Help via Facebook....thanks Jerry!

Recently I joined a facebook page entitled "Tourette's Syndrome Support Group". Some days it really helps me and gives me hope, other days it sends me to tears. There was an exchange I recently had with a man on the page that has been sticking with me a lot and I wanted to share it on my blog so that I could easily refer back to it when needed and maybe other's will find it useful too...


I had posted:
Check out this graphic I found. It states that 55.9% of people grow out of it?! Has anyone ever heard of this statistic? Does anyone know of anyone who has outgrown their tics?!
http://www.canadadrugcenter.com/images/tourettes.jpg

Then a ways down the comment thread, a man named Jerry came on and said that some people's tics fade, but his did not. Other people commented and told him how sorry they were that he still struggles with them. They asked if he has tried anything that has helped his tics.
 
Gerry Responded: exercise and meditation help. Tried acupuncture for awhile which seemed to help. But stopped doing it. I guess the bottom line is I don't care anymore. I've twitched for the last 45 years. I'll twitch for the next 45. So what? Life is good.

Another woman, Cindi, commented right after him and said:I love your attitude and it really does come down to how YOU feel about it. Thank you for providing feedback for the newbies

me: Jerry, what a great attitude!

Jerry:  It's not fun but it's not fatal! I would rather have TS than stage 4 colon cancer or something.

Me:   Jerry, if you are not Christian this may offend you. It's not suppose to, just think of it as my "opinion" about my beliefs. I still want to say it please.

It's all about perspective isn't it? I keep trying to remind myself of that. I broke down recently and was literally bawling out a prayer about our son. He's already been through so much, how much more does he have to endure? Why him? And the words came to my mind "Mary prayed the same prayer for her Son. "B" is my son too, I am aware of him, I know his struggles, and I am here for him as much as I am here for you." I bawled a lot that night.

He was born at 30 weeks 5 days, died at 23 hours old and was brought back to us, he 's had bleeding issues (takes after me), asthma, allergies (just finished three years of weekly allergy shots, poor kid), he didn't speak until he was 3 (has been in speech since age 2 1/2 and is doing great now), and now his Tourette's. I was just so overwhelmed that night with all he has already overcome and what he will have to deal with the rest of his life. He is our third of four children. He is AMAZING! I just wish he didn't have to deal with so much. His young life has already been so hard!

But as I prayed I was given insight that truly helped me. I was reminded of all the blessings he does have. I was reminded how he could be so much worse and have far more problems than he does. I try to count my blessings every day and to teach him to do the same. Thank you for being an example of that Jerry, God bless you.

Jerry:  I am not Christian and also not offended. I am sorry about your son's issues. I truly believe that Tourettes brings great gifts with it. At this point if I had the opportunity to be free of tics, I would refuse that opportunity for fear I would also lose the good things in my life. Things that I think are inextricably connected to my TS. Your note was sweet and I thank you for it.

Me: That really intrigues me. Could you please explain more about what you mean?

Jerry: I am smart, funny and creative (humble, too !). There is evidence to back this up: I have 3 post graduate degrees, I have published an ABC book (If You Were an Aadrvark: An ABC Book Starring Mammals, available at www.xlibris.com, search for Gidner in the online bookstore), and tend to make people crack up. I am always coming up with ideas. I have a restless energy that lets me get a lot of things done. I have no evidence for this other than my gut instinct, but I feel like my creativity and energy is linked to my TS. I would take a lot more tics than I have now to keep that other part of me. Because thats the part that fulfills me. Also - in a less direct way - I have a very thick skin. No one can say anything to hurt me, because I heard it all, and worse, on the elementary school playground. When college roommates mimic your tics to your face, what your boss thinks of you is somewhat less damaging. I am not saying it has all been fun. I have been horribly mocked and discriminated against. But I think you can be a prisoner of Tourettes or it can be a prisoner of you, and I made my choice a long time ago. All that being said, I don't mean to minimize it. Lots of kids have it worse than I ever did, or have other co-morbid conditions that make life hard, like OCD, anxiety, ADHD, etc. Both my daughters have OCD and one has anxiety. Those are both more debilitating conditions than my TS ever was. Because it actually affects how THEY function. Again, I don't mean to minimize it, but for some people with TS, the biggest problem is not that they are ticking, because that by itself doesn't affect brain function, but the reactions of the people who see them and are offended by it. I know. I have been subject to those reactions my whole life. But my opinion is that I tic, I can't help it, and anyone who doesn't like that can suck it.

Me: Well said. Thank you so much for sharing your story and insight with us.

I will never meet Jerry. But he has left a lasting footprint on my path to understanding Tourette's and how to help my son. I am grateful to strong individuals who are an example of resilience, like Jerry is. Thank you Jerry. 


Other responses to my initial question of  can people outgrow their tics? 
  
Samantha: The neurologist told us (just on Friday) that a large percentage of kids outgrow their tics during their teens - that the tics intensify through their pre-teen years and then fade away, but that the other difficulties many with TS face (like the OCD and ADHD) do not tend to fade away. We are very new to this diagnosis - our son is 5 and the neuros have been telling us for 3 years that his tics were seizures and that he had a whole slew of disorders to go with it, as well as cognitive delays, etc - but I do distinctly remember him saying that the tics are often outgrown.

Jordan:  I've outgrown mine for the most part other than a few head movements

Josie: My son is almost 16, was diagnosed with ts and adhd at age 7. His tics have become very mild and now only tend to flare when he becomes emotional. He isn't even on any meds for it anymore.

So, no matter what happens to B, he will be fine. There is a possibility that he will outgrow his tics, that is my ultimate hope. But if that is not God's plan for him I will be okay with that too. I will support him and encourage him to pursue his dreams. He is so smart, so athletic, so amazing, he truly can do or become anything he wants. With or without tics. 

"I. Am. AWESOME!"

B has always had an amazing attitude. He would say things like "I. Am. AWESOME!" And "today is the BEST DAY EVER!" It was wonderful and it was contagious. He hasn't said those things in a while and I really miss it.

He wasn't born "normal" or "average". But he was born "awesome"! He has been given so many gifts to guide him through his trials. Each one of our children have been given amazing gifts to guide them throughout this life. I hope each of them can find it within themselves to say in the mirror each morning, "I'm not here to be average, I'm here to be awesome!"

I don't think anyone is "normal", what does it mean to be "normal" anyway? There is so much diversity in the world today that I do not think anyone can truly tell what categorizes a person as "normal". There are plenty of "average" people in the world though. What categorizes someone as "average"? I believe it is someone who just lays own and covers themselves in the label the world has put on them, someone who essentially gives up trying to be anything but what others say they can be. What they are allowed to be. An average person makes decisions based on what fits in "the box". Who draws that box? The world, other people, satan. We have the eraser. God gave us the eraser. We can erase the box, and let our minds and imaginations take us places. Let our hopes and our dreams lift us up. Let our uniqueness, our personalities, our trials and our blessings motivate us. We can erase the box of average and be awesome!

That is my hope and dream for each of our children.