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.

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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.

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