The libel of labels

From the moment we are born, there are labels. Good baby. Easy baby. Difficult baby. Fussy baby.

It seems we are destined to a life of words meant to define us — if we let them. In my life, I’ve struggled with labels. Ugly. Fat. Uncoordinated. Stubborn. I admit that some of these labels I inflicted upon myself (guess which ones), but others were given to me either directly (my nickname in high school was Clum-bo – as in clumsy), or indirectly.

The bad thing about labels is that once they are spoken, whether true or not, they are hard to shake. They crawl into our minds and make a home. Sometimes they stay in the attic until dusted off by some trigger, and sometimes we wear them so blatantly, others begin to accept them as truth as much as we do.

Society does a damn good job of forcing labels upon us in the guise of advertising. And because the ads are so glossy and perfect, we gladly step into the trap.

My son has to deal with labels that have the potential to destroy his self-worth. Weirdo. Freak. Loser. These labels could do damage if he didn’t have such a strong sense of who he is, but he does.

Tourette Syndrome makes him stand out, but not in the way you might think. Yes, he tics. Yes, he can look different. But his differences go far deeper than that.

He is tolerant and accepting. Jacob makes a concerted effort not to label others. He knows how one label can ruin someone. Jacob is kind. He considers the fact that what you see isn’t always what’s real.

I wonder what would happen if we simply saw one another as beings who are flawed as a result of circumstance. All of us. And in accepting this find a truth free of labels. We are all light and love at our core. One. The same. Unified. And that is beautiful. Maybe if we operate from that perspective the world will be a kinder place.

Kind. Compassionate. Loving. Soulful. Now those are labels I can live with.

20 facts about Tourette Syndrome you may or may not know

In honor of Tourette Syndrome Awareness month, here are 20 facts about Tourette Syndrome courtesy of the Iowa Tourette Syndrome Association group:

  1. One in 100 children have some form of Tourette Syndrome. That is the same amount as children with autism.
  2. Less than 10 percent of people with TS swear, which is known as coprolalia.
  3. TS is an inherited neurological disorder named after Gilles De La Tourette.
  4. TS causes people to have tics. Tics are sudden twitches, movements or sounds that they do repeatedly. People with TS cannot stop these tics.
  5. No two people with TS will have the same tics. Each person with TS is as different as every snowflake.
  6. More than 79 percent of people with TS also have co-morbid conditions — ADD, ADHD, OCD, anxiety disorders, sensory processing disorder (SPD) and dysgraphia, just to name a few.
  7. There are two types of tics, motor and vocal. Motor tics are movements of the body, such as blinking, shrugging of shoulders, limb movements, etc. Vocal tics are sounds people make, such as barking, sniffing, throat clearning, random words, etc.
  8. Tics can be simple or complex. Simple tics involve just a few body parts, such as eye blinking or sniffing. Complex tics involve several parts of the body and can have a set pattern, such as bobbing head while jerking arms, then finishing with a jump.
  9. Tics wax and wane and can increase and decrease and change throughout a person’s lifetime. Tics a person has an a young child could be different and at a different severity than when they are a teenager.
  10. Tics usually start around the age of 5 to 10 years old. The first tics are usually motor tics. Continue reading

Sometimes ignorance has nothing to do with bliss

My husband recently shared with me a conversation that he had with a person who posted a comment on our first Tourette’s interview. More often than not, the comments are positive and supportive. However, there will always be ignorant people who just don’t get it despite our best efforts to educate others and encourage an attitude of acceptance.

This particular viewer questioned our decision to call Jacob “normal” and proved to us that some people just aren’t worth engaging.

*Ignoramus: Why call him normal if he has a disorder?

warner13: I call my son Jacob normal because he IS normal. Yes, he has Tourette’s, but that does not define him. A lot of us have problems. Tourette’s is his. What is yours? I think it’s important to recognize and appreciate that we are all different, and it’s these differences that make us who we are as a society and culture. Hate and intolerance are things we learn as adults so we have a lot to learn from our children.

Ignoramus: My problems are unimportant. I find it strange that you would consider him normal when his disorder keeps him from being just that. We’re all a little different in our own ways, and I don’t think that anyone is normal. I have nothing against your son and I find it extremely offensive that you would associate my comment with hate and intolerance. Continue reading

No summer camp for kids with TS … unless you have an “aid”

I called a camp for summer. I was thinking about enrolling Stink and Pip in musical theatre. I mentioned that Stink has Tourette Syndrome. Their response was that it’s fine — if he comes with an aid.

“An aid? He doesn’t even have an IEP, though,” I balked. “I just told you about his diagnosis so you wouldn’t freak out about a few tics during rehearsal.” Their response, “It’s fine! Really! As long as none of those behaviors that come with TS accompany your camper.”

Um… Huh. Head scratch head scratch WHAT????

I get it on some levels. They don’t have time to accomodate special needs kids who don’t come with special needs support. On another level, though, it’s frustrating. I lose either way.

If I don’t say he has TS, they’re going to wonder why he’s occasionally coughing or churping during “How Do You Solve a Problem Like Maria?” or adding individual neck rolls to “Doe a Deer.”

If I inform them of his condition, though, and he does something very Stink like – very sneaky and appropriate for any average NT 9 year old  – he’s automatically singled out as “The Tourettes Kid.”

Forget that racket! I spoke to my hubby and we’re enrolling our kids in the YMCA this summer. I don’t have the energy for this crap. Once he gets his tics dialed and we’re off this study, I’ll go back to fighting …

For now, I want to enjoy my summer, tics and all.

Tourette Syndrome Awareness Month: One for the ticcer

This post is for my son, Jacob, who happens to have Tourette Syndrome, and he happens to be one of my greatest teachers. May 15-June 15 is National Tourette Syndrome Awareness Month. Pass this blog along to one person and help us create a chain of awareness and compassion.

Things happen for a reason. Even the “bad” things. We just have to be willing to search for meaning in the chaos. It’s there.

When Jacob began to show signs of being “different,” I panicked. None of the books that were on my shelves told me what to do. The books were meant for the mainstream mom, the mom whose kid tended, more often than not, to follow the “rules” of what it means to be an infant, toddler, preschooler, etc.

Jacob was never that kid. Ever. Some of the unexpected was easier to embrace then others. He walked before he was 1 year old. He was reading by age 3 1/2. But by age 5 some of the things I wrote off as eccentricities that I was certain only accompanied genius, started to take a turn more toward the bizarre. Continue reading

If you haven’t signed the Tourette Syndrome petition … DO IT NOW!

There are two ways you can help your child be amazing despite a few tics and twitches (or even major ones):

  1. Concentrate on their gifts, not their weaknesses! Be funny! Laugh! Fake it til you make it! (Lots of exclamations here! It really works!)
  2. Sign this petition to get more education and research out there to understand Tourette Syndrome. This will also help educate the public. Did you know that 1 out of 100 people are affected by TS? That’s a lot. Moms and Dads reading this blog, you have to know that you are not alone.

In closing, I’m off to UCLA today for our weekly drug study check-up. I’m quite certain that this will be the one hour in an entire week where my kid isn’t ticking 40 times a minute. Why will he not tic for the famous Dr. McCracken? Because life seems to work out like that sometimes, which is fine — one more thing to laugh about later. If not, I’ll cry. And really, who needs that? Isn’t it so much better to not take ourselves so seriously?

PS: Sign that petition! Please! (I’ll even run a small contest. I’ll pick one name from the list of people who leave a comment here saying they’ve signed the petition. YOU, dear winner, will get a personally mailed note from me with a trinket from UCLA. Go go go!)

Letters to the U.S. Senate about Tourette Syndrome bill ARE read

Hi everyone, I just wanted to share a little note that shows how important it is to support S. 2321, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011. I posted the following short letter to the POPVOX website on May 14:

Dear Sen. Frank Lautenberg:

I support S. 2321 (“A bill to amend the Public Health Service Act to provide for the expansion, intensification,”) because…we are seeing more children diagnosised with Tourette Syndrome. As a school nurse and a parent of an adult child with TS, it is important to educate people about TS and continue the research involved.

AnnD
New Jersey’s 5th District 

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

This letter was delivered to Sen. Frank Lautenberg [D, NJ] on 5/8/12.

See? Your letters to the U.S. Senate ARE heard, and our senators 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 for a vote in the Senate. Log on to POPVOX today and share your opinion!

May 15-June 15 is Tourette Syndrome Awareness Month

Please join TSParentsOnline, the New Jersey Center for Tourette Syndrome, the Tourette Syndrome Association and the hundreds of thousands of Americans with TS in celebrating Tourette Syndrome Awareness Month, May 15 to June 15.

Tourette Syndrome is a misdiagnosed, misunderstood neurological disorder that affects 1 in 100 people, especially teenagers. Marked by involuntary body movements and vocal sounds called tics, Tourette Syndrome affects more than 200,000 American families. Also affecting those families are the many associated conditions such as OCD, ADD, ADHD and anxiety.

So take a moment today, or at any time during this month, to show your support for those who have Tourette. There are scores of different ways to do that. Here are a few:

  • Leave a comment on one of these blog entries. The people that write them would love to talk with you about Tourette Syndrome.
  • Head to the New Jersey Center for Tourette Syndrome website and check out the myriad programs and services offered for those with TS — not just in New Jersey, but around the United States and world, too.
  • Go to POPVOX and check out the pending TS legislations — H.R. 3760 and S. 2321— and show your support for them by leaving a comment, which will be sent directly to your U.S. Congressman.
  • Sign this very important petition, which if it reaches 1,000 signatures will be passed on to the Congressmen and Senators debating the two Tourette Syndrome bills.
  • Head to the Definite Possibilities website, started by a teen with TS, and buy a Tourette Syndrome pin for just $6.
  • Want to take part in this blog personally? Send an e-mail to parents@njcts.org and ask to be a blog contributor.
  • Head over to our Facebook page and give us a “like.” Or, wander on over to our Twitter page and “follow” us.
  • Lastly, leave a comment on THIS blog entry and tell us about how Tourette Syndrome has impacted your life. We would love to hear your story.

Making a difference in people’s lives is better than getting thank-you’s

Our daughter, Tess, recently spoke at a “Celebrate Uniqueness” Day in South Brunswick, and she just received a PILE of thank-you cards with sentiments such as:

“I didn’t realize people with these type of disabilities suffered a lot from other people who did not understand about it.”

“After watching ‘Head of the Class,’ I learned a lot about Tourette Syndrome, but you went more in-depth with the facts.”

“My cousin has Tourette, and I could never understand him, but after your presentation I understand how he feels.”

“I learned a lot about Tourette Syndrome! I enjoy writing fantasies as well! You really inspired me to become a better writer. Maybe I’ll write a book one day and send it to a publisher!”

Wow! Tess was just blown away and so proud! She really felt like she made a difference in people’s lives that day!