Frustrated with what’s happening to my son

Not sure where to start but to say that I am very frustrated with what my poor 8-year-old son Jayden is going through and that I cannot help him. I need to know that we are not alone in this. We were newly introduced with this about a year ago. We have good days and not so good days.

We have changed medication several times and today is a new one once again. I’m feeling very anxious on how his day went at school. He is a very good student, A+ all the way in third grade, so we are not hurting academically — YET! I just need a place to share.

Chance to thank NJ Senator for supporting Tourette Syndrome was invaluable

A few weeks ago, Senator Stephen Sweeney visited the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to meet a few of the kids and families who benefit from the organization’s resources and tireless efforts. His visit was chronicled well by the local media,, with a video, photos and a story.

As those who consider NJCTS part of your family know, budget cuts have affected NJCTS funding drastically over the last four years, and threats to resources and services seemed inevitable.  So when the Center got the incredible news that they would be receiving a grant in this year’s State budget, my son, Ethan (13) and I were grateful for the chance to thank Senator Sweeney and let him know how our lives have been changed forever for the better because of the support and services of NJCTS.

As any parent of a child with TS knows, an occasion on par with meeting an important government official for a press conference, replete with reporters, cameras and ink barely dry on grant funds gifted, has the potential to create a stress-storm of epic proportions.

Despite our efforts to prepare Ethan for the change in routine and create calm, he woke up ticking, anxious, unreasonable and angry.  Of course, we considered cancelling, but we had committed, and Ethan very much wanted to tell his story.

At the NJCTS office, we sat around a conference table with the other kids/families who would be sharing with the Senator their stories about the ways in which NJCTS had helped them.  Up until the minute Senator Sweeney walked through the door, Ethan’s vocal tics were frequent, and he persistently fake head-butted me, one of his newer tics where he thrusts his head forward as though he’s going to hit me in the face and stops short before he actually does.

And then Senator Sweeney entered the room, and his presence was calming.

Continue reading

RAGE!!! Part 4: Prepare a plan

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

Rage tends to make family members feel hopeless and out of control.  We began our discussion in Neurologically Gifted’s article Rage 1:  About Rage.  Preparing a plan to deal with rage in the home puts an end to those feelings of hopelessness.  With a predetermined plan, you will have responses and strategies that you and your family can rely on.  You will now have something you can do about it.

When preparing to take on rage in our home, we stepped back to observe carefully what was happening.  We watched for triggers for our son’s rage, how it occurred, and how we responded.  In doing so, we were able to uncover our own (ineffective) default behaviors.  (See Neurologically Gifted’s Article Rage 2:  Look, Listen and Focus).

Once we had identified the behaviors in our family (rage, triggers and responses), we sat down with our son to discuss those patterns.  We openly and honestly discussed our feelings.  With care and support, we helped our son explore what he felt before, during and after a rage episode.  We made it clear to him that this was a family problem and that as a family we could find solutions and improve our situation.  (See Neurologically Gifted’s Article Rage 3: Talk About Rage.)  With this critical step completed, it was time to for us to make a family plan to get control over rage in our home.

Make House Rules

  • Rage 4 NeurologicallyGifted.comMake rules with your child.  Ask them what rules they think should be included.  Prompt them by letting them know that the rules will apply to everyone in the family.  Ask them how they would NOT want to be treated by others.  Ask if there are things they would like to change by making a rule.  Discuss with your child why the rule is important and the natural consequences of non-compliance to the rule.  
  • Guide your child through the rule making process.  Keep rules simple and concise for easy recall.  
  • Do not over-burden the process with too many rules.  Choose your battles, picking only rules that apply to your greatest challenges. Over time, your child will become better able to self-regulate their emotions and responses.  As your family begins to experience progress you will be able to change your focus and rules to address other priorities.
  • Keep rules obtainable and focus on safety.  For example, a rule prohibiting swearing is not realistic for a child with coprolalia.  A rule prohibiting anger or frustration isn’t appropriate either as we all have feelings.  In such a case, the family rule could outline acceptable ways (and places) to express anger and frustration.   You want your child to be successful, gain confidence and learn to apply skills for managing their emotions throughout this process.  
  • Keep copies close by for quick reference.  Having the rules posted in their personal space as well, will allow the child time to review expected behaviors and natural consequences of prior behaviors.  In our home, we placed a copy in our son’s bedroom, and referred to them at bedtime when we debriefed the day’s successes and challenges.
  • When referring to the rules:  Give kind and gentle reminders.  Reminders could include what the family (including the child) agreed would promote a safer and more peaceful environment.  Referencing the rules on paper takes the blame/authority away from the offender/enforcer and places it on the family rules.  A child is less likely to express anger towards a predetermined rule, rather than to being told to stop what they are doing by a parent.   Avoid trying to catch your child breaking the rules or to use the rules in a punitive manner.  You are attempting to use the rules to guide them in a predetermined way to modify their rage, not to punish them. Continue reading

My TS, My Story: Part 2, Understanding my tics, explaining my understanding

Part of the Tourette Syndrome Foundation of Canada’s mission is to help individuals affected by TS through programs of self-help. That is why our posts this week will focus on self-understanding, self-knowledge and self-awareness. Today’s post is from Tina T.

closeup-on-womans-hand-writing-in-planner460x300As a female diagnosed with Tourette Syndrome and someone studying in the health-care field, I have made a point of becoming very familiar with my tics and the ways in which they present themselves.

As I mentioned in part one of this three-part series, I was diagnosed with TS at 8 years of age. Within the past 10-plus years, I have experienced many different forms of tics.

Though I was diagnosed with a mild case of the disorder, I have experienced more severe episodes. This is not a big surprise, since tic severity levels often vary not only from person to person and but also over time.

Some people with TS experience a physical clue right before they tic (called a premonitory sensation). I’ve worked hard to try to understand my tics and any physical clues/cues that precede them. Continue reading

Check out the book “Welcome To Biscuitland”

BiscuitlandLiving with a disability is challenging, especially one as misunderstood and publicly visible as Tourette Syndrome. “Welcome to Biscuit Land: A Year in the Life of Touretteshero” (Chicago Review Press, April 2013) by Jessica Thom, with a foreword by Stephen Fry, is an honest account of Thom’s life as she navigates the world of public transportation, working with children and daily tasks complicated by her uncontrollable verbal and physical tics.

Frustrated by a lack of understanding, Jessica set out to document her struggles and successes as a person diagnosed with severe Tourette. Squawking on the bus, shouting the word “biscuit” several hundred times a day, hitting herself in the chest until her knuckles bleed, applying for disability programs to cover the extra expenses of living with Tourette and explaining her condition to gawking onlookers might have caused her to succumb to depression.

However, she chose to see herself as Touretteshero, “changing the world one tic at a time.”

“Welcome to Biscuit Land” is a celebration of the humor and creativity of the syndrome. Thom experiences compassion in the form of kind strangers who defend and help her, understanding responses of inquisitive children and love and support from a remarkable cast of friends and family members including Leftwing Idiot, Fat Sister and King Russell.

Living with Tourette isn’t easy. “Welcome to Biscuit Land” is funny, moving, sad, surprising and ultimately heart-warming account of Thom’s contagious optimism.

Thom studied drawing at Camberwell College of Art, works as the project coordinator at Oasis Children’s Venture in South London, and writes her daily blog Stephen Fry is a well-known actor, screenwriter, comedian, author and director.

A personal account of living with Tourette Syndrome & associated disorders, part 3: Quality of life

In my first two posts, I talked about what my life was like early on and the various phases of treatment I had to go through leading up to present day. Now, I’ll talk about how Tourette Syndrome can hinder one’s quality of life, especially when it comes to work,

Tourette Syndrome is not life threatening, but it can be living threatening — and what I mean by this is that it can seriously hinder you from living to your full potential.

Probably the most difficult time for a person with Tourette Syndrome is the period of transition from school to the workforce and life, because Tourette Syndrome really hinders you during these periods of significant transition. For people with Tourette Syndrome this period is commonly referred to as a “transition cliff.”

I know this as a fact because right from the time I graduated university to the time I was diagnosed and started treatment for Tourette Syndrome some 15 years later, I was in a void of not being able to function properly — a period where I had various jobs, many of which were part-time, so my career development suffered immensely.

Many aspects of Tourette Syndrome including the mental anguish of emotions that we go through on a daily basis are very difficult for someone who doesn’t have the disorder to understand, which is why properly educating people about the disorder is very important. Continue reading

A personal account of living with Tourette Syndrome & associated disorders, part 1: Early life

I hope the essay that follows about my experience dealing with Tourette Syndrome serves to help the individuals suffering from the disorder and their parents. I’ve made the essay as detailed as possible while at the same time not making it too long to read.

I’m a male in his early 50s, who for virtually all of his life has had several motor and vocal tics. I basically lived with these tics not knowing where they stemmed from. The primary motor tics are: eyebrow raising and squinting, shoulder shrugging and torso moving. The primary vocal tics are: stammering (at times severe), rapid speech, altered (higher) speech volume, word emphasizing and the repetition of words or phrases.

The motor tics have caused peer rejection at times (especially during my younger years). The vocal tics, however, I’ve found to be most debilitating to my social life and career because of not being able to communicate effectively; many times not being able to communicate at all because of severe stammering (causing me to freeze-up when trying to speak as if experiencing speech paralysis).

If you can’t communicate, there is no point in how much you know because you can’t express it properly to anyone. Continue reading

10 ways to get your kid to work around the house

If you read my post on Friday about child behavior being in the eye of the beholder, you’d know that I promised to give you 10 ways to get your kid to work around the house. Well, I’m a woman of my word, so without further ado, here you go:

  1. Have a family meeting. Let them know you love them to pieces, and because you love them, you’re going to help them be more part of the family.
  2. Have them come up with ideas of things they can work on. Some ideas you’ll keep: Taking out the trash or clearing the dishes! Others you will ixnay, like: We get to go to Chuck E. Cheese every time we remember to flush! It’s not the ideas you follow up on with the kids that count. It’s listening to them that makes all the difference. (But in the end, it’s a dictatorship. Mom rules. So sorry!)
  3. Don’t install more than 3 new things at a time. I heard once that kids can’t take more than 3 changes at a time. I’ve found that to be true. Work on those for 21 days until they become a habit, then move on to the next three. Want to write a list of 100 things that need work? Great. But don’t implement more than 3 at a time or you are headed for frustration. Continue reading