NJCTS discusses Tourette Syndrome at Centenary College Abilities Day

HACKETTSTOWN — Spreading awareness of Tourette Syndrome and providing world-class resources is at the heart of the New Jersey Center for Tourette Syndrome’s (NJCTS) mission. This month, NJCTS took part in Abilities Day at Centenary College in Hackettstown.

Myself and volunteer Maddie Pucciarello discussed the programs and services of NJCTS with Centenary students, local teachers and school administrators.

Abilities Day was a wonderful opportunity for us to show students planning to become educators how education outreach provided by NJCTS can help them in their future careers to improve the lives of young students.

During the 150minute presentation, we shared information about NJCTS. Pucciarello, a graduate student in public health at Rutgers University, discussed her experience with Tourette Syndrome and how she became involved with the organization.

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. As many as 1 in 100 school-aged children show signs of TS, which is frequently accompanied by ADHD, obsessive-compulsive disorder, depression, anxiety or learning disabilities.

We are looking forward to returning to Centenary to deliver an in-service presentation for education students on the topic of Tourette Syndrome and its associated disorders.

For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350.

52 Weeks of TS: Week 42

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 10 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.

Welcome to the wonderful world of TS, a world that brings on strange and mysterious underlying disorders. Additions to our state of mind that we might never expect, this week is depression. I don’t suffer from this much, but when I do, it hits me like a brick wall. Earlier this week that brick wall hit me out of nowhere.

It was a normal day, and by 5:00 pm, I felt the brick wall of depression crumbling around me. I ask myself, “why?” I have been working so hard to try to make changes to better my life. I just released a book, that I hope will help people all over, I changed jobs to get out of the negativity and immaturity of the previous job setting, but still the depression finds its way inside me.

On this night, I sat there and watched mindless TV with my husband, but I just sat there in a funk. The whole night I was on the verge of tears, but there was no explanation for it. My husband asked me a few times why I was so crabby, in which I responded, “I’m not crabby.” I couldn’t tell him that I was depressed, and had feelings of just not wanting to be here anymore. If I had said those words, he would have just asked why I was depressed.

How do you explain to someone that you have no idea why you’re going through this, but to link it back to this TS thing I have. We finally did go to bed and he still pushed me for an answer as to why I was acting so weird. As I sat there in the darkness of our room, the tears quietly rolled down and I still said nothing was wrong. By this point, he knew something was up, but I was still unable to explain it.

It scares me sometimes, because I don’t want to scare him. Maybe it’s the OCD inside me, but all I could think of is what was he thinking, “Did he think something is wrong with our relationship?” No, that’s not it. I don’t know why I am this way. It’s somewhat funny, ironically half way through the night he showed me an article about the creativity in writers with mental illness. As we laid there, he asked me if what I was going through had anything to do with that article. I told him, “No, ironically it started before I even read the article.”

The little bout of depression lasted just a couple days, as it always does. In the midst of my depression, I did have my acupuncture appointment. The anxiety and fear built up as the appointment approached. I actually tried to come up with excuses to cancel the appointment, but sucked up my fear and went to the appointment.

The appointment started with an interview about my medical history. I filled out a form checking off all my medical history. One of the things I did check off was depression. When the acupuncturist came back in the room, and looked over my form, she started asking about everything I checked off. When she asked about the depression I told her I go through it once a year for a couple days, and before I could even finished the sentence I burst into tears.

For no reason, I was sitting there crying in front of a woman I had known for about five minutes, how embarrassing… She said not to worry about it. I told her besides the depression I was also dealing with many OCD issues and increased anxiety about being there and having acupuncture. In actuality, it was not that bad. A few light pokes from clean, unused needles and I was quite relaxed.

I have to go back next week and do the acupuncture again, I think it might be a once a week thing. We’ll see how well it works with the tics and anxiety. I did tell her that I was on a new regimen of multivitamins, fish oil, and that I felt that it was working on my anxiety. She explained that fish oil could help with anxiety. I do have to say, I really feel like the fish oil has been helping. I usually have such horrible anxiety about leaving my apartment and getting on the subway, but now it’s not that bad of an event. There is still a little anxiety, but the level has dropped dramatically.

I hate talking about going to the bathroom, but I have discussed this a few times in the past weeks. Since the event back in august at the airport, I’ve been really trying to pay attention to my bathroom behavior. I have notice I actually do tic more during and after going to the bathroom. It’s one more strange realization, but it does put me into a small tic attack.

It’s a funny thing that we can walk through life but if we’re not paying attention, we might not realize certain things about ourselves. How are we supposed to educate others about a disorder that we have, if we don’t even know ourselves? This year has been a great year, and I have learned so much about my body, and my unwelcomed guests Tourette Syndrome, OCD, anxiety disorder, etc.

I’m glad I’m learning more about myself, and am now able to educate people about what I’m going through. Before coming out of the so-called, “TS closet”, I was uneducated about what I was going through. However, through research, asking questions, educating myself, and just looking into myself, I feel like I know my body more than ever.

While I was in the “TS closet”, I spent much of my time blaming others. I have stopped blaming others now. We can’t blame the world for our problems. We are the solution. If we educate ourselves, we can educate others. I think that we all will have to deal with experiences of ignorance, and all we can do is open our mouths and try to educate. If they are unwilling to learn, that is their own ignorance. We just have to remember that we are the solution.

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

Guest blogger: Sophia and her TS

Sophia talks to Tourettes Action about her experiences of living with TS and what it means to her.

For me, Tourette’s made its appearance a little later than usual. I was 16 and had just been diagnosed with autism spectrum disorder, OCD and depression. Antidepressants were prescribed to help me manage my anxiety.

One morning, I woke up and was no longer in control of my body movements, my arms and legs were doing exactly what they wanted to, as if they were not a part of my body. I kept making noises, barking and meowing. I couldn’t stop. The inside of my body felt as if there were ants running inside me, combined with a strong burning sensation, a building tension that reduced ever so briefly, but only after a ‘tic’.

From that day, my tics became more complex and at one stage the movements were constant. I shouted things out and repeated other people’s words, phrases and actions. A constant feeling of unease, not knowing what was going to come out of my mouth until it had been said. Not only did I have to adjust to my new situation, I also had to accept the stares of onlookers, many of whom had only ever seen Tourette’s in the media.

Unfortunately, the media often has a tendency of over focusing on the ‘swearing tic’, known as coprolalia, which only affects a small number of those who have Tourette’s. “I wish I had Tourette’s so I could just swear all the time” is a phrase that I’ve heard more times than I would have liked to. Coprolalia is involuntary and certainly not something Tourette’s sufferers enjoy having, nor do they use it as an excuse to swear.

Tourette’s is more than just tics, many of us have multiple co-occurring conditions that have their own symptoms. Although Tourette’s is manifested outwardly, sometimes it is the symptoms people can’t see that cause us the most problems.

Two years passed, along with lots of hospital visits. Tourette Syndrome was mentioned throughout, but my official diagnosis was given to me at the age of 18. Now, I am studying Psychology at University. My tics change in frequency and severity, new tics emerge and old ones return. I have slowly learnt to accept my conditions and I am fortunate in that I am surrounded by wonderful people, who are incredibly supportive.

I think it is important to educate and challenge the stereotypes. To become your own advocate and to embrace what Tourette’s has taught you. To those reading this who have Tourette’s themselves:

“Keep Calm and Tic On!”

What disabilities, disorders or conditions qualify for an IEP?

The following are listed as qualifying conditions, disabilities, or disorders for an Individualized Education Plan, or IEP.  The important thing to remember for any IEP is that the condition MUST affect a child’s educational outcome.  If they are brilliant and have no problems whatsoever with learning or adapting to a classroom environment affecting the ability to learn, chances are they may not qualify.

This is a very important thing for parents to remember.  Evaluations will be done to help determine disabilities, but parents should always find out ahead of time which ones are being done, and should also do some research to make sure they are the appropriate evaluations.

The federal criteria indicates a child must be impacted in the following areas to the point where they cannot perform at grade level when given instruction at that grade level. The term the federal government gives is “adversely affected”. The following are the educational areas where a child must be adversely affected:

  • Oral Expression
  • Listening Comprehension
  • Written Expression
  • Basic Reading Skills
  • Reading Fluency Skills
  • Reading Comprehension
  • Mathematics Calculation
  • Mathematics Problem Solving

The key to determining all of these criteria is is a history of assessments showing what areas a child may have struggled in, as well as a guarantee of appropriate professional instruction by an educator.  Once again, educational outcome must be affected!

The following are disabilities that can qualify a child for an IEP as long as they are adversely affected educationally:

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Why I care about special education

I wish I could answer that question with an easy simple sentence, but I can’t.  Before my son was diagnosed with Tourette’s and all it’s friends, I can honestly say I didn’t give too much thought to special needs children.  It just wasn’t in my limited radar.  They were there, and I would see them sometimes, but it wasn’t a major part of my world.  And then a funny thing happened.  It became my world.

My family became very different then.  Every moment, every action, I saw the label.  I saw my son as different, as “not normal”.  I was in denial for a long time.  Not because of him, but because my mind, my heart, it couldn’t accept what was right before my eyes.

Over time, this changed.  My son’s disabilities were with me every waking moment.  I tried to hide from it, to run away from it, but they were there, saying “Help me Daddy”.  And I’ve tried.  For the longest time I thought if I just treated him like every other normal child, maybe things would change.  But they didn’t.  I had to take a strong look at myself before I could accept him for who he was.  I had to, and still have to, realize that it doesn’t matter what others think.  It doesn’t matter, at all.  Let them judge, let them stare.  It’s reality.

First and foremost, I am a husband and a father.  My family isn’t the perfect Norman Rockwell family that so many dream of.  I know I did for a long time, but it’s just not in the cards.  But what I have is something better.  I have something real.  Something so crazy and imperfect that it makes the most sense in the world.  I get to see something some can never see.  I see human emotion in it’s pure, truest form.

Love, anger, sadness, happiness, jealousy, hope.  It’s all there.   My son has the ability to display all of these.  But it’s more than emotions.  It’s like they are colors.  Beautiful, radiant colors, that shine the brightest in his soul.

Conversations I had with people in the past used to consist of my latest TV show craze, whether it was X-Files, Lost, or Game of Thrones. I would talk about music, some politics, but for the most part I was a very self-centered person. My world was MY world and I felt people were crazy for not liking what I liked. Then a little thing became a big thing, and before I knew it, I was fully immersed in a cause. It didn’t happen overnight. It built up for a long time, and I didn’t even realize it.

When my son started having numerous problems at his old school, I figured he was just a misfit of sorts and he liked causing trouble. But it continued, and I knew something was off, but I didn’t know what. Eventually, I found out. He had Tourette’s Syndrome. And ADHD. And Sensory Processing Disorder. And OCD. And Anxiety. And Depression. He wasn’t even in double digits yet, and he had all of this to look forward to. I didn’t have the slightest clue how to help him, and I’ll be honest, sometimes I still don’t.

I don’t expect perfection. Let’s get that on the table right now. I accept mistakes, if they are made with the right intentions. But when the “old school” denied my son services that should have been his by federal law, I was pissed off. When I fully realized the scope of it all, I was well beyond pissed off. So I researched everything. Schools. The DOE. The Government. Common Core. Rodel. Smarter Balanced Assessments. The Charter School Network. What I found was a clear path, visible to those who follow the steps.

It’s the oldest game in the world. Survival of the fittest. Cavemen did it, and those in power do it now. They don’t want to relinquish their power and they will hold onto it as long as they can. Those who get in their way are pushed aside. But something new and bizarre is happening in the power landscape. The Power People are getting together and banding together. They are forcing their will on the people through coercion and specific techniques. And it all begins with education.

We think we know what’s going on, but there are depths and levels of which most people don’t have a clue. It’s a game of chess, and their pieces have been placed in a potential checkmate position for a long time.

My 17-year-old son needs help

HELP!!! My 17-year-old son had Tourette Syndrome onset about a year ago and hasn’t been “diagnosed”. He is miserable and confused and has stopped going to school. He has isolated himself socially and has just given up. He will not express gimself to doctors for the correct diagnosis. Can you guys show him some love????

Please, he is a great guy who has tranformed before my eyes. He feels alone and trapped and will not talk about it at all …. and me and his sister are the only ones who have encountered his tics. Thanks!

52 Weeks of TS: Week 36

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 35 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Well, I’m fully back into my New York state of mind. My evil neighbor (anxiety) won’t leave me alone, and my tics are crazy. My neck and back are in a lot of pain this week, and I’d love to get a massage if it wasn’t for the fact of anxiety’s roommate (OCD). Maybe I should look into investing in a massage chair, and then I would be able to get a massage, and not worry about having some stranger touching me.

This week has been a bit crazy with my tics. With all the anxiety, I feel as if my tics are coming on stronger and more than normal. With my face touching/nose tapping tic, I actually gave myself a bloody nose. I hit myself so hard it just started bleeding. At first I thought I might have broken my nose, but it stop about five minutes later.

It really sucks, I keep on injuring myself due to some tic, whether it’s bashing my elbow into my side, flinging my head around like a cocktail shaker, or bashing my face. It so frustrating and I wish it would stop. I keep on researching and reading different studies on TS, and so many of them say that a vast amount of people with TS grow out of their tics in adulthood. Why am I in that lower percentage?

I know this week, I might be coming off a little dark, but I have been a bit depressed and I don’t know why. Everything has been going well, I just think I have too much on plate. There is so much work stuff, TSA things, and not to mention I still have a houseguest sleeping on my sofa.

As I have said before, this houseguest is a close friend, but my OCD’s are going crazy because of all of her stuff lying around. It’s not that she a messy individual, it’s just that my home is not the way I like it, the organized way I need it. I only have one more week until she heads back home, and I can’t wait to have my home back to normal. I think my depression is just the fact that I’m not able to deal with my OCD tendencies around my house until she is gone. Once she is gone, I will have two days to myself that I will be able to reorganize my apartment the way I like it.

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Understanding depression in children

As a child or teen, did it bother you when people would comment “these are the best years of your life”?

For many children, this blanket statement is a stark contradiction from the reality they know. A bulk of people experience a childhood or adolescence that is not always filled with rosy or positive experiences.

Once considered impossible, today’s experts are aware that even young children sometimes suffer from depression. As a parent, it’s hard to acknowledge that your child might be suffering from this ailment. If you feel that a child is suffering from depression it’s important to understand the facts, signs, symptoms, and pointers to help a child cope.

Childhood Depression

The American Academy of Child and Adolescent Psychiatry now estimates that typically one in 20 children or teens are depressed. This is shocking when you consider that within every classroom is a high probability that at least one child in attendance is suffering from depression.

Depression is a real medical condition and should be treated accordingly. Many parents feel there is a stigma attached to a child if it is suspected that she suffers from depression. Unfortunately, this is an illness that they can’t just “snap out of” and requires attention.

“Depression is no more a result of ‘bad parenting’ than is diabetes or cancer,” says Dr. David Fassler, co-author of “Help Me, I’m Sad”: Recognizing, Treating and Preventing Childhood and Adolescent Depression. “All are real illnesses that require careful evaluation. The good news is that we can help most children and adolescents.”

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Guest blogger: “I swear it isn’t true”

EDITOR’S NOTE: This post was shared by Tourettes Action on its Facebook page. It originally comes from the blog of guest blogger Adrian.

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For nearly three years I’ve written a blog about running and mental health, and in particularly the impact of exercise on mental health, and vice versa. I’ve gone from a non-runner seeing everyone else do it, to a seasoned marathon runner, who alas is still beaten by the unprepared drunk smoker.

I’ve raced alongside men and women of every height, shape, size and disability and have had every sense of ego beaten out of me. More importantly, I hope my blogs have opened up a discussion about mental health, which still leaves millions suffering in silence due to the stigma attached, and the lack of government support for what is a huge problem in the UK and globally.

Through running, sales and various other events online and offline, I’ve managed to raise around £5000 for Mind and it is without doubt the best thing I’ve done, except perhaps for inventing the Snickers bagel.

However, I feel the need to apologise. I’ve written in depth of my own story, usually trying to use humour to keep people reading, thinking and supporting the cause. I’ve admitted my own battles with depression which have taken over much of my life, and which I’m aware will always be there.

Sometimes it’s the only way I see my life ending, but then something comes along and gives you hope. It does always get better, we all hang on to that fact, but battling year after year can take its toll on anyone. All any of us can do is keep talking, listening, trying to understand and realising that whatever problem someone has, physical, mental or just a difficult time in life, we’re all here together.

So why am I apologising? Well, I’ve held back a lot in what I’ve wanted to write about. I don’t just suffer from depression although it’s been a huge part of my life. I find that easier to write about because it impacts more people and helps more people relate, Mind is big enough charity to make real positive change and needs our help. I wanted to fight stigma, and it remains slightly cool because Stephen Fry has it. I’m half joking.

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Yet I have Tourette Syndrome. I hate the words. The sound of them, the sight of them, even grammatically, is it Tourette’s Syndrome? I suggest so given it’s named after someone called Tourette. Why couldn’t he have been called Gilles de la Awesome. I’ve got awesome syndrome. Or as the public seem to know it, hilarious swearing disease.

The butt of many jokes in TV and films, always the same with someone swearing inappropriately at a person or quiet location. I’m yet to see a genuinely funny Tourette’s joke. Perhaps that’s my main problem with it. I’m more offended as a comedy fanboy than I am as a Tourette’s sufferer. I once mocked someone drunkenly walking into a lamppost and several seconds later twitched myself into the same lamppost and fell over. Tourettic retribution.

The public perception has meant many people would have no idea I have it, some might not believe me now, some haven’t in the past. Sometimes I’ll be controlling it very well, maybe for months, but it is very much still there. More of you will of course be thinking, yeah, we knew all that you twitchy freak. And I have no problem with that.

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1st Childhood Mental Health Symposium to take place November 20 in New Jersey

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to present the 1st annual Childhood Mental Health Symposium on November 20 at Rutgers University. The event will focus on neuropsychiatric disorders including tics, obsessive-compulsive disorder (OCD) and trichotillomania.

“These disorders effect tens of thousands of children across New Jersey,” NJCTS Executive Director Faith W. Rice said. “We are proud to partner with the NJ Chapter of the American Academy of Pediatrics, the NJ Psychiatric Association, the NJ Council of Child & Adolescent Psychiatry and Rutgers University to share the latest and best information with New Jersey’s medical, mental health and education community.”

Program highlights include:

  • A guided tour of the world’s largest university-based biorepository and home to The National Institute of Mental Health (NIMH) Center for Collaborative Studies of Mental Disorders- which includes samples from families with schizophrenia, bipolar disorder, Alzheimer’s disease, autism, OCD, depression and ADHD.
  • A panel discussion offering insight into the personal challenges of managing mental health disorders and the best practice approach for achieving optimal wellness. Parents and children participating in this discussion will focus on social, educational, sibling and parenting issues.

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