New Jersey 7th-graders learn a lot from Youth Advocate Presentation

My daughters Sarah and Anna did a New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Presentation for more than 150 7th-graders last week at Galloway Township Middle School, and to put it bluntly…they killed it.

The presentation went great.  The audience really learned something and thought this was a great presentation to talk about. The kids were really into it and asked a lot of questions.  The Vice Principal, teachers and guidance counselor loved it. They said they want the girls to come back next year for the incoming 7th grade. Here are some pictures:

52 Weeks of TS: Week 46

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 6 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I’m tired!! I have to say, I think this has been one of the longest, most exhausting weeks that I’ve had in a while. I had a freelance job doing hair and makeup for a high school musical, which I do about 5 times a year, but this one was different. I usually design the show three weeks in advance, but I missed two weeks. I ended up designing the show on Monday, and we opened on Wednesday. This just made for a very stressful week, not anxiety, but a lot of stress.

Just like anxiety, stress triggers my tics, so it’s been a very ticcy week. I feel as if my brain has been bouncing around inside my skull all week. My neck tic has been bad all week, and I’ve been taking aspirin for the constant headache that does not seem to go away.

Usually, I try not to suppress my tics in my everyday life, but while I’m working in the high school all bets are off. I just feel as if I have to suppress them.

I guess it has to do with my own high school experience. There was always constant mocking and my fellow students were always making fun of me. Once I walk back into a school, it tends to bring me back to that time and place. It’s a cruel world we live in. I try not to suppress my tics in many adult situations, but when you’re dealing with uneducated ignorance and immaturity of high school kids, it can be hard to explain. How do you teach someone something who thinks that they know everything?

A person with Tourette Syndrome has to have thick skin. It’s not something we are born with, but we have to grow it. I thought about this a lot this week, and I’ve realized that we have been supplied the greatest weapon for our fight to educate — our mouth. The more we open our mouths, the thicker our skin becomes and the stronger we become, but it can be a hard thing to do.

When we are kids, we are scared, nervous and possibly beaten down by ignorance. It can take a lot for those shy kids to battle their own fears and demons, to turn around and speak about the very thing that has brought them down. Look at me. It took me about 15 years to start my battle against ignorance, and I still deal with fear. Despite the fear, I still try to fight the fight and continue to educate people.

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4 things someone with Tourette wants you to know

EDITOR’S NOTE: This blog entry was originally posted by Brittany Hays to ThoughtCatalog.com.

I’m sure at some point in our lives we have all come into contact with someone who has Tourette Syndrome. For those of you who haven’t, well, you have now. I have Tourette. I was diagnosed around age 9 in the fourth grade. Talk about trying to fit in. I never did ‘fit’ in, but looking back I’m glad that I didn’t.

To me, being able to live your life without the worry of upsetting a specific group of friends makes more sense, and quite frankly involves much less drama. I hate stereotypes, mainly because they give off false information that aggravates the person or group that you are stereotyping.

One stereotype that I get put into for having Tourette is that I cuss and say swear words. I have never done that. Tourette isn’t about cussing. In fact only 10 percent of people with Tourette actually cuss involuntarily (it’s called coprolalia):

1. If Tourette’s was only about swearing, I think I might actually enjoy it more. Getting to say whatever is on your mind simply because you cannot help it seems awesome, right? Well, it’s not. Try applying for a job. Who is going to want to hire someone who says “f— you” every two minutes? Not many. It’s not fun or funny. It’s humiliating. Tourette’s is about acknowledging society’s ignorance, and accepting that people are people. Now, I am not saying that I don’t ever catch myself stereotyping or judging people because I do. I mess up, and act impulsively, just like you because…well….I’m human also.

2. Have you ever been told to stop sneezing? Probably not, because most people know that you cannot control it. Imagine getting asked that when you go to order food at a restaurant because you are constantly sniffing, or are shopping in the local mall and you smack your lips all the time. It gets frustrating, but Tourette is about realizing people question everything, and that’s okay because it’s human nature. Honestly, if people didn’t question what I was doing, then I would get worried. It shows me that it’s human nature to be curious. By asking what I am doing, it lets them learn something new, and hopefully they can pass it along to others.

3. To me, Tourette is about learning to laugh at yourself and acknowledging that doing so is acceptable. If you can’t laugh at yourself, then people are going to assume that your Tourette is a weakness for you. Yes, at times I would enjoy a little break, but in the end I am a stronger, more intelligent person because of my ability to embrace what would be considered a weakness.

4. My Tourette has allowed me to appreciate differences in people. It’s taught me to not only be more accepting of myself, but also of others. You never know what anyone is going through until you have been in their shoes. Having Tourette has given me a way to see the world in different ways. I aspire to learn about others, so that I can learn about myself. Aren’t we all connected? Don’t we all deserve dignity and respect?

You see, I don’t want sympathy from people, or to hear, I’m sorry, that must suck. Yes, at times it does suck but you know what? I am alive. I have a house, and wonderful parents who have provided me with a life of happiness, so if the worst of what I must go through is to have this disorder which in turn has only made me a stronger individual, then I am grateful. I am grateful that I do not have to wake up in a hospital bed, or out on the streets. I’ve been blessed, even if that blessing seems hidden at times.

Embrace your differences. If each of us were the same, this world would be dull and boring. Be curious without being cruel.

What’s A Tic? Part 2 — Tic Classifications

What Are Tics

There are different classifications for tics, motor vs. vocal (Do you do it with you muscles or with your voice?) and simple vs. complex (How many muscles groups are involved in the movement?) As I said in part 1 of this 3-part series, there are all different kinds of tics, so many that there isn’t a definitive list of what can be a tic and what can’t. Why? Because every person’s body and brain is different. This means the tics his brain comes up with will be different from those of his neighbor with tics.

I created this table based on information from Mayo ClinicTouretteSyndrome.net, the National Institute of Neurological Disorders and StrokeTSA-USA (one of the leading support groups for individuals with Tourettes in the United States), and my own personal experience:

Common Tics

The tics listed here are some of the more common tics found in people with Tourette. My first tic was blinking, which was then followed by throat clearing, Squeaking, and my lip touching tic. My tics showed up as many tics do. Rapid, repetitive blinking is seems to be considered the most common first tic that shows up in children with Tourette Syndrome or tic disorders.

There are more extreme versions of tics that can be found in more severe cases, however. Probably the most popular one is Coprolalia, or the infamous swearing tic, where individuals who suffer from this particular tic can blurt out socially and culturally inappropriate words and phrases. There are a few things to know about Coprolalia, however:

  1. Coprolalia is found in only 10% of people with Tourettes, according to Live Science’s article, “Why Does Tourette’s Make People Curse Uncontrollably?” (I’ve heard 5%-15% from other sources as well.)
  2. Live Science also says that Coprolalia is said to be caused by some form of neurological damage, although we’re not sure why yet. It can also be found in individuals with
  3. The individuals who do suffer from this disorder don’t do it for attention or fun. In fact, it can be highly embarrassing when it does occur, and as with other tics, must be treated with care and kindness.

Because Tourette Syndrome (and tic disorders) are on a spectrum, the severity of tics will differ in individuals. My Tourettes is fairly mild so my tics are generally manageable with good diet, exercise and self-taught management techniques. There are some individuals, however, who have symptoms so severe they interfere with safety and health, such as this young man here:

Medical Miracle Tourettes

The OCD of germs

Kane has a way of remembering every detail of every situation, good or bad. This affects him within his life, day in and day out. For instance, this morning he told me he was cold so I reminded him there was a blanket on the back of his chair. He would not use it because Kenzi sneezed while using it last week. I told him I had washed it after that and it was fine; nope, not going to use it!

Yesterday, we were outside. He asked if I would please get him a drink since he was on the trampoline. He would not use the cup I brought him because a long time ago his cousin drank from it and she was sick. I explained it had been washed several times and it was fine; nope, wouldn’t use it!

He remembers if anything at one time has been “unsanitized,” according to his mind; therefore, will not use them. I try not to get aggravated because I don’t know how he feels, or what is going on inside his mind. At times I find myself having to take a deep breath! 

52 Weeks of TS: Week 45

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 7 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

After the insanity of last week, life is slowly returning to normal. I was able to go back to work on Wednesday. Yay, I could finally get out of my house and go back to work. I got ready for work and went to the subway. It was already packed. I sat there on the crowded subway contemplating taking a different train. I knew if I took this train, it was not going to be good for my anxiety. I could already feel it build, but if I took a later train, I knew I would be late for work. I sucked it up and took the train. It was a nightmare. Every stop, more people got on and more anxiety built.

This anxiety thing is a bitch. Yes, my main anxiety is pretty much gone, but I still have the chance of having an anxiety attack depending on the situation. Here it is anxiety attack on the train. I feel everything closing in on me. The tunnel vision starts, and I slowly feel the weight on my chest growing. The subtle hyperventilating starts, the sweat comes rolling down my forehead and more builds in the palm of my hands. I can feel my heart beat through every extremity of my body.

My brain starts going a million miles a minute — “Get away from me, why do you have to stand so close to me? If I get off at the next stop, will there be another train close behind? What if that one is just as crowded? What are you looking at? Do they see my tics? AAHHHHHHHH!!!!”

After about a 40-minute train ride and an anxiety attack that I am convinced cause a heart attack, I have finally reached my stop. I run up the stairs barreling through people to get to ground level and breathe the fresh air of NYC. I’m free.

What the hell? There is no winning. I want to be agoraphobic, until I get a taste of it, then I need back into civilization, but that backfires, too. I guess there is no escape, but it eventually got better throughout the week. I continued taking the train, and eventually it became just part of my day, but the thought still lingered that it could happen again and I’m not going to know when.

One day I was on the train and the woman across was putting on her make-up. I sat there and watched her apply her make-up from start to end. It got me thinking, “What are we hiding from? Is anyone actually fully comfortable with himself or herself?” We cover ourselves with makeup to be a prettier version of ourselves. We pump ourselves with medications to hide from ourselves. You know what? These shoes do not define me.

Don’t get me wrong, I’m fully guilty of this. I spend most of my life trying to suppress my tics out of fear of judgment, but why am I worried about you judging me? I will probably never see you again in my life.

OK, I guess I’m finished with that negative rant. I’m making it sound as if my week was horrible, and it was actually not half bad. One thing that I’m really excited about this week is that my doctor ordered a Chinese herbal medicine for my tics. I should be able to start taking it early next week, and I’m interested and excited to see if it works. It says it takes four to six weeks before you can see any results, but how exciting is that? I could be tic free by the end of the year. I will keep you updated.

Until next week, “I’ll tic to you later.”

What’s A Tic? Part 1 — Definitions

What Are TicsOne of the most common questions I get after telling someone I have Tourette Syndrome is, “Wait, so like, what are your tics?” I think this question is harder to answer than actually telling people I have Tourettes. It feels like I’ve just told them, “I do weird things,” and then it feels like they ask, “So what weird things do you do?”

It can be intimidating to tell people that I have vocal and physical habits that “deviate” from what’s considered normal. Unfortunately, thanks to mass media, many people assume I’m going to confess my great love of cussing (Because we’re all just dying to break out in a string of cuss words in public for fun, right?), so it surprises people often when I explain my tics. They’re not what people think.

“Well, I blink, making squeaking sounds, rub my thumb on my lip, and tense up my muscles, to name my most common ones,” I tell them. “I have more, but they only come out when I’m really stressed.” Most often, the response is a blank stare, followed by, “So those are tics? I didn’t think those could be tics. I thought you cussed a lot.”

So What is a Tic?

Having tics is the defining symptom for having Tourette Syndrome, its less severe sibling, Chronic Tic Disorders, or other disorders such as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). They can also show up after a severe injury to the brain, such as one might sustain in a bad car accident, or as a side effect from certain medications, according to NHS England.

Pretty much anything can be a tic. If your body can do it, it can be a tic. WebMD’s article, “Tic Disorders and Twitches,” defines tics as,

“…spasm-like movements of particular muscles…These short-lasting sudden movements (motor tics) or uttered sounds (vocal tics) occur suddenly during what is otherwise normal behavior. Tics are often repetitive, with numerous successive occurrences of the same action. For instance, someone with a tic might blink his eyes multiple times or twitch her nose repeatedly.”

KidsHealth.org’s article, “Tics,” defines a tic as,

“…a sudden, repetitive movement or sound that can be difficult to control.”

Healthline’s article, “Transient Tic Disorder,” describes tics as,

“A tic is an abrupt, uncontrollable movement or sound that does not relate to a person’s normal gestures.”

Self-control is very difficult with Impulse Control Disorder

There are things my son says and does that are out of his control. I only wish more people would be understanding of this, especially people that he is around almost daily. Not only is he living with Tourette Syndrome, he is also struggling with other underlying disorders, one of which is Impulse Control Disorder.

Within his impulse control, he may say things at the wrong time or make a joke at the wrong time. Inside his mind, these are totally acceptable. He may call someone a name — “stupid” or “idiot” — and not realize that it is going to hurt their feelings. He may burst out with anger saying things that are really offensive toward those he loves and later apologize because he realized his actions have hurt someone.

He has a lot of anger built up every day, and he has no idea how to deal with it other than letting it out. He has gotten so much better at releasing it through stress exercise; however, nobody is perfect. So I ask that, if anyone who is around a child like Kane hears this, or sees the rage, please understand nobody but that child knows what is going on inside.

I love my little stinker to the moon and back! 

Why one size doesn’t fit all when it comes to ADHD

There’s often a pattern when it comes to the many different treatments of ADHD. Each one shows improvement in some children, but not in all. Each treatment needs to be carefully regulated by parents and pediatricians to make sure none of the treatments overlap in a way that could be dangerous to the child. Some of these treatments target specific symptoms of ADHD, but not the others.

These precautions, in conjunction with the different forms of ADHD, mean one thing: there is no one “cure” for ADHD because there is no one expression of ADHD. Each child’s treatment will depend on all sorts of factors such as:

  • Type of ADHD
  • Health
  • Allergies
  • Learning Style
  • Other Disabilities
  • Safety at Home
  • Good Nutrition

And this list is by no means exclusive. My point is that it’s not fair for parents to be judged for not trying a new “miracle cure.” The children I’ve worked with in different schools and in tutoring generally thrive under multiple sources of assistance. Some of the management strategies may surprise you, too. Most benefit from a mix of medication, a balanced diet, and these non-medical treatment sources:

  • Exercise – In the article, “Taking Away Recess Bad for ADHD Kids, Experts Say,” Thomas Lenz, an associate pharmacy professor at Creighton University in Omaha, Nebraska,  says that exercise and ADHD medications act on the brain in very similar ways. In addition, according to NOVA’s article, “The Science of Smart: A Surprising Way To Improve Executive Function,” exercise is one of the best ways to improve executive function struggles, a symptom most children with ADHD struggle with.
  • An Organized Home – Children with ADHD often struggle to pick up basic organizational skills and habits such as having one spot for homework or knowing how to follow a basic evening routine. ADDitude Magazine’s article, “Help Your ADHD Child Organize Homework,” stresses that it’s important for parents to work with their children to develop healthy organizational skills as they grow so they’re more prepared to carry those skills into the world with them.
  • Cognitive Behavioral Therapy (CBT) – CBT is often an effective treatment for individuals with OCD, but experts are finding that it can be helpful for children with ADHD as well. U.S. News Health’s article,  “Cognitive Behavioral Therapy Can Help With ADHD,” says, “CBT for children with ADHD is aimed largely at improving their behavior through praise and rewards that motivate them to calm down enough to cope with school or other challenges.” The article states that while CBT won’t cure ADHD, it helps children learn thinking and self-management skills. If mastered, these skills can last far beyond any medication.

Different Kids, Different Needs

Parenting a child with ADHD is not an easy task by any means. It’s time consuming all the time, and it takes a lot of trial and error. A certain diet and medication that works for one child will probably not work for the next. And on top of that, children’s dosages and treatments will need to constantly change as their bodies and brains grow.

If you’re the parent of a child with ADHD, don’t let people guilt you into only one form of management for your child. No matter how much they promise you “just need this one treatment,” odds are that your child will have his or her own needs that are mixed and multifaceted. The best you can do is try, and when one treatment doesn’t work, don’t consider yourself a failure. Simply move on to the next and know that you’re doing your best. Your attempts to meet your children’s needs will encourage his or her teachers and other supporting adults to do the same, and as a team, you’re giving your kiddo the best chance he’s got. And isn’t that what every parent wants?

Do you have experience with ADHD management? What are you thoughts on the issue? What was successful for your, or what wasn’t? Please share your thoughts in the Comment Box below. And don’t forget, you can sign up for my newsletter for extra resources on neurological disorders, education, and spiritual encouragement. As always, thanks for reading!

52 Weeks of TS: Week 44

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 8 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

The cabin fever has set in. I need to leave my apartment. I need to leave my neighborhood. I want to go back to work. It’s interesting how the pages have turned. Something that seemed so simple has actually brought on more anxiety. I mean, yes, I don’t have to deal with other people, and their germs, but I am going to go crazy if I have to spend too much longer in my house.

There are little things around my apartment that are starting to drive me crazy and agitating me. As soon as the agitation starts the tics come on more, and its little things. I’ve spent the last week watching stupid TV shows and movies, and every half hour the radiator comes on with a blasting hissss that makes it almost impossible to hear the TV. Therefore, the TV volume has to go up to an almost disrespectful level.

Sitting there watching TV and watching two of my dogs just pace around the apartment — clip-clopping against the wood floor, back and forth, back and forth, and they won’t lie down. It’s driving me nuts. I’ve taken them out for walks, and I’m just starting to realize that they’re like the energizer rabbit — they just keep going. The clip-clopping and the radiator hissing is like nails on a chalkboard, and it’s causing me to tic more.

I think I’m just getting to the point of boredom. I’m finding things that agitate me because I’m so bored. There’s really only so much TV to watch before you get bored of it. I have tried to write and play video games, but the truth is I need to get out of my apartment before I go crazy. I actually need to be in the company of other human beings, even though they might have germs.

I will actually give into my OCD for an intelligent stimulating conversation with something other than my TV or my iPad. Don’t get me wrong, I could do this with my husband, but I’ve spent the past week with only him. I’d like to talk to someone else for a change.

I’m actually surprised my anxiety is not any worse than it is. I still have to say, the fish oil is doing a remarkable job. I’m officially off the Klonopin as of this week, and I cannot say that I really feel any difference. It makes me wonder what it was actually doing for me. It didn’t help with my anxiety, it was just something I put in my body twice a day that my body was probably immune to. However, that’s the thing, even when I first started taking it, I never really noticed it helping with my anxiety. I hope that the fish oil continues to help me, I kind of like the anxiety-free lifestyle.

It was somewhat hard to write this week’s entry. Even though I started 52 Weeks of TS as an educational platform for people to understand what a person with TS goes through every day and every week of their life, I have found it hard to write about myself. There are so many people without homes and electricity, I feel selfish about talk about myself.

Until next week, “I’ll tic to you later.”