducing, the squeaky gulp. It is happiest when interrupting Stink’s sentences at a rate of 20 times per minute, but it will make its appearance during quiet times, reading, chewing and teeth brushing.

While it is doing its best to unnerve me – and trust me – it’s doing a great job of it – I am hanging in there. I make no apologies for having my husband read bedtime stories to my little dude, wear ear plugs when needed, or just go for a walk (or 10) when I find myself losing it.

I refer to episodes like these as ”Silver Bullet Denied”, for while I had hoped that the Intuniv would just blast these suckers away all together, alas, such is not the case. It is what is.

God, grant me the serenity to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.

And really, although I’m entitled to my pity party, I have so much to be grateful for. Just three hours earlier, my friend of 40 years asked me to visit her in the hospital. Continue reading

Serendipity: It’s a movie AND a way we should be parenting

A friend of mine once reminded me of a movie that has long been a favorite of mine,  Serendipity – starring John Cusack and Kate Beckinsale.  It’s a great movie to watch this time of year because it shows NYC in all  its holiday splendor.

Watching it again, got me to thinking about the word serendipity and what it means – the effect by which one accidentally stumbles upon something fortunate, especially while looking for something entirely unrelated.  I love what it means almost as much as I love the way it sounds.  Serendipity.  Say it and tell me you aren’t smiling.  Serendipity.

When I got pregnant with Jacob I was overcome with emotion – excitement, fear, wonder, and even sadness because my father would never know him.  But I wanted this baby so badly that even the negative emotions couldn’t ruin it for me.  I wanted my own perfect little bundle of chubbiness to love.

And while I got exactly what I asked for, I also got something I didn’t ask for – a special needs child.  For two years I carried on unaware that what the future held for me was more fear, and more uncertainty than I could have imagined. Continue reading

Video: Tourette Syndrome — the facts

EDITOR’S NOTE: This is TSParentsOnline’s 200th blog post since operations commenced on November, 7, 2011. Thank you to everyone who has helped get the blog this far!

Hi, hope you are all well. The reason I decided to make this “Tourette Syndrome: The Facts” video was to counteract negative tweets on Twitter that stem from my struggle with TS when out in public. I find that with the use of the Internet, I can still raise awareness of Tourette, so when I see misinformed tweets about TS, I try to post the video with the hash tag Tourette.

All the photos are taken by me and are made up of photos of our children, as well local sights. The video and music is put together with the help of my friend Cliff (@cliffsull on Twitter). He doesn’t have TS but is a great guy and helps raise awareness.

I have a new project going at the moment, and it is getting this video TS translated into different languages. The first language is Chinese, as I always think how difficult life must be living with TS in different countries. And in a country with a population of almost 2 billion people, I’m sure there must be a lot of folks struggling to find acceptance or understanding of our condition.

So watch this space, watch the video and look for a link to a recent documentary we made about living with late onset of tics, which includes John Davidson, Chopper, my family and lil’ old me. 🙂 Many thanks!

Oh What A Tangled (Neural) Web We Weave: A first-person account of Tourette Syndrome (part 8, a cure?)

EDITOR’S NOTE: This is the finale in a multipart series that first appeared in the March 2010 edition of the Journal of Clinical Psychology Practice and also can be found on Life’s A Twitch, a website run by Canadian psychologist Dr. B. Duncan McKinlay.

So do I want a cure for my TS? No. Besides some positives inherent to dysregulation (e.g. sometimes perseVERing and perSEVering differ only in inflection), there are the positives that come from the struggle itself. My angst has been a valuable commodity and is reflected in the passion I have for my work. It helps foster insights within my chosen field, and in many ways opens as many doors as it closes.

By their very nature my demons are forced to the forefront; they will not be denied and so are acknowledged and dealt with; something that puts me ahead in the game of life and not behind. Frankly, “curing” me of TS at this point would be the definitive invalidation of my existence.

I’ve become adept at running a lemonade stand. I never asked for nor wanted any stupid lemons, but I’ve made the best of what I was handed. For better or worse this lemonade stand is my life; I continue to expand the franchise. To suddenly cut off my supply of lemons would be cruel indeed.

Future studies of TS may benefit from consideration of any learned elements of this condition as subjectively reported. Mindfulness may also play a potential role in the treatment of TS. Clinical work can be enhanced with the use of behavioural treatments and by more fully grasping the “gestalt” experience of living with TS and associated conditions.

Tics ALWAYS return and summer ALWAYS lasts too long

Well, the moment I write “tics are gone,” they always come back. But they are still at a minimum, and I am very happy with the Intuniv. Stink is still Stink: happy and charming and sometimes a bit toooo silly. But I’ll take that over a flatlined robot.

I don’t know about you all, but I am finally hitting the wall with this summer fun nonsense. If I do one more load of dishes or fold anymore laundry, only to see it pile up again in the course of one hour, I will lose my brain.

My kids have gotten excessively argumentative and hyper. They need structure. Apparently there really can be too much of a good thing in terms of swimming, friends and hang out time. It’s time for a schedule!

As I type this, 4 kids are running through the house. I normally take them to the pool or the Y or even Grandma’s house. Today? I’m cleaning. My house looks like a giant petri dish.

In closing, I am pretty stoked that I have air condition in this weather! And while I’d kill for a house that has more shelving and a prettier kitchen, I’m pretty darn grateful for what I do have. Pandora music, some fresh coffee, health insurance and a family I love so much I could die? I’ll take it.

Oh What A Tangled (Neural) Web We Weave: A first-person account of Tourette Syndrome (part 7, medical overload)



EDITOR’S NOTE: This multipart series first appeared in the March 2010 edition of the Journal of Clinical Psychology Practice and also can be found on Life’s A Twitch, a website run by Canadian psychologist Dr. B. Duncan McKinlay.

The wretched private depths I inhabited for many years as a patient with TS, OCD and ADHD go far beyond any diagnostic criteria. Symptoms are a moving target: having gotten used to one tic another more bothersome one takes its place — likely because the very act of becoming accustomed means one’s attention is no longer priming that tic as readily.

Symptoms sometimes wane long enough to see what a “normal” life would have been like, and how the world would interact with me differently. Then the mirage ends, also baffling, disappointing or infuriating those who based their expectations of me on a ‘good’ day.

There are many costs involved (time, effort, emotion and money): not just in the treatment of tics but also the comorbid conditions. I have rituals to prevent, Concerta to buy and structures to implement and adhere to. Associated medical costs accumulate (e.g. chiropractic care for tic-induced subluxations) as do the costs of replacing objects, people or electronic data not able to withstand tics, impulsive decisions or explosive reactions.

Sleep deprivation and painful symptoms exacerbate an already trying situation, and social costs attached to all this inner warfare are high. Even social cues I’m not too consumed to catch can be misleading, as the interactions modelled are of the type reserved for those who are different. Continue reading

Letters to Congress about Tourette Syndrome bill ARE read

Hi everyone, I just wanted to share a couple of little notes that show how important it is to support H.R. 3760, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011. I posted the following short letter to the POPVOX website on August 13:

Dear Rep. Frank LoBiondo:

I support H.R. 3760: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011 because I have three children with Tourette Syndrome. Their ages are 13, 12, and 9. My children face many obstacles every day because of their Tourette Syndrome. We are constantly making modifications to their 504 plans in school and seeking out the best medical treatments. The New Jersey Center for Tourette Syndrome has been a huge help but there is still an incredible need for continued research and education.

New Jersey’s 2nd district

The very next day, the following message appeared underneath it on POPVOX:

This letter was delivered to Rep. Frank LoBiondo [R, NJ-2] on 08/14/12.

The same day I posted my note, another Tourette Syndrome mother from New Jersey’s 2nd district also posted something to Congressman LoBiondo. Like mine, her letter was received by the Congressman the very next day. Isn’t that wonderful? Here’s what she had to say:

My 10-year-old daughter has TS, and there is nothing I or the medical community can do for her or anyone else who suffers because of the lack of research available. It’s heartbreaking as a parent that there is nothing I can say or do to make it better.
New Jersey’s 2nd district 

See? Your letters to Congress ARE heard, and our representatives ARE interested in hearing what we have to say about Tourette Syndrome. The more letters we send in, the more likely they are to co-sponsor this bill and get it sent into the House of Representatives for a vote. Log on to POPVOX today and share your opinion!

Oh What A Tangled (Neural) Web We Weave: A first-person account of Tourette Syndrome (part 6, treatment experience)

EDITOR’S NOTE: This multipart series first appeared in the March 2010 edition of the Journal of Clinical Psychology Practice and also can be found on Life’s A Twitch, a website run by Canadian psychologist Dr. B. Duncan McKinlay.

Deep breathing techniques are mobile, inconspicuous and decrease my ticcing through stress reduction. A slow, mindful and deep intake of air can smother (or at least partially mute) a swelling premonitory urge. I imagine the breath enveloping and drawing that urge from my body as I exhale.

By the completion of the out-breath, vestiges of the urge have re-kindled and I find myself back on the precipice. Brief refractory period or not, the exercise still bought me time enough to again smother the flames with my next in-breath. In this way, simple breathing techniques also serve as exposure and response prevention (ERP) exercises, further severing the incidental associations bonding me to my tics.

Exposure exercises can be taken further into the realm of mindfulness training. I spend 45 minutes motionless, aware and present of each passing moment, meditating on body sensations. I note a premonitory urge, and watch it with detached interest. Squirming and twisting within, it tempts me to complete the pattern. To lull me into automaticity. I leave all thinking behind to just be, no longer tied to what my brain tells me must occur next. My attention wanders, and before long I return to note the urge has vanished. A half-smile spreads across my face.

Anything to shore up my flagging frontal lobes is likely a good plan in the battle to contain tics, as Bradley Peterson’s work so eloquently suggested. For a few years now I have taken large daily doses of Omega-3 and wonder if this has helped. Certainly it has not had any direct impact on tic levels, but I suspect it may have moderated my ability to successfully utilize behavioural treatments. Continue reading

Which neurologist should I choose for my son?

Hi, my son started having tics earlier this year. Tourette Syndrome runs in my family, so we are 99 percent sure my son has it, too. My husband and I are trying to figure out which neurologists are worth the wait. I got a list the other day, and our pediatrician-recommended one that is not on it. Can anyone share positive experiences they have had? We are new to this and would appreciate any insight we can get. Thank you!