“Ducks” and the beginning of our TS journey

When I first suspected and began to research TS I said to myself, okay, okay it will be alright. I am the type of person who will research, read, research, and read whatever I can on any challenge that affects my life. I need to know everything about it so that I can make informed choices. Although I had suspected TS, it was till a bombshell that had exploded, however, I kept moving on for every detail I could find about TS. I was given so much help during this time from the neurologist, PATSA, blogs, books, and movies. The book that I still refer to is “Against Medical Advice,” by James Patterson and Hal Friedman, and the Hallmark movie, “Head of the Class.” These and more helped me so much in the beginning and to this day. I want to be able to help other parents, especially new parents, to know that TS is not a death sentence. It is the beginning of a journey we begin for our children by learning about TS, and the tools they need to be successful, and eventually transfer the reins to them.

My son has TS. We talk about TS as if it is a “Person” or “Entity.” When he was younger, I wanted to identify TS not as something bad, but to get him to understand what he could and could not do in order to control TS as much as possible. One of the other things we do is call his tics “Ducks.” I will say, I think I see a “duck.” Sometimes he will agree, or not. We will go through this a few more times maybe over a week or two, until I say nope, I was wrong, or he realizes that there is really a “duck” roaming around. At that point we will discuss if Competing Responses are necessary, or if he just has to make note of it. We have come a long way from the beginning when we first found out about his diagnoses. He has come a long way, and I am so proud of him. He was accepted and attended the Tim Howard Leadership Academy last summer, and he said on the ride home, “Mom I heard about kids with TS but I never saw any, and I felt like home for the first time.” What more can a mother ask for from her child.

52 Weeks of TS: Week 52

EDITOR’S NOTE: Over the past year on Tuesdays, noted Tourette Syndrome advocate Troye Evers has shared his “52 Weeks of TS” blog journal with the TSParentsOnline community. This is the LAST week of this series, so there’s a chance you missed one or 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.

Is it really here? Have we reached the 52nd week of this series? From doctor appointments to social events, from new tics to new jobs, I have expressed it all and I have learned and grown from the whole experience. I’m sad that I have reached the end, but excited for what will come in the future.

But I’m still led to ask, “Why do I do this to myself?” Why are there certain occasions that I still let fear and embarrassment rule my life and cause me to be this untrue version of myself? The answer is easy, it’s those judging eyes. It’s much easier when you’re dealing with a one on one situation, but when you have a room full of people looking at you, staring at you, judging you, it can be hard.

It brings me back to my school days, sitting in the classroom and having all my peers and teacher looking at me. The only difference now is that I have an explanation. I know what to say to someone who asks that dreaded question, “Why are you doing that with your head?” but there is still that fear of people asking.

The rest of the week went well, but just more running around and very little time to rest. Besides working, I also was planning a  dinner for my co-workers. I have OCD, and for some reason I think it would be a good idea to invite 10 people over to my house for dinner. Do I really want 10 people walking around my safe zone, spreading germs, making messes, and moving and touching my stuff?

Well, I guess it’s too late. I opened my big mouth. Having a dinner party with this amount of people takes a lot of planning and organization, which is fine with my OCD and anxiety disorder. However, did I really need to set the table a week before the party? Yep, a week before hand. My husband questioned me about why I set it so early and I explained to him that I did not have time during the week to do it. Really? The truth is I’m OCD. I had to set it up early enough so I would know it was perfect. Everything had to be in the right place, and I needed to make sure it was all organized correctly.

Despite all my OCD’s the dinner went very well. Normally with an event like this, I would have asked everyone to take off their shoes as not to spread the germs of the NYC streets all over my apartment, but I was not able to do this. About 30 minutes before everyone arrived, my husband shattered a glass top to a casserole dish. The glass flew everywhere. Besides the kitchen, I found glass in the hallway and living room. We tried to clean it all up, but I knew there still might be a piece somewhere. Now the decision has come. I would much rather the germs of NYC in my apartment than the chance of someone’s blood.

How does my mind go to this extreme? Am I really OK with dirt from the streets on my floor, but not blood? I mean I could always mop the floor and sanitize them to clean up the dirt, but what if the blood touched me? OK, I know it sounds insane, but for me blood leads to death. What if someone has some deadly disease and they cut themselves and then I cut myself? OK, it doesn’t sound insane, IT IS INSANE!

Basically, what I’m saying is that a broken glass in the kitchen will lead to my death. Are you kidding me? I know I need to calm down about some things, but this is how I am. Everyone came over and we had a delicious meal (and everyone kept their shoes on, so I’m glad to say the grim reaper will not be making a stop at place anytime too soon.)

As I reached the end of the week, I reached the end of this series. It’s been a wonderful year, and I achieved my resolution. I reached out to so many people and educated many of them. I opened my mouth and through my words, I learned more about myself. I think my resolution for the year to come is to not be afraid. To be myself.

The end.

Myths and truths about Tourette Syndrome

Ever since George Gilles de la Tourette discovered Tourette have people discussed and questioned real signs of the syndrome. Everything starting with how the disorder manifest and ending with the ways it should be treated is being discussed by doctors, patients and their relatives for over 100 years.

The general meaning of the syndrome is described as a neurological disorder which is characterized by frequent involuntary vocal tics and movements.

According to a PhD clinical researcher and doctor Douglas Woods, Tourette happens in 6 to 1000 people. Adults and kids suffering from the disorder can experience numerous problems like repetitive strain injuries, numbness, and ADHD. Kids suffering from Tourette increase chances of getting ADHD (attention deficit-hyperactivity disorder) 60% more.

In this article we will go through top myths and truths about Tourette syndrome to create a clear picture of the disorder:

  • Myth #1. Everyone with Tourette syndrome use obscenities uncontrollably. The majority of people describe Tourette syndrome as such that makes you swear uncontrollably, in fact some believe it to be the definition of the syndrome as they often see in movies. However, only 10% of people with the syndrome experience it.
  • Myth #2. Tourette is caused by bad parenting. Doctor Woods says that the syndrome is genetically based. And although scientists couldn’t isolate a single gene, they came to a conclusion that it is a complex of genes that causes the syndrome, which proves that it has nothing to do with parenting.
  • Myth #3. Fear causes tics. Some people think that tics caused by Tourette syndrome are actually caused by nervous surrounding and fearful environment around the patient. In reality, it has nothing to do with the way of living, it is caused by the basal ganglia dysfunction, involved in motor control.
  • Myth #4. Medication is the only treatment. It appears that medication is not the only treatment when it comes to Tourette. If tics aren’t repetitive enough, individuals, especially children can be cured with a help of behavior therapy. The therapy teaches patients to recognize the time when tic is about to happen in order to control and even prevent it. People with Tourette syndrome admit to experience a premonitory urge right before the tic, which can be expressed as an itch or tickle.
  • Myth #5. Teaching kids to recognize tics can increase their repetitiveness. Researcher found that kids who have successfully suppress tics, do not have an increase in tics. The lasts study showed that in some cases, tics decreased by 17 % after the therapy.
  • Myth #6. People with Tourette cannot lead normal, active lives. On the contrary, people diagnosed with Tourette syndrome tend to be highly successful people. David Beckham, Michael Wolf, Dan Ackroyd and Marc Summers are living illustrations of successful people who have Tourette. 

UPCOMING WEBINAR: February 25 on Sensory Issues at Home & at School

THIS WEEK’S WEBINAR

Making Sense of Sensory Issues – How to manage heightened senses at home and in the classroom

February 25, 2015

Presented by Dr. Michelle Miller, Psy.D., a New York State-licensed clinical psychologist who works at Therapy West, a group practice in Manhattan, and as post-doctoral fellow in the Tourette’s Syndrome Clinic at Rutgers University in Piscataway, N.J.

Over the years, parents and teachers have been increasingly attending to childrens’ sensory-related struggles; however, understanding and supporting sensory problems still remains unclear for so many people who work with children. Research also has suggested that 1 in 6 children are significantly impacted by sensory issues, further highlighting the need for this area to be addressed. This webinar is aimed at exploring what sensory issues are, how they look in different children and adults, and what can be done — both at home and at school — to help children with sensory issues thrive.

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UPCOMING WEBINAR: January 21 on Habit Reversal Therapy

THIS WEEK’S WEBINAR

Creative Applications of Exposure Therapy and Habit Reversal Therapy

January 21, 2015

Presented by Dr. Joelle Beecher-McGovern, a clinical psychotherapist at the Child & Adolescent OCD, Tic, Trich & Anxiety Group (COTTAGe) in the Department of Psychiatry at the University of Pennsylvania School of Medicine.

Cognitive-behavioral therapy has strong experiential support for a number of psychiatric disorders among children and adolescents. It includes several treatment modalities, including exposure therapy for pediatric anxiety and habit reversal training for tic disorders and trichotillomania. Despite the strong evidence for these treatments, they can be difficult for children and families to implement for a number of reasons, including logistical barriers, motivation issues and difficulties with follow-through in out-of-session work.

In this presentation, Dr. Hilary Dingfelder will briefly describe these treatment modalities and discuss some of the practical issues associated with implementing these treatments with children and adolescents. Dr. Dingfelder will then discuss some creative applications of these strategies to enhance these treatments for children and adolescents. Examples of areas that will be covered include:

  1. How technology can be used to supplement treatment (e.g., using the smart phone to monitor progress or supplement exposures)
  2. How to strengthen reward plans to improvement motivation
  3. Creative ways to enhance exposures with young children (e.g., through the use of games and puppets).

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A New Year, part 1: My OCD will work for me

2015 A New Year

Success can drive us toward a great goal or it can act as a cruel task master. Unfortunately, for those on the OCD spectrum, it tends to lean more toward the cruel task master. And it doesn’t have to apply to all areas of life, but often focuses on two or three big sections. These parts of your life can be careers, child rearing, balanced checkbooks, balanced diets, or continuing your education. While all of these goals are good, OCD can take them to the extreme. Pieces of your life that should stay tucked into their own little corners creep into everything else, and what was once a good goal has become your slave driver.

This part of OCD really tends to fall to the obsessive side, rather than the compulsive side of the disorder. I had a lapse this last week that I’ve been working to push back into its proper place in my life. Something reminded me of an issue I had at work back in college. I was late to work by more than five minutes three times, and I received a verbal reprimand. In the scope of things, it really wasn’t a heinous crime, but it’s tried to haunt me for years.

Did it ultimately affect my career? No. It was a minimum wage job that I kept in college to help pay for tuition. Did it affect my education or my family life? No. In fact, that I’m aware of, it had no effect on any part of my life. Except for my OCD. That stupid incident still rears its ugly head at any chance it gets, and if it catches me off-guard, it can still send me back into a spiral of shame and guilt, one that can even elicit a physical response, such as blushing or an increase in my heart rate. And it can push me to work even harder than I’m working already…which is pretty darn hard.

2014 was a good year for my family. We’re active members in a church family that we love, we both enjoy our jobs, our puppy keeps us laughing, and we’ve now got a baby on the way. It was also a year of learning, however. This year, I feel like I’ve really begun to manage my OCD perfectionism better. It’s not been a walk in the park, but I’m on my way.

UPCOMING WEBINAR: November 12 on getting kids motivated for school

THIS WEEK’S WEBINAR

Getting Kids Motivated for School: Strategies to foster your child/teen’s motivation to achieve in school

November 12, 2014

Presented by Dr. Graham Hartke, is a licensed psychologist in private practice in Roseland, N.J.

As our schools continue to increase curriculum, testing, and workload standards, many kids and teens are struggling to stay motivated in school. These are students who do not like school, struggle to complete homework, procrastinate often, have slipping grades, are bored, say they “don’t care about school”, avoid school work, get in trouble, are disorganized, and/or feel disconnected from classroom learning.

This webinar focuses on strategies parents and educators can use to increase student motivation to succeed in school. Strategies will address the causes of low motivation, learning difficulties, improving the homework process, improving organization, and reducing procrastination.

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OTHER UPCOMING WEBINARS

 

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

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List of all NJCTS webinars, including October 29 on mental health in the African-American community

THIS WEEK’S WEBINAR

Mental Health Stigma in the African-American Community

October 29, 2014

Presented by Dr. Christine Adkins-Hutchison, Associate Director of the Office of Counseling and Disability Services at Kean University in Union, N.J.

Asking for help of any kind can be difficult. Seeking psychological services can be even more challenging. For many in the African American community, acknowledging the need for help and pursuing assistance in many forms, especially in the form of counseling, can feel next to impossible.

This webinar will discuss the stigma regarding help-seeking and mental health issues that persists in this ethnic community. How to recognize the need for support, and ways to encourage help-seeking in this population also will be considered.

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OTHER UPCOMING WEBINARS

Getting Kids Motivated for School

November 12, 2014

Presented by Graham Hartke, Psy.D.

More information about this webinar »

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

Continue reading

List of all NJCTS webinars, including October 8 on Tourette in the Asian community

THIS WEEK’S WEBINAR

Mental Health Issues in Today’s Asian-American Community

October 8, 2014

Presented by Dr. Andrew J. Lee

Dr. Lee designed this webinar to provide participants information about the stigma surrounding mental health issues in Asian and Asian-American communities, some cultural factors contributing to this stigma and some suggestions as to how to talk with Asians about mental health issues.

Dr. Lee will cover Asian cultural values that may contribute to the stigma associated with seeking out mental health services, the model minority myth and the negative implications of this myth, the role of ethnic identity and acculturation, and what can be helpful to know in speaking with this ethnic population about mental health issues.

Dr. Andrew J. Lee is the Director of the Office of Counseling and Disability Services, which includes both the Kean Counseling Center and the Kean Office of Disability Services, at Kean University.

REGISTER FOR THIS WEBINAR »

OTHER UPCOMING WEBINARS

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

Continue reading

List of all NJCTS webinars, including October 1 on trade secrets of a Tourette doc

THIS WEEK’S WEBINAR

Trade Secrets of a Tourette Syndrome Doctor

October 1, 2014

Presented by Tolga Taneli, MD

Would you like to learn some great tips on speaking with your child’s doctors?  How about getting them all to collaborate with each other about your child?  Did you ever wonder about the drug approval process?  Learn about this and more in this webinar!

REGISTER FOR THIS WEBINAR »

OTHER UPCOMING WEBINARS

Mental Health Issues? Asians have those? Understanding the stigma surrounding mental health for Asian and Asian Americans

October 8, 2014

Presented by Dr. Andrew J. Lee

More information about this webinar »

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

Continue reading