Book Review No. 2: “Welcome To Biscuit Land”

BiscuitlandAs I mentioned in a previous post, I had the opportunity review a book by the very talented and funny Jessica Thom called “Welcome to Biscuit Land.”

Not unlike the other Tourette book I had the honor of reviewing, “Welcome to Biscuitland” left me feeling both grateful and protective all at once — grateful for brave women like Thom who aren’t afraid to fearlessly write about their experiences with severe TS, but also protective of parents who are new to the confusing syndrome of this disorder.

As I mentioned in my last post, there are some people with Tourette who absolutely jerk, shake, curse and wind up in wheelchairs for their own personal safety when their tics become unmanageable. But there is a much higher percentage of folk who live with medium to mild TS (like my own child) and simply do not fit the stereotype of the shrieking, flailing ticker who illicit stares and insults from the public as ruthlessly as nonsense talk over Kate Middleton’s post-pregnancy belly.

The above disclaimers stated, the absolute facts are that I adored this book — not just for Thom’s honesty, but for her humor. Thom has a way of writing that is so outrageously funny, she immediately put me at ease about her condition. It’s clear from the very beginning of her book — written in the style of a one-year diary — that there is a big difference between Thom inviting us to laugh about the more humorous aspects of her Tourette and having ignorant people laugh at her. Continue reading

Hope floats while summer rolls on

So far, it’s been a pretty good summer. I’ve been off-and-on sick for the past few months but finally got on some antibiotics and am starting to feel better.

Jacob is doing well. His tics are about the same. His cousins have been here for the past few weeks, and his cousin told me that Jacob kept waking him up with “beat boxing.”

The next morning, I went in and heard what he was talking about … Jacob’s vocal tics. They are definitely more noticeable lately, but I haven’t seen any new tics. That’s probably more from the fact he’s been keeping busy with his cousins. They’re leaving next weekend, so I’m sure his tics will go into overdrive, and they are always worse when he’s sad — which unfortunately happens when his cousins go home.

I got a job offer the other day to be a PPCD (Preschool Program for Children With Disabilities) teacher, and of course I accepted. I’m excited but nervous.

Overall, I’m always going to be Jacob’s advocate, and I feel bad that I haven’t kept up with the Embracing Difference page on Facebook as much as I was when I first started. Life got busy, but we still haven’t lost hope that one day TS will be met with more acceptance.

Above all else, we hope that children with TS will be more accepting of the way God created them and live life in such a way that it doesn’t matter how the world views them. It only matters how much they see their worth in the whole scheme of things.

I know that Jacob is meant to do wonderful things in this world, and I will keep pushing him to see his potential. He starts middle school in one month!

Book Review No. 1: “Ticked”

The good people of IPG Publishing recently sent me two books on Tourette Syndrome to review. One was “Ticked: A Medical Miracle, a Friendship, and the Weird World Of Tourette Syndrome.”

The writer, James A. Fussell, talks in candid first person Technicolor about his experiences growing up with Tourette Syndrome. While this disorder didn’t keep him from becoming an accomplished journalist for the Kansas City Star, it was by no means a walk in the park for him either. His tics were severe, at times completely debilitating.

A lovely summary was written up in Good Reads:

When Jeff Matovic burst into the office of Dr. Robert Maciunas, he had very few options left. Matovic had suffered for years from Tourette Syndrome, his full-body spasms and outbursts getting progressively worse, to the point that he saw suicide as a viable option. Drugs, physical therapy, prayer — nothing was working. But Dr. Maciunas was a pioneer in deep brain stimulation (DBS), a new therapy that had worked to correct other brain disorders. Could it fix Matovic’s Tourette’s? All Matovic had to do was convince Dr. Maciunas that he was a perfect candidate for the procedure. That, and have several electrical leads — a “brain pacemaker” — implanted into his skull.

Author Jim Fussell is uniquely qualified to tell Matovic’s story—he suffers from Tourette Syndrome as well. Fussell’s job as a feature writer for the Kansas City Star brought him in contact with Oprah Winfrey, who first told him about Jeff Matovic, the “Miracle Man.” As Fussell learned about Matovic’s remarkable journey, he vowed to seek him out. This is their story.

As the mother of a child with mild Tourette, where it borders on “medium” when he is stressed or just dealing with the normal ups and downs of this nutty disorder, I have very strong opinions about this fascinating memoir: Continue reading

Mimicry: The finest form of flattery

pic18456I recently got an e-mail from TSA announcing that this film would be airing on the Hallmark channel. I’d heard of it but never had the pleasure of watching it. I was hesitant about watching it because I was nervous about the effect it would have on my tics since being highly suggestive comes with the TS territory. However, at this point in my life when I’m working on starting a career myself, learning about other trail blazers like Brad Cohen is an important part of maturation.

According to IMDb, “Front of the Class” is about:

Despite suffering from Tourette’s syndrome, Brad Cohen (James Wolk) fulfills his lifelong dream of becoming a teacher in this touching Hallmark Hall of Fame production based on a true story that shines a light on this often misunderstood disorder. As Cohen grows up, he must face friends and classmates who don’t realize that he sometimes cannot control his outbursts, and a father (Treat Williams) who seems unwilling to accept his son’s condition.

Despite my concerns I was excited to watch the film. It was about someone with TS and how he had used determination and fortitude to accomplish a goal that many had thought impossible. Don’t worry, no spoilers here! While to the experienced eye of someone with TS there were a couple discrepancies, James Wolk’s portrayal of Mr. Cohen’s case of TS was amazing and looked completely unrehearsed.

While watching the “Front of the Class,” I experienced several emotions. Empathy, because I understood some of what he was going through, happiness during the good and funny parts (of course), and some stress. Even though, for the most part, I was engrossed while the film played, when the commercials came on, that’s when the tics along with built up stress occurred. I had bad vocal tics like squeaking, yelling and a sort of loud whining. The motors tics I experienced surprised me the most. I had several head shaking tics and one where (I was sitting on my bed at the time) I would fall over on my side and get back up repeatedly.

Part of having this disorder includes the brain’s ability to record observations and events and transpose parts of them into the form of a vocal and/or motor tic. That means a person can develop a tic sequence simply from observing others whether from a movie or real-time events.

This doesn’t have to limit what a person with TS watches or their life experience as a whole. Just keep in mind that if something has any sort of impact on you, it may translate into a tic later on. In this case it’s important to remember that tic cycles are temporary and even though there may be times when one has to avoid a certain situation, it doesn’t mean it’s permanent.

Touretteshero to the rescue!

BiscuitlandIPG Publishing recently sent me two book. One was “Welcome to Biscuit Land,” by Jessica Thom. This book was an honest, open and candid “diary” written from a woman who lives with severe Tourettes. I read this book in two days and was struck by two things:

  1. Jessica Thom is seriously the most funny person alive. She knows how to spin joke more than Jay Leno on a merry-go-round. I can completely understand why Stephen Fry (of Monty Python fame) included her in his television show Planet Word when it came to discussing the evolution of the curse word. Thom is one of those 10 percent of TS folk who deal with coprolalia: the inability to control obscene language.
  2. Class and kindness rises above any sort of disability.

NOTE: Folks, no one wants their child to deal with uncontrollable curse words. I would be lying if I said that I was immune to fear of my son screaming the F-word at Super King Markets or during a Spelling Bee next year.

At the same time, what Thom taught me through her book and subsequent interviews on national TV shows is that having a “disability” like extreme TS does not keep one’s true elegant soul from shining through. I, for one, would rather have a child with a keen intellect (and kind disposition) like Thom than a “neuro-typical” child who doesn’t involuntarily curse but acts like an ass-wipe.

My cussing can not be blamed on TS. I am tired and have a potty mouth at times. As Thom mentions in her book, her own father does not use her tics as an excuse for any kind of cursing. Like a true dad, he knows the difference and lets her know when she is out of line!

I personally found Thom’s book, and our subsequent back-and-forth e-mails, to be both engaging, encouraging and enlightening.

Thom’s TS does not define her.

My son’s TS, much more mild, does not define him.

And fear will not define me. And I hope not, you.

Still thinking about Camp Bernie

It has been just over a month since my family and I attended the annual NJCTS Family Retreat Weekend at Camp Bernie for the 5th time, and I am still thinking about the experience.

Every year, I look forward to catching up with folks that I only see at the retreat, participating in the support-group discussions with other parents, and enjoying the camp activities. Reconnecting with our old friends, and meeting new families, reassures my wife and me that we are not alone in the struggles (and unique joys!) of living with children affected by TS.

This year, despite my wife breaking her ankle just before the teen discussion panel (!), I left camp rejuvenated and inspired.

What I look forward to the most at Camp Bernie, however, is watching my daughters. It is one of the few places outside of our home that they can tic with little to no anxiety or embarrassment, and it provides them with a valuable opportunity to interact with others that have TS.

The welcoming environment not only makes them feel that they are an integral part of a larger community, it fosters their confidence in who they are and what they have to offer.

My younger daughter, who has been very resistant to standing on a stage, spent hours practicing with her sister to perform in front of everyone at the talent show, while my older daughter, recognizing that what she has to say is important and may help others, participated in the teen discussion panel.

Over the years, I have watched them grow to be self-assured kids who advocate for themselves and others, and their experiences at Camp Bernie have undoubtedly been an important part of this process.

The annual retreat has had a tremendously positive impact on our lives and others who attend. I look forward to participating in future years and meeting new friends, watching our old friends continue to grow, and, most importantly, taking my daughters to a very special place where they can just have fun.

Camp = fun activities, educational seminars, new friendships

For nearly a decade, children and families affected by Tourette Syndrome and its associated disorders have converged upon YMCA Camp Bernie in beautiful Hunterdon County each June for a few days of fun, learning and the realization they are not alone in their daily battles.

It’s been one month since the 9th annual Family Retreat Weekend took place, and many of the nearly 50 families who attended the event put on by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) still can’t stop talking about it – especially the kids, many of whom already have asked their parents to circle June 6-8, 2014, on their calendars for the 10th anniversary weekend.

“The weekend was wonderful. The kids did not want to leave, and neither did my husband and I,” said Anne Marie Palmeri, whose family attended the event for the first time. “I think it was a great experience for my older son. It made him feel like he was not alone. He was able to talk to other kids about having TS. It was just a great family experience, and we all agreed that we would make this a family tradition each year.”

Families had plenty of opportunity to bond while participating in many of the camps numerous activities, including a wall climbing, swimming, canoeing, volleyball, basketball, archery, arts & crafts, yoga and much more. There also was a campfire and a Talent Show led by DJ Harry Hubert – always two of the biggest hits at the Family Retreat Weekend. Continue reading

More to say about Camp Bernie

Again this year me and my two daughters packed up the van and headed out for our favorite weekend of the year. All year I wait for these three precious days of TOTAL RELAXATION. And I do mean total relaxation.

As a parent of a child with Tourette, you are always on your guard when you go out in public. You know what I mean — that nagging voice at the back of your head worrying about if your child will have a ticcing episode and how people around you will react.

No matter how hard you try not to think about it, it is always there lurking below the surface. My mamma bear instincts are always on high alert when out in public — ready to spring in to action to protect your child. There’s also that feeling you get when your child goes off with another group of kids by themselves, hoping that they will have a NORMAL kids day.  How you long for those days before diagnosis when you didn’t have this concern.

Well, if you’re sitting there reading this and are nodding your head saying, “Yes, I know what she means” and have never been to Camp Bernie, I suggest you mark your calendar right now today to attend next years camp. Circle June 6-8, 2014, in red pen, mark it with stars and start counting off the days. Continue reading

Time to re-evaluate

Thank you all for holding on and continuing to like our page on Facebook. It’s Jacob’s summer vacation, so I try not to spend a ton of time in front of the computer screen … even when it’s for a good cause.

I’m getting ready to take Jacob back to the neurologist to have him re-evaluated for ADHD and possible Sensory Processing Disorder as well. He’s got a one new tic where he places his hands close and then pulls on his fingers while he’s having his “major tic.” Other than that, we’re hearing a lot of “I’m bored!”

Meanwhile, I don’t expect Jacob to enroll in college anytime soon, and he’s not autistic, but this story still shows the power of how the positive always outweighs the negative. A medical diagnosis doesn’t equal to a “life diagnosis.”

“Approaching Tourette Syndrome” article in Chinese publication describes Camp Bernie experience

The following story was written (originally in Chinese and translated here into English) for the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) by Lichun Zhang and appeared June 28 in an all-Chinese publication online and in print:

Chinese Camp picTourette Syndrome, also known as multiple tics-coprolalia syndrome, refers to involuntary and sudden multiple tics and twitching, accompanied by the outbreak of vocal and Tourette tic disorders. Currently, Tourette Syndrome and autism incidence is almost the same, and although Tourette Syndrome has drawn mainstream attention and launched a wealth of research, Asian-Chinese groups know very little about it.

Understand Tourette Syndrome

It is understood that Tourette Syndrome pathogenesis is related to genetic factors, neurotransmitter imbalance, psychological, environmental and a variety of other factors, and may be a result of interactions between these factors during development. Onset is mainly between 2 to 15 years old, more in males than in females.

The symptoms are often intermittent, sometimes more severe and other times less severe. The symptoms increase when stressed, anxious, fatigued or lack of sleep; reduce when relaxed; and can disappear when asleep. Patients often have normal IQ. Some children have problems with attention, learning difficulties, mood disorders and other psychological problems, sometimes complicated with obsessive-compulsive disorder, attention deficit hyperactivity disorder and other disorders. First reported by the French physician Gilles de la Tourette, as early as 1885, the pathogenesis of Tourette Syndrome is not well understood due to the complexity of the disease and the limitation of research. Continue reading