Happily Ticked Off — The Book, Part 6: Chapter 3

At long last, here is Chapter 3 of 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 hear from you, too!

TOC

Chapter 3 — ScholasTIC

Your TS Child (And you, freaked out mama) 

Will Surive Grammar School

Five Years Later

Fourth grade started out like third grade. It had only been three weeks and I’d been stopped by the teacher three times. The first incident was innocuous enough.

“Mrs. Frazer!” Nicky’s teacher, Chris, called to me with a smile.

I internally kicked myself. “All this could have been avoided if I’d picked him up in the carpool line. This thought was quickly replaced with, “Just because you avoid an issue doesn’t make the issue go away. It just prolongs it.”

I had one more thought that went something like, “Stop talking to yourself and pay attention to the teacher- ooooooh, a hummingbird!” at which point I directed my concentration where it belonged. Turns out, if only Nicky had done the same thing, I wouldn’t be standing in the blue door frame of an elementary school room on a Friday afternoon.

“Nicky had a hard time focusing today,” he informed me.

Last year, upon hearing similar words from his third grade teacher, my face dropped like a bad L.A. facelift. I was crushed. Four years into his TS diagnosis, his tics were still pretty minimal. With his penchant for pink umbrellas and impromptu standup routines, I knew he’d never be an academic soldier, dotting his i’s and crossing his t’s with laser like precision. But I was still holding on to the hope that Nicky’s eccentricities wouldn’t mark him as different.

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“He just can’t control it”

My son, almost 11, was diagnosed with TS about 2 years ago. Looking back, it had been going on for about 2 years prior to his diagnosis with symptoms of sniffing, throat clearing, etc.

Everything became clear during a travel baseball game when he was on the mound to pitch. He could not control his head and neck, except during the actual pitch. High anxiety situations and fatigue provoke his tics.

Currently, the tics are controlled with a low dose anxiety medication. BUT the behavioral characteristics of a pre-adolescent, pre-puberty, pre-teen is our main concern at this time. It is exhausting to manage! Struggling with dysinhibition, oppositional defiance, rage, etc.

What is breaking my heart at this time is the fact that he is a really good kid, (straight A student in high-ability classes and manages his time with sports) and how hard he is working and fighting to keep it all together all day — only to release his wrath when he gets home on his little brother and sister and parents!

I can tell that he knows what is going on, but just can’t control it.

Happily Ticked Off — The Book, Part 5: Chapter 2

At long last, here is Chapter 2 of 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 hear from you, too!

TOC

Chapter 2 — CinemaTIC

Tourette Syndrome – Movie Style!

If Tourettes’ was your movie, what genre would you write? Whatever you choose, be prepared for lots of action, drama, tears and laughter. 

Selling a movie isn’t much different than being handed a Tourette’s diagnosis. Both involve stories of heartfelt love, drama and unpredictability. Most people have a general idea of what might be involved to proceed, but when push comes to shove, no one is really prepared for all the twists and turns.

What path does one take?

What people do you need to speak to?

Do you have to spend a ton of time and money to get great results or is it just one giant crap shoot? And really, like the script itself, is there a happy ending?

It occurs to me that despite big talk about loving the adventure of movies and parenthood, everyone feels the most safe and satisfied when they can count on the big shiny finale. Give us happy bows and Happy Meals. Let us get fat on security and hold a bit tighter to our overpriced gallon sized Diet Cokes through the scary parts, because at the end it’ll be worth it. That theme song will blare and the credits will roll.  Boy that was sure scary there for a while, but look how great it all turned out. And that heroine sure had great hair the entire time – even during the knife fight.

The problem with tics is that you can’t count on that perfect happy ending wrapped up with a bow.  There are millions of ways to manage Tourettes, and with a personal plan, created through trial and error, oftentimes one can suppress the symptoms a good deal, but there is no perfect solution.

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My 17-year-old son needs help

HELP!!! My 17-year-old son had Tourette Syndrome onset about a year ago and hasn’t been “diagnosed”. He is miserable and confused and has stopped going to school. He has isolated himself socially and has just given up. He will not express gimself to doctors for the correct diagnosis. Can you guys show him some love????

Please, he is a great guy who has tranformed before my eyes. He feels alone and trapped and will not talk about it at all …. and me and his sister are the only ones who have encountered his tics. Thanks!

52 Weeks of TS: Week 38

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

My life is a waste of time. Now don’t jump to conclusions and take that the wrong way. The reason I’m saying this is because I waste so much time in my life. I don’t think many people realize how much time is wasted having TS. I often wonder how much more free time I’d have if I wasn’t so focused on ticcing, or suppressing my tics, and don’t even get me started on how much time I waste with my OCD’s. Having TS is a full-time job, and I’m not being paid for it. I need to go to the human resources department and find out where my paycheck is.

The reason I am talking about wasting time has to do with a big event I was part of this week. Yep, I’m talking about Tic-apalooza. I packed all my stuff a week before leaving because I’m so OCD, but because of my OCD, the night before I left, I had to unpack all of my stuff and repack it just so I was sure I had everything I needed.

I was leaving the safety of my home, and going somewhere where I knew I was not going to be able to run to the store and get anything I forgot. Yes, I made sure I had my basic stuff; clothes, sleeping bag, etc. However, that was not my main concern. I needed to make sure I had enough hand sanitizer, Lysol, tissues, and hand wipes. I was headed to the wilderness with a bunch of kids, I was not messing around, and no germs were getting in this body.

As for Tic-apalooza, what can I say? I’m somewhat left speechless. It’s hard to put this weekend into words, but I’m going to try. Here’s a few. Amazing, astonishing, remarkably incredible, miraculously mind-blowing. I guess you could say I had a wonderful time. I was having anxiety about venturing to this camp, and worried about spending time with so many kids, and dealing with my OCD’s, but I went and felt completely at home. There were over fifty campers with TS, and it was such an inspiring weekend.

There was no hesitation in my mind that volunteering to be a counselor for this event was the right thing to do. However, I was concerned because this was the first time I had been a camp counselor. In fact, this was the first time ever going to camp; I never had the opportunity to go away to camp as a kid, which brought on more excitement and trepidation.

It was such an incredible experience to spend the weekend with these brave fifty kids. Friday morning when I arrived at the camp, I was excited when I saw numerous hand sanitizer machines all over the mess hall. Even though I brought enough for the whole camp, it was a great feeling to know that they had some all over the camp.

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