Tourette Awareness Month!

Many times I have heard people say "do your kids (especially Baby Mermaid) really have Tourette? Just because she only makes funny faces or makes small movements. I have also had a lot of people tell me that we just don't understand what its like to have "severe" Tourette. My friend Joann put a lovely post on facebook today and I am just going to copy it  and paste it! She put it so beautifully and truly described how I feel about what my kids go through on a daily basis!

It's Tourette's Awareness Month, and I just happen to have a few kids who deal with Tourette's on a daily basis. Tourette's causes tics... and tics are REALLY the craziest things ever. They can be very obvious, or, as in the case of my kids, they may not all be noticeable to most people. But, believe me, they are aggravating and frustrating.

A tic is an urge to move a body part / flex a muscle / make a sound / etc... and once you get that urge, and you execute that particular movement/sound/flex/etc. that urge goes away for maybe 1 second. Maybe 1 minute. Maybe 2 minutes. But it always comes back - again and again! AND AGAIN! Sometimes tics start to cause pain - when you tighten a muscle/make a movement hundreds, thousands of times in a period, your body starts to complain. One day, we were counting my daughters' tics - and we started laughing (!!) after about 30. (Really? Oh my goodness! How can someone function with 30 different tics, in 30 different places in that little body???) All this sneaky pressure building up in various places, just waiting to be flexed. Or moved. Or shrugged. Flexed again. Or exhaled. Meanwhile, continue living, functioning, testing, reading, writing, socializing. Flex the foot. Tighten a leg muscle. Make an impossible sound. Tighten a muscle in a place that NO ONE else can even move, let alone tighten -- in a place in the body that isn't even designed for movement. And do it again. And again. Until you want to cry from frustration and pain, but you can't stop, because that pressure - that NEED - doesn't stop. Tics don't end when you are ready for them to end. They keep going. There is NO END. Until there is. Sometimes it'll stop, and a different tic takes its place. And it may come back. It may not. Sometimes you have a tic that is ALWAYS THERE, forever, like an annoying friend who won't go away. Other tics will come and go, but you'll have one that never leaves. It's just all craziness.

Take a timed test! Stress usually causes tics to ramp up, which can make it so difficult to take the test in the required amount of time (start test, answer a question, flex fingers, answer a question, put pencil down to tap finger on desk, flex fingers, answer a question...repeat! 1 minute to take this kind of test?). What about that tic that causes you to tap keys on the keyboard? No problem! Unless tapping the keyboard keys messes up your timed typing test. FRUSTRATION!

Tourette's is quirky. Do you know how hard it is for a kid (especially a teenager) to fit in when they feel self-conscious about themselves?

Add Anxiety & OCD & ADHD to the mix. And depression. And so, so many more things. Tourette's mixed with OCD? WHAT KIND OF SICK JOKE IS THIS??? This is enough to give ME anxiety!

And, Mom, watch your child struggle, be in pain, cry with frustration. You can joke about the tics. Give them silly names. Try to be understanding. Compassionate. Try to teach your child that it's not all about getting that timed test done in 1 minute (even though they are totally capable... totally frustrated because they know they are capable!). Cry when your child is not watching. Hug him. Try to help the teenager with the overwhelming anxiety and frustration. Hold it all together.

Tourette's is not the worst thing that could ever happen to your child. It is not fatal. It is not completely debilitating. If I had to choose between Tourette's and a life-threatening disease, I'd totally choose Tourette's. But, during this month of Tourette's Awareness, I thought I'd just post some of my thoughts. If you've read this whole post, then thank you. If you wonder if I sit and stress and freak about about Tourette's - no, I don't (well, not usually, anyway). It's just our reality. We don't moan and groan and complain about it. We just live it, and keep on trucking along. Sometimes we have to address it - like when I had to take my daughter to the chiropractor to get adjusted, or when another child lets out a sound that you didn't even know a human being could make & causes you to jump out of your skin (for the first 10 times... and then you either get used to it, or send them to another room to loudly tic away to their hearts' content). My daughter deals with her tics best when we talk about them. A son deals with his by completely ignoring them and not letting us address anything remotely related to ticing (ha! if you hide from it, does it go away???), and another son has the kind of anxiety & stress which makes me often wonder if I'm even capable of parenting these amazing, talented, brilliant, ticing children.

Monkey Mans Tourette

Today Monkey Man brought home a typing assignment from school. It brought a tear to my eye, and I thought I would share

Hello, My name is_____ I have Tourette Syndrome. It causes me to tic, (not the bug.) A tic is a movement or sound that I can't control. Tourette Syndrome is genetic. It is passed down form your parents. At school sometimes a teacher or a student gets mad at me for my tics, but I found that it is good to educate than to get mad at them. My dad and my two sisters all have tourette syndrome. I am super glad that almost everybody I know understands Tourette Syndrome and will help me if somebody gets mad at me. This doesn't mean I do not like to do stuff that most people do it just means that I sometimes have to tic.

Tourettes... How do you deal? Etiquette, etc.

So I have talked a lot about how my family deals with Tourette, but I was thinking back to the first time I went to our Tourette Group Meeting. How scared I was. What I was afraid of seeing and hearing. I was really worried about etiquette, etc.
The first group meeting I went to I left Baby Mermaid home, I didn't know if it was an adult only meeting,  more for care givers, or for kids also. At this point we had been diagnosed a little bit less than a month. I am thankful every day for this experience. I showed up a bit late, I didn't want to sit around and make small talk. As I walked into the room, I first noticed that there were no children there. Three adults sat it a circle, along with a fourth teenager. I thought to my self, good I can ask these people who have kids with Tourette all my questions and get all the answers I need. As I sat down it became very clear to me that adults have Tourette and still tic. Everything you read says that kids grow out of tics as they reach adulthood. The fact of the matter is that is not always true. I am sitting there thinking to myself crap, everything I have read has been a lie...which is still kind of true.  So as they introduced themselves to me, these strangers that have now become my good friends, my heroes, and my confidants, They all started ticing. I thought to myself, crap, crap, crap, do I advert my eyes, do I stare at them, do I talk over the top of the vocal tics, do I pause, pretend like everything is normal!!! I was so afraid. Even as I type this I cry, the fear was so real. I was so scared for my cute little Baby Mermaids future. How can I expect her to live a normal life with this non-normal problem?

As the meeting continued and the conversation focused on me and my needs. I learned a lot. These amazing people. Were normal. They had jobs, family, school, lives, just as I would want my darling girl to have. Some had served Missions for our church, at home and abroad. I finally figured it out as the meeting came to a close, the teen tossed his pencil at one of the other people in the circle, she just bent down and gave it back, he made a joke about that being a not great tic and at least she hadn't been stabbed. she laughed. and it was done. I thought to myself duh Heather, of course that's how you deal with tics. You treat someone with Tourette the same as you treat anyone else, with love.

So a couple of quick tips on meeting someone with tics.
If its a loud vocal tic, its O.K. to pause conversation for a second. That way everyone can listen to the conversation.

I find kids very curious about tics, I would much rather them be able to ask questions than have parents shush them. You know me I'm all about education. Also as a parent, don't make up answers, Lots of times kids will ask parents how did they catch that? and parents make up some crazy thing. I would much rather be able to explain that its something you inherit from your parents just like your blue eyes or your brown hair.

I was worried about eye contact at first, if you are talking to someone, looking them in the face, and they tic, it kind of feels like you are staring at them. Then I thought about that more, if I'm having a conversation with anyone, I give them the courtesy of looking them in the eye to show them I care about what they are saying, and so I can listen to what they say.

Its never polite to copy what people say and do.. Its never polite to copy someones tics.

Just seems like common sense now. So if you read this and learned something new, let me know. If you read this and thought, Gee Heather is a moron, you can feel free to leave that message also (however it is not very polite)

Ticing in the backseat!

On the way to school this week, My little Tourette kids totally cracked me up and I thought I would share one of the fun things about Tourette. So in my last post I told you about Baby Mermaids Tigger 2.0. Well Monkey man also has a full body jerk, its not quite as intense as Baby Mermaids Tigger, but it happens all the time. not just laying down like the Tigger. Also every Touretter at our house curently has an eye blinking tic. Well I talked about how some times see tics remind you of tics.(like doing someone elses tic)  Well the kids in the back seat started laughing and I looked back and one of them would tic which would cause the other one to tic, wich would start the whole cycle over again, so we jerked and blinked the whole way to school with a lot of laughter. I wished that I wasnt driving so I could have got a video. It just reminded me of my whole "enjoy the journey." Sometimes things are hard and lets be honest some times it sucks. but most time when you look at the little things you can find joy! well I am off to enjoy!

Tigger 2.0

Baby Mermaid has a tic that we call Tigger 2.0. Tigger 2.0 is a full body tic that looks a lot like a seizure. It caused her to knock out a tooth. When we moved into our new house, Baby Mermaid was so excited because she could use her bed again. We had been in a small rental for a while and she had been in bunk beds. So when she came to me and told me that she wanted to sell her bed, I told her that was fine, but I keep exploring the reasons why. eventualy she told me she was scared that she was going to get hurt.

 as tyou can see in the picture, her bed has lots of places to bang and hit when she tics. I told her she could easily sell her bed, but if she wanted to keep it that she should because we dont let Tourette stop us from the things that we love. So we put her bed up, and came up with some strategys to keep her safe. extra pillows, laying certain ways. One day she came in to my room, just a little mad because she had tic-ed and it had knocked out one of her baby teeth. I held her and laughed and cried with her. but guess what! she still has that princess bed, she loves it.
But this causes her a lot of pain. as you can imagine. She only does it when she lays down so going to sleep is especialy hard.
One day I was driving my car and she was in the backseat, I was driving down the freeway and my car started jerking like I was running out of gas. I looked in the rear view mirror and she was back there ticing away. My car was fine, Her tic just had so much power that it was rocking the car.

Wins and Losses

My main objective in raising kids is to help them grow into responsible, happy, self sufficient adults. Is that not every moms goal? So why is it so hard to see them become self sufficient? I always tell my Tourette kids that you are your best advocate. If you think someone is not getting "it", get in there and explain, educate, and be a friend. If you still have a problem, Mom's got your back!

 Yesterday was the first day of school for my kids. The first day of school is stressful enough. Then add a crazy disorder that causes you to say crazy things, make crazy faces, and lets admit it be a bit weirder than any kid wants to be, and you can imagine, my stress level is in exact correlation with my kids, multiplied by 12,000 percent.
When my kids climbed into the car on the way home from school, I was excited to listen to their journeys and experiences. When I asked Monkey Man if it was a high tic day or a low tic day, he responded with "Low. I only tic'ed about 5 times." Then he got really quiet and said "Hey Mom, do you know E___, well, he kept getting in my face and doing my tic. I asked him nicely to stop, but he wouldn't."
So why is it a big deal to do someone else's tic? When you have Tourette, it feels good to tic, just like when you have to sneeze and you hold it in for a while and then finally let it go, you feel a release. Well, when you see someone else doing your tic, it makes your brain say "Oh man, that looks like it feels good, lets do it too." Like when you see someone eat something delish, your mind says "Man I need that too."
My Mommy bear instinct kicked in, and I was ready to go solve some problems. Monkey Man said he tried to talk to him, so I just thought I would go talk to the teacher and get things worked out first thing in the morning before school. I asked him if he wanted me to go and talk to his teacher, he was like "OK."
 This morning I got up early, did my hair, put on a clean outfit, made sure I looked "OK", which let's admit, is a small victory in itself, considering today I go to Yoga as soon as I drop the kids off at school.  I didn't want to embarrass the small boy. So I park the car, jump out and head into the school. As I get to the front doors, Monkey Man stops, and is like, "Mom, just go home."
  I (feeling heart broken) say, "You sure? I'm right here, I'll just dash in and talk to your teacher."
 He says "No, I got this"
Gulp, I don't know what to do. Lets admit it, as parents, fighting battles is our job description. I think I just got fired by my 5th grader. Well, the youngest does not need me any more, I will just go get a job. As I stand there feeling totally awkward, Monkey Man says "Mom, there is E___,"
 So I make a fist and smash it into my other hand and say, "I'll just go take him out, This will only take a second."To which Monkey Man Laughs. I grab Him, (my son not the other kid) give him a hug and a kiss on the forehead. I'm not above embarrassment, it builds character! Turn around and walk away from the school. I call my husband and cry. I call my friend and joke at my pain. Go to my best friend/neighbor/boss/confidant (who everyone needs) and tell her my story, laced with lots of sarcasm, it's my media of choice.
She looks at me and says, "He is just doing what you taught him to do",
and with a tear in my eye, I responded with, "But, now I don't have a job." (I know stupid thought) She looked at me like I was off my rocker and said, "No, now you just have to wait, make sure that everything went well at school, and go from there. You're still back up."
Well duh! of course this is what I want! To be back up!

So Monkey Man got home from school. I asked how it went. He was like "Great, I talked to my teacher, she talked to E___. No one tic'ed in my face."
I'm putting this story in the Wins category. Things happened exactly as they should. My kid IS his best advocate. I had the same roll I've always had. As backup, just because I wasn't called up off the bench, I still did my job. Even though it felt like a loss, like my job had been diminished, it really was a huge win on the course of getting my kiddo to the end goal, of becoming independent, of becoming an amazing adult, which lets admit, is a step above my goal.

Public Service Announcement

After our cute little tic that disrupted our announcements in church. I texted our Bishop and we decided it was time for a public service announcement on Tourette.
The one I have given in the past goes as follows:

Tourette's Syndrome is a neurological condition that causes a chemical imbalance in the brain, our brain releases chemicals to tell us to move or speak, People with Tourette have an excess of these chemicals. this causes a tic. A tic is a sudden rapid recurrent stereotypical motor or vocal involvement… or in lay mans terms a movement or sound that your body makes that you cannot control.

There are 3 different kinds of tics,

Vocal Tics sneezing Sniffing and Monkey mans Singing (Coprolalia)

Motor Tics jumping, clapping, facial movements any movement that your body can make

and Tics of the mind (which is kind of like OCD)

What does this mean to you and me?

well for me, I have 3 kids with Tourette Syndrome, that just means that my life at home just got a lot more exciting. my kids are just like everyone elses, they make me Happy, Proud, Sad, Worried, just like everyone elses kids, but my kids also make weird noises, jerky crazy movements, and some times say Social Inappropriate words. But, I Love them even with all the “Tourette Craziness”

I know that Heavenly Father has blessed our family with Tourette, we have become a stronger family. one who has empathy for each other, and others. I am thankful for our ability to cope with this disorder that affects every aspect of our lives. even church

What does this mean to you?

That you guys get to go on this fantastic ride with us, when you are in church or other social interactions with our kids you may get to see the effects of Tourette, You may hear monkey man’s silly words, or see Baby Mermaids crazy faces… do we expect you to not jump in surprise? no, because we still do that, but we would like understanding. that our kids reverent behaviors may look different than yours..

I think in the past this has gone over pretty well. There are a few things that are a bit "controversial" and I will explain why I say these things.

The first thing that the Tourette community shys away from is the tic of Coprolalia. Why do we shy away from this? Because, traditionally everything you see about tourette includes coprolalia, when ever you see it in a movie, or you say my kids have Tourette, the first thing people think is that your kids are going to swear all the time. The fact of tourette truth is that only 10% of the Tourette population have Coprolalia. The reason why I explain that is because Book Worm has Coprolalia. Fun times.

The second thing that I usually get slack from is the use of the term "blessed our family with Tourette"  as far as I am concerned Tourette is NOT a blessing. If I thought it would do any good, I would pout an cry and ask for it to be taken away. But as it is not going anywhere, (as far as I can see in the predictable future) and it is something that will affect our family as far as the eye can see. I have to see the positive affects that Tourette has on my life. I truly do believe that the people that we have met are Amazing people. People who are strong in the face of adversity. Who do amazing things with an incredibly difficult disorder. People who inspire me. also that we have become a more empathetic family. We care about other peoples struggles, not just ourselves. We have become more protective, and kinder to each other, and we have learned to love each other even in hard situations. Are we perfect...Heavens NO!  anyone who lives by us will probably tell you quite the opposite. bet we are working on becoming better.

The third thing that I am needing your help with is because people say that I need more of a call to action. what things in particular do I want people to do? How can they help my kids?  What does the kind of help I am looking for look like? I am a crier, just putting it out there. So by the time I am done reading this the tears will be flowing. I need some concise points added of what things help. I'm really good at telling about Tourette, how I feel about Tourette, how we deal with Tourette. But telling others how to deal with it is hard for me!  So any help would be appreciated.