Counting my blessings

Can’t believe it’s been so long since I posted. I need to get better. 🙂 I graduated and I passed both of my state exams. Now I just wait to get certified and of course get a job. I’ve been applying for several districts in the area.

Jacob is nearly done with the 5th grade. Thank God! I’m really hoping this move will benefit him personally and academically. He’s still having trouble with the kids at school. It’s hard when you know no one with the same issues and struggles. I mean, we know people, but no one within the “let’s have some coffee and cry together” kind of thing.

His tics are getting worse, but I think it’s mostly the anticipation of moving into middle school. Ahh, the worries of middle school. Those kids are terrifying to me, too!

He’s graduating next week, and I couldn’t be prouder. He’s not an A and B student, he never had perfect attendance, he’s got focus problems, and of course he can’t sit still to save his life. BUT you know what he does have? He has a heart of gold, a personality that takes a hold of others’ hearts, and the will and drive to be the best possible version of himself.

He fought to survive, and we are both still fighting to survive in this crazy world of ours. It’s a win for us because we have one another and I’m so very blessed to be Jacob’s mom. The best title in the world. ♥

Therapy works

I’ve been trolling a lot from my private group just because so much gold has been mined. I can’t help but share some of the nuggets. I promised them, even though I keep their names anonymous, that I won’t be “using” them forever for their stories. But sometimes I can’t help myself.

And since my group is called “Twitch and Bitch” I occasionally have to take advantage of my bitches. (Margaret, I’m sorry. That really was kind of crass. Please forgive me. It’s bad enough that I went through 3 takes of a video I’m making because I accidentally used my kids’ real names. Your security motions are slaying me!)

The other day, a mom — who I’ve known over 5 years — was freaking out over upping her son’s medication. She is nervous about upping it, even though she thinks he needs it, because she’s worried about what will happen if it doesn’t work. She’s afraid she might not be able to handle the disappointment.

I TOTALLY understand this. For you new moms out there, this is so very very valid. For you old-time TS moms, this is a valid feeling. The only difference between newbies and old timers, however, is that I get to be harder on the old timers. They are tougher, and if they are not, I make them tougher by giving them a little Andrea boot camp. I call it the Twitch and Bitch Slap.

Maybe you could benefit from this, too. If I hurt your feelings, I’m sorry. Please know it’s for your own good. And if you disagree, feel free to say so! (But it doesn’t change my mind.)

My Note to Old Timer Sad Mom

Here’s your Twitch and Bitch-slap: Continue reading

Check out the new Tourette book “Ticked”

Jeff Matovic has lived more than half of his life with a cruel case of Tourette Syndrome. For years, he experienced violent tics at inopportune moments, swinging his legs and arms around like a marionette without any control, left feeling helpless and depressed.

With his tics and outbursts getting progressively worse through the years and with no relief from drugs or therapy, Jeff decided to take action, convincing his doctors and insurance company to try an experimental operation — surgery to implant a small pacemaker into his brain — that would change his life for good.

For James Fussell, a journalist from Kansas who also suffered from Tourette, good days were hard to come by. Living for more than 40 years with the condition, Fussell finally hit his low-point — crying under his office desk — and didn’t know how much longer he could survive. It wasn’t until Oprah Winfrey sent him a tape of her interview with Jeff Matovic that Fussell saw hope.

“Ticked: A Medical Miracle, A Friendship, and the Weird World of Tourette Syndrome” (Chicago Review Press, May 2013), by James A. Fussell and Jeffrey P. Matovic, with a foreword by Jeff Foxworthy, is the tale of one man’s personal struggle and triumph over a debilitating condition and how his miracle has inspired others.

“Ticked” gives a rare glimpse into the lives afflicted by the bizarre brain disorder in a double-narrative that is both eye-opening and inspiring. Fussell and Matovic’s stories bring smiles and tears as readers follow them through their daily bouts with the disorder, from the maddening frustration of regularly spilling Corn Flakes to the heartbreak of scaring the family pet.

In accessible and simple terminology, Fussell explains the wide variety of different symptoms — seen firsthand when he attends the national Tourette convention — and discusses the latest in medical research and treatments for Tourette Syndrome, reassuring those affected by the disorder that all hope is not lost.

A remarkable story about a blossoming friendship and overcoming a debilitating condition, “Ticked” will inspire readers to look beyond the stigmas and peculiarity of movement disorders and see the real human struggle that lies behind those afflicted with Tourette Syndrome.

Here’s the deal

TS Awareness MonthTake it from someone who has been there: Seeing someone tic can often look/be funny, silly, unnerving, weird, etc. Sometimes, I’m not even sure what to make of myself — especially if I’m dealing with new tics or a new set of tics.

Every time I go out in public, I play this mental game of battleship. How bad are my tics today? How much am I able to tic in front of people. Do I let people see my old tics, let alone new ones? What happens if I have a vocal tic? All this and OCD, too??? It can be exhausting.

People don’t always know how to approach someone with Tourettes or what to do if they see a person ticcing, and that’s understandable. It’s nothing to be ashamed of, because often I — and others like me — am often more frustrated or confused then anyone looking in from the outside. So, what does one do when confronted with someone who has TS? Continue reading

Fun night brings together Tourette Syndrome families

Last year, my daughter took part in the National Tourette Syndrome Youth Ambassador program. We went to Washington, D.C., were my daughter had the opportunity to spend three days with kids from all over the country who had TS.

She will tell you that they were the best three days of her life. The kids had such a great time together. My shy daughter dropped me like a bad habit 10 minutes after we arrived. It was great to see these kids get the chance to be themselves and know that they would not be judged by the other kids because of their TS.

Over the past year, my kids have talked about how great it would be to get together with local kids with TS. We kept putting it off because it seemed like a lot of work and something always came up. A few months ago, the topic came up and we decided to make it happen. Our kids were very excited about it and their cousin, who was recently diagnosed, wanted to help too. We were all surprised how easy it was to plan. All we needed was pizza, music and kids.

472804_10151365985136965_1893663808_o Continue reading

Ask Dr. Ticcy: Will my child be born with TS?

Ask_Dr_Ticcy_Logo-238x250

Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

I have TS and I am thinking about having a baby. Will my child be born with TS too?

Thanks for your help,
Possible Parent

Continue reading

Proud to be me

941343_188828461271991_1392837637_nIn all walks of life there are many people who would have one conceal certain things about oneself in order to preserve some social fantasy that they keep in their head, some picture that they harbor of how people should and do view them. I have touched on this subject before, but my heart especially goes out to those who are made to feel ashamed of their disorder in one way or another.

This doesn’t just apply to those with Tourettes, but also those who have other medical issues that can be considered a social stigma. I’m not saying anyone has to broadcast their disorder or should be known by it, but, they should not have to feel as if they are an inconvenience.

I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS — some of these I have shared with you.

You may argue that learning of a person’s disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence?

When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one’s disabilities. Therefore, it has no place in the family.

To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your “TS self” and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.

Poetry provides a much-needed break

I am knee-deep in tic writing, and sometimes I just need a break.

Before my mammoth adventure into book writing, I had started a collection of poems — “just because” poems based on my kids and my zany family and fueled by love of anything Seuss and Shel Silverstein.

I don’t purport to have the talent of either of these brilliant writers, but I hope to finish my collection of work nonetheless.

Here’s one I wrote. Would love to know what you are doing to keep yourself busy. Send me to your websites if you have one, even if it’s a business. I’d love know you more.

The following poem was inspired by Stink. It’s a true story about something that happened to him in first grade. He still has his pink Scooby Doo umbrella (or as we like to call it, his “parasol”), and our family couldn’t find him more weird and charming for it God bless the independent thinkers of this earth! Continue reading

Misery loves company, and I love you!

The other day I was knee-deep in Chapter 9 out of 12 of my book. For reasons that have yet to be explained (other than sometimes stories take time, especially when you are living them), I am well on track to having this book done by the time my kids get out of school. Two years to get 9 chapters done (including an intro) and 4 weeks to finish the last 4? Sure. Like tics, it just is what it is.

Despite feeling excitement about wrapping this sucker up, I am feeling a bit of fear and angst, too. “What if no one cares? What if the TS community likes it, but the rest of the ‘special needs’ mamas out there think I’m a whack job? What if instead of being supportive I come off like nothing but a whiny freak job? And, the big question that begs for an answer: What if I can’t get an agent to back this?”

Such normal doubts and fears accompany artists of any kind, which is what makes their journey so exciting. With it, luckily, comes confirmation. For me, this came in the form of an email from someone in my private Twitch and Group:

Her son’s vocals are currently out of control.

As it turns out last month, so were my son’s. And, as I did, she told her kid to “Please Stop It Now!” and then went through a bottle of wine and, guess what, the tics are still there! Who knew. While I never want to see a fellow mother suffer, I saw this as having two meanings:

  1. I am not a nut job. We all go thru rough times. Thank God we can express it to each other.
  2. My book is on the right track. She called me right as I was finishing a chapter on the very subject.

Mamas out there, I want you to know that there’s a lot I don’t know. I care if you ever buy a copy of my book, but buy this: YOU ARE NOT ALONE. YOU WILL GET THROUGH THIS. I PROMISE.

That promise comes guaranteed, signed and stamped by the production house of Andrea Has Been There And Has Not Yet Been Committed to the Nut House.

Until next time, hug that ticker of yours today!