Congressman LoBiondo understands need to help Tourette Syndrome community

We met with Congressman Frank LoBiondo (R-NJ2) on November 19 with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to discuss TS and the H.R. 3760 federal TS legislation. We are thrilled with how the meeting went!

Below are what my girls, Sarah and Anna, said to the Congressman.  Anna went first, then Sarah. My husband talked to the Congressman about difficulties finding doctors that specialize in TS. He also wrote the following on POPVOX, a site that helps constituents get their comments about legislation to their legislators:

Without knowing what causes Tourette we cannot cure it. Right now we have neither a cause or a cure and we need both!
 

I spoke about some of the difficulties involved with school. My son Eric is looking forward to the next time we do this, as he has decided that he would like to add his two cents also To read more about NJCTS’ visit to Congressman LoBiondo’s office and the impact of his agreeing to co-sponsor H.R. 3760, check this out. Continue reading

Enough with the misconceptions already!

Over the past few weeks, I have encountered numerous misconceptions about Tourette Syndrome, and while I’m still learning, I would like to clear a few things up:
 
  1. Please stop asking people what is “wrong” with them. Nothing is WRONG about individuals who are different. Nothing is wrong with Jacob; he is perfectly right to me.
  2. Not everyone with TS shouts out curse words. This form of TS, coprolalia, affects only about 15 percent of the TS population. Individuals with coprolalia are just like everyone else with TS, they cannot always control their tics and they get bothered by your words more than you get bothered by theirs.
  3. No matter what you do, strive to be the best.

Read more from me on my Embracing Difference Facebook page!

Change is scary, but growth is necessary

Lately, when I talk with the boy about unexpected change, I try to look to nature for a visual example. It wasn’t until the other night that I made real headway with him and had an ah-ha moment of my own. Even in nature — no, mostly in nature — change is scary! It is scary and violent and at times unpredictable.

Have you ever seen one of those up-close, super-zoomed time lapses of a seedling breaking through the soil? The ground quakes and breaks apart, the seedling pushes and shoves its way through unfamiliar territory, with only the will to transform and grow driving it.

If the will of a seed can break through the earth with only the will to grow, adapt and change — scary or not — the boy and I agree that we can, too. We are both learning as we go. We are both brand new. We are both adapting. We are two strong little seeds.

New Tourette Syndrome book: “The House at 844 1/2”

Emily has trouble with her husband Gareth. Although she is both intelligent and beautiful, she lives with an embarrassing medical condition: Emily has Tourette Syndrome. Thinking that Gareth therefore has all the power in their marriage, Emily allows him to treat her like the proverbial doormat.

Emily’s son Reid also has Tourette Syndrome. Academic problems and bullies make school a living hell. Only the support of his friends, other “weirdos” like him, makes it bearable. They plot revenge against the bullies. In a high-achieving town where many consider only an Ivy League education acceptable, Reid wonders where a place in the world exists for someone like him.

Emily accidentally enters an alternate dimension where she meets Terran. Compassionate, God-like, yet blinded by her fiery beauty, he becomes her spiritual teacher. Only someone with a life mission as important as hers, Terran says, can enter his dimension. Reid and Emily’s increasing prophetic visions lead them to healing in ways that they never expect.

All of this takes place in a new book by Elizabeth Johnson Lee called “The House at 844 1/2.” It’s available now on Amazon for $16 in paperback or $2.99 on Kindle.

Elizabeth Johnson Lee is a licensed Marriage and Family Therapist and Spiritual Counselor. First-place winner of the 1999 Jack London Writers’ Contest, she has published articles in the Bay Area Parent magazine and the Palo Alto Weekly newspaper. She lives in Palo Alto, California with her husband, two children, and their hyperactive poodle. She and her son both have Tourette Syndrome.

No such thing as cruise control with school services

I see the same story over and over again: a child who is young — like my boy (5), with a similar high-functioning diagnosis — refused for school services because his disability doesn’t yet affect him “academically” even though it clearly affects the child socially and emotionally.

The school puts their foot down with a refusal of services and in turn creates a different path for a very young and vulnerable yet capable student. This path created can make or break a student’s entire school career, especially if a student is diagnosed with ASD (autism spectrum disorder).

These children build strong associations, and if school is uncomfortable, scary, frustrating, too much, hard, unsafe and unwelcome to them — every single day — I doubt that experience will provide a steady foundation for the future.

For example, the boy was asked not to tic or stim in the classroom — before his teacher knew any better — and he still feels uncomfortable, so he tries to suppress them and that results in meltdowns. That doesn’t make learning easier, as I’m sure you can imagine.

I don’t think I could be any less shocked that the boy’s school used every last minute of the evaluation period allowable — down to the day —  to make a decision about granting him an Individualized Education Plan (IEP). And even though the appointment to cover these evaluations and the school’s decision was so rushed that I couldn’t plan child care for the boy’s little sister, I took it. Continue reading

The connection between strep throat and Tourette Syndrome

I was very sick last week, as was my daughter the week before. For us, it was all about being knocked on our butt for a few days, sniffling like crazy, dealing with a few nights of sore throat because of postnasal drip and feeling exhausted.

Stink had a sore throat on Saturday. Unlike the procedure for Pip and me which involves sleep and hot cocoa, I took Stink a day later to Urgent Care. Stink? He gets strep. Happens every time.

When I arrived, I was lucky enough to have the same (may I say very handsome) doctor on call. He immediately sat down on this rolling chair, flipped open Stink’s chart and began the following conversation: Continue reading

New book chronicles turbulent teenage years with Tourette Syndrome

My book, “The Line, the Itch and the Rabbit Hole,” chronicles my experiences with Tourette Syndrome. I had my first tic at age 7 (a sniffling annoyance, dismissed as a “bad habit”) but wasn’t diagnosed with TS until I was 23.

My symptoms dried out through my early teenage years but worsened in my late teens after I spent a number of years experimenting with drugs and alcohol. After that, TS remained a constant in my life.

I didn’t tell anyone around me about the diagnosis, not just because it’s a heavily misunderstood illness and I didn’t want to deal with any explanations, but also because I naturally like to keep myself to myself.

With the publication of “The Line, the Itch and the Rabbit Hole,” I finally have a means of relaying that information to people around me, and while I put off doing that, I would really like to communicate with fellow sufferers to learn how they dealt with the illness and the stigma attached to it.

I also suffer from Borderline Personality Disorder, have spent numerous years addicted to drugs and alcohol (sober now) and spent some of my childhood in a psychiatric hospital after an “accidental suicide attempt.” All of these things are explained in the book, available from Amazon for just a $0.99 download!

New title for my bullying book on Amazon!

A couple of months ago, I wrote here about my Facebook page called “Bullying is a Big Deal” — check it out. I wrote a book that originally went by the same title, but I had to change the name of my book because there was another with the same name. Please contact me on my Facebook page or go to Amazon.com to buy it. Thank you!

New Jersey doctors seek to better help Tourette Syndrome patients

EDITOR’S NOTE: The following story first appeared on the websites of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) and the New Brunswick Patch.

When it comes to Tourette Syndrome, pediatricians often state that families bypass them and go straight to specialists for an opinion and diagnosis. That assertion was a hot topic during NJCTS’ Patient-Centered Medical Education program presentation on November 12 for 30 pediatric and family practice resident students at the Bristol-Myers Squibb Children’s Hospital in New Brunswick.

The discussion, started by 17-year-old teen advocate and presenter Grace Hawruk and her mother, Kelly, led to a question by one of the residents that is one of the reasons why NJCTS created the Patient-Centered Medical Education program:

So as pediatricians and general practitioners, what is our role when families return to us?

Hawruk’s story about what it’s like to live with Tourette Syndrome – a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and teenagers – at school, at home and in the community took care of the answer. Continue reading