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! 

Happily Ticked Off — The Book, Part 1: Dedication and Intro

Here  is the dedication and the first part of the introduction from my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to her from you, too!

TOC

Dedication

This is for you, Mamas

When my son was diagnosed with Tourette Syndrome seven years ago, I encountered loads of disheartening information on the internet about tics, ADHD, OCD and disturbed children with behavior problems.

I found blogs full of victimhood stories and medications gone wrong.

I found a few helpful but ultimately dry informational books written from medical and nutritional view points on how to suppress tics through natural or pharmaceutical means.

What I didn’t encounter, however, was a book on humor, support and most importantly, hope.

So I wrote one.

This book is not just for mamas dealing with Tourette Syndrome. It’s a love letter for all you moms dealing with an unexpected diagnosis. It’s the book I wish someone had written for me when I was hopeless, angry, and feeling so very alone.

It’s my sincere hope that this book will serve as one giant hug for your fears. May it whisper into your heart, “You did not cause this disorder. You are strong enough to handle it. Your child is perfect despite some medical challenges. You are not alone. I am here. YOU CAN DO THIS.”

For all you mamas out there who are hanging by a thread, I’m asking you to tie a knot and hang on. Happily Ticked Off was written for you.

Continue reading

Kane’s Journey: Tourette Syndrome

I created the Kane’s Journey: Tourette Syndrome Facebook page because last year when I posted something onto my Facebook about my son and his Tourette Syndrome, it was reported because someone found it offensive.

I am by no means ashamed or embarrassed of my son! I am extremely proud of him! He is such a tough little guy! On the Facebook page and now here on the TSParentsOnline blog I can post about his Tourettes/tics and how he is handling them while spreading educational facts on the syndrome. I have had so many people ask me questions through texts and private messages and requesting I start a page just for Kane and TS.

Having a child with impulse control disorder also can be very trying at times. His anger can turn on at a flip of a switch, a drop of a hat or with a wrong tone of voice. One morning it was the menu for school lunch. After a complete meltdown, he discovered he was reading the wrong day.

Most people who have seen these meltdowns have told me “Why don’t you spank him? How can you let him do that? He is just being a brat!” No, none of those apply. You see with impulse control disorder his anger cannot be controlled like yours and mine. He literally blacks out from time to time and when he comes out of it, he is always confused.

So please don’t judge my child for his emotional meltdowns, because, you don’t understand unless you’ve lived it.

More to come …

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

Dealing with stress

Having a neurological disorder can present many welcome abilities. However, they can also present many challenges. Many neurological disorders increase the likelihood that a person will suffer from a mental health disorders. Some of these disorders can lead to intense feelings of anxiety and depression.

Stress and Mental Health

NeurologicallyGifted.com Mental Health StressStress (good or bad) can exacerbate symptoms and lead to “overload”. Because some people who have neurological disorders are poorly equipped to self regulate themselves, they can unknowingly exhaust themselves physically as well as mentally.

In such a case, poor mental health may come upon them slowly, without detection. Or, a sudden stressful situation may occur, and it may “tip” a person into a state of poor mental health very quickly. Regardless of the cause, judgement will be impaired and a sufferer may feel overwhelmed and unable to cope.

In extreme cases, a sufferer may make harmful decisions (to themselves or others) in a failed attempt to cope with their situation, symptoms or fears. As someone with neurological disorders, I know I must be aware that my neurological disorders can pose challenges to my mental health and have the potential to lead to a state of mental ill-health.

It’s a reality that I must be aware of and vigilance is required in order to reduce the risks. I know that the times of greatest risk to me often occur when I am subjected to external pressure. Pressure is perceived differently by each person, based on their personal strengths and weaknesses.

Stress can come from work, family or stressful events such as having an ill friend or family member. To preserve my healthy mental health state, it is vital that I know what my weaknesses and my “triggers” are. Knowing what “stresses you out” will allow you to plan to avoid (if possible) the trigger or minimize its affect on your mental well-being. Continue reading

Sounding off about vocals: A real term for this irritation!

Those of you with tics who have written to me often say that your noises bug you. Those of you without TS but who live with it say the sounds can drive you batty.

I have nothing but sympathy for people with TS when their symptoms drive them nuts. Honestly, if my friend’s kid is ticking, doesn’t bug me in the slightest! But when it’s my kid, I really struggle.

Perhaps this is like people who have sympathy for the anxiety/neurotic/blabbermouth type. You might find those other emotionally inclined people funny, but if you lived with them, you might want to kick them to the closest pharmacy and insist they down a bottle of Xanax with a Zoloft chaser.

For those of you who have issues with vocals — despite feeling guilty for having such issues — I am pleased to announce you might actually have a mental disorder!

This just in from someone in my Twitch and Bitch private group: I had to share with my loyal mamas here! You’re welcome.

Misophonia:

Misophonia, literally “hatred of sound”, is a neurological disorder in which negative experiences (anger, flight, hatred and disgust) are triggered by specific sounds.  The sounds can be loud or soft. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff and is often used interchangeably with the term selective sound sensitivity.

Misophonia has not been classified as a discrete disorder in DSM-5 or ICD-10, but in 2013 three psychiatrists at the Academic Medical Center in Amsterdam formulated diagnostic criteria for it based on the largest cohort of misophonia patients so far, and suggested that it be classified as a separate psychiatric disorder. Continue reading