Rage is really affecting my TS son

Hello, my name is Helen, and I am married and have four sons.  Our first son was diagnosed with TS at the age of 9.  No one in our family has TS that we know of.  We were lucky enough to only have one son with TS.  We were told 50/50 one of our other sons would have it.

Anyway, my son Billy is now 29 years old.  From nine years old till about 16, Billy was on meds.  He decided in high school he didn’t want to take meds cause they made him tired.  Billy, at the same time, started experiencing with marijuana and alcohol.  Billy graduated from HS and got into the school of engineering at Rutgers University after making quite a number of outstanding schools.

Freshman year went fine.  Sophmore year Billy decided to join the engineering fraternity.  His graes declined and he was put on academic probation.  At that time he started dating a girl named Kat.  She was a grade ahead of him and studying psychology.  Their relationship ended after three years because of Billy’s temper and drinking.

Billy then graduated and moved into the city for five years.  He had another girlfriend Tara that last almost three years with lots of fighting and drinking.  Billy has anger issues.  That relationship ended.  Billy decided he wanted out of the city and to buy a house.  He moved into a houser closer to me and my husband.

Billy had some problems with the house but also started dating a new girl named Gabby.  That lasted a few months when she broke it off because of Billy’s anger issues.  Billy came over for dinner Wednesday night and admitted he was depressed and ruined three relationships because of his anger issues.  He realizes he needs to see a TS doctor.  He is in the process of finding one.

My heart goes out to Billy.  I fear of suicide since he has used the term numerous times through the years.  He’s also hating his job at this time.  The word hate is used constantly in his language.  His brothers are afraid of him when he gets angry.  I believe his drinking is out of control and a way of medicating himself.  I have alcoholism in my family and I am very afraid that Billy is succumbing to alcohol.

It breaks my heart to see my son like this and feel like there is nothing I can do but be supportive of him.  Let him know we love him and will be there for him no matter what.  To come to us no matter what he feels.  I hope he finally  takes advantage of the TSA and joins blogs and talk to other people about his issues.  I wish he could only see how bad TS is for others.  His is mild compared to some adults and children.

I just read about “rage” on Facebook and that totally describes what Billy is going through. It is good to know that he can control it, if he puts his mind to it.  Then again, I wish he would stop drinking until he can control his rage.  I look forward to participating in this blog about TS. I should’ve done it years ago instead of sweeping the problem under the rug.

52 Weeks of TS: Week 22

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 21 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Pinch pinch rub, Pinch pinch rub
Every once in a while I might do a tug
All day to the night, Until it feels right
Over and over, that’s the way that it goes,

That’s the way that it goes, with the tic of my nose
The loud clap of your hands, Brings the twitch of my neck
And the honking of horns, Brings the jerk in my back
I think there’s a new tic starting off,

Besides my hum, I now have a cough
I never reveal the real me,
I hide and I hide, suppressions my key
Behind closed doors, I jerk and I twitch.

This life with TS is really a bitch
But I write down my story and help people out,
There’s something to say, what our life is about.
My TS is no BS, my doctor gave me a dx

So stop staring and mocking, and pointing at me
Come ask me some info, education is the key.

Hello hello hello everyone. So I thought I’d start this week off a little different, with my little attempt at poetry. Whether its good or bad, it’s all about expression. We have to open our mouths and express ourselves. I’m always trying to educate someone about TS, but I’m also constantly learning more and more about my TS and myself.

Continue reading

Why is my child mean?

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as a 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.

There have been many parent posts online regarding the general and persistent negative behavior patterns of their children.  They describe their children as being “mean” on a regular basis.  It’s not uncommon to see this default behavior in children who have neurological challenges.

In my presentations, I call this the “Awfulizer Syndrome.”  To these children, everything is awful.  They always seem annoyed or angry.  They are routinely mean or insulting.  They often engage in name calling and typically communicate in an unkind or angry tone of voice.  Generally negative in most aspects of their daily life, they are most often disagreeable.

Without intervention and support, it is difficult to correct these behaviors.  From personal experience, as a person who has overcome this challenge and a parent who has dealt with it, I can tell you it takes a great deal of effort to overcome this neurological affect.

Step 1:  Identify your child’s behaviors and the responses of your family members

Identify and address when your child is mean through his/her words, voice or actions.  Be sure to do this when your child is in a calm and receptive state of mind.  Session need to be frequent and on-going.  Share your feelings with your child.  Explain how their words/tone/behaviors make you feel, and how it affects your thinking about them (e.g. “Although I love you, your tone of voice makes me feel mad and I don’t want to be around you when you are mean to me”).  This response is a natural consequence – people don’t want to be around people who are mean or unkind.

Why Is My Child Mean?!?  NeurologicallyGifted.com 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

RAGE!!! Part 1: Learning through experience

Ken Shyminsky, a 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.

As an adult who has Tourette Syndrome and associated disorders, I have an intimate understanding of rage through experience.  I understand the frustration of shouldering the burden of getting through every day filled with tremendous and constant challenges due to my disorders and associated symptoms.

These demands not only test one’s patience continually, they test one’s ability to be still, to perform routine tasks and even to relax.  If unable to calm themselves during times of  stress, the sufferer may “boil over” emotionally, and release their frustration through angry outbursts. (See our post Mental Health Challenges in Neurological Disorders for more about stress.)

People with neurochemical disorders including Tourette Syndrome and ADHD often have a low frustration tolerance.  They are usually predisposed to poor self-control in the manner of impulsivity and rage.  This is especially true in children with neurological disorders.  Children are just learning the coping mechanisms and strategies to assist them with daily struggles due to their disorders as well as managing the common unpredictable stress life brings.

Dealing with the day-to-day of managing their symptoms (which are always waxing and waning) drains away their mental energy to cope with anything else. They can easily become overburdened with stress.  Add to this, an under equipped skill set to calm themselves, and outbursts of rage can occur at even the smallest challenges.

lightening storm neurologicallygifted.comAt times, the release of this frustration goes beyond the person’s control and the combined behaviors that occur are termed rage.  Specific biochemical and hormonal changes occur within the body and brain including the “flight or fight” response.

Rational thought, perception and reasoning stop functioning.  Learned strategies for calming are no longer useful.  The person will often say or do things they would not have ever thought of doing.  Often, the person may have no memory or have an altered memory of events that occur during a rage.

Shame and depression may also follow rages as the person wonders how they could have acted so poorly and so out of control.  It is important for the individual to recognize that the actions that occur during a rage are beyond their control.

Feelings of shame post rage will accumulate without this understanding and make the individual more prone to rage.  It is also important to understand that despite the involuntary nature of rages, there is help, there are strategies and people manage them effectively.  But how? Continue reading