Tourettetiquette

Today I want to talk about Tourette etiquette again. I guess you could also call it Tourettetiquette.  Today while at my Grandmothers funeral a close family member came up to Enzo and said, "I am so proud of you! I didn't even here you tic once! Were you not very stressed? I was dumbfounded, could not respond. Enzo explained that stress does not cause tics, but can cause them to worsen. Then we all got in the car and joked about it until we could all breathe again.

So let's go through what was said, why we were caught off guard. What I think they meant. And what would have been more acceptable. Tourette is a medical condition, of which the person has no control. You wouldn't be proud of someone for not sneezing when they had hay fever. But you could be proud of someone for doing awesome in school or rocking it at speech and debate. Just like we never say you were really good or had a really good tic day. Because then if you ticed a lot you would have a bad day, or be bad. But if you exchange the words good and bad with high and low, then it's not a reflection on the child. What should have been said was "Hey Enzo, have your tics changed? I didn't hear you tic at all." I hope we can all remember that all people, regardless of disability need to be treated with respect, and sometimes we need to think of wording, so not to say something offensive. 

*I was not going to post this, but in my Facebook timeline a memory popped up that a year ago today we were dealing with the Good/Bad comments. So just as a re-education please remember these rules when it comes to dealing with Tourette, or any disability.

I'm a judgy pants, and I am sorry!

I know that before I had kids, I had crazy ideas of Motherhood. I was one of those teens that saw kids at the grocery store with messy hair and runny noses and secretly mocked their parents. I promised myself that I would never have messy hair, snotty nosed kids. When I was dating Brian, his youngest brother was born. I remember going over to their home and having to be silent so that you wouldn’t wake up the baby. I swore that my kids would sleep through anything. Fast forward 4 years to the day I brought home my adorable daughter. We lived across the street from my Grandma and Grandpa, and if Grandpa sneezed across the street, in his house, it would wake the baby. She slept through nothing. I laughed and said that I had cursed myself for making fun of Brian’s mom and her silent baby sleeping patterns. Then, one day, with a couple of kids in tow, we jumped up and ran to the store. My youngest had an earache, and had an allergic reaction to the antibiotic shot they had given him. He was covered in hives, in his Pj's, I had not slept for a couple of days, and my girls looked like orphans. I looked back at my kids and realized that I had once again failed. My snotty messy kids were at the grocery store.
I then decided that I would not make self righteous assumptions about other people as parents. After all, we are just doing the best we can, being moms and dads. Its hard, and we all make mistakes.


Fast forward to my life with Tourette.... Yep I screwed up again. I met Moms in our support group and on the internet that HATED their kids tics. Moms who constantly complained about tics, wanted the kids to change their tics. I always felt like saying, the next time you feel like you need to breathe, try blinking your eyes and see if that helps. Of course, blinking your eyes is not going to fulfill the need to breathe just like trying to substitute one tic for another is not going to fulfill the need to tic. Wow, does that sound like one of those self righteous assumptions that I made as a teenager? Yep, it was, and right now I am eating a big slice of humble pie. I just had major surgery the first of December. Nothing went the way it was planned, and I have had a couple of complications and setbacks. My kids school is amazing and we have a week before Christmas and a week and a half after Christmas off. As most people will tell you, Christmas is the ticing season, and Monkey Mans Tics have gone crazy. So put me on house arrest, (something that I hate) and Monkey Man, out of school, plus really cold weather and lots of snow. His new tic is whistling songs. At first it was one Christmas song. But now it has morphed into songs from Zelda Ocarina of Time. Continually, constantly, without stop, high pitched, screechy, migraine causing whistling. I even dream that I have droids from star wars cleaning my house, and wake up to realize that its just the boy ticing. Now I must apologize. The fact that your kids tics drive you nuts does not make you a bad mom. The fact that each time they tic you cry in your heart makes you a mom. One placed in an incredibly hard situation. You can only do the best you can do. The best you can do is different for all different people. It doesn’t make one person better, or worse, it just makes us different. I promise to try to look at people and embrace the differences, to look for the better in everyone, to just not be such a judgy pants... and to apologize if you were on the wrong end of my judgyness.... I will try to not let that happen again.

Heather

How do you do it?

I was sitting in the Temple the other day. I had my nails painted with cute little teal support ribbons, and a lady leaned over and asked me what the ribbons were for. I responded that they were for Tourette Awareness. That I have kids with Tourette. Soon she leaned over again and said "you said kids? how many kids do you have?" I said that I had four kids three with Tourette. She leaned over again and said "Wow how do you do it? That must be really hard." I said nope, not hard, it just is what it is. We finished worshiping and went on about our days, but that simple conversation has really stuck with me. I keep wondering if I am negating my role as a mother with children with Tourette? If my role as a "Tourette Mom" is that much different than a Regular Mom. And if its different why I feel like its not that big of a deal?

So here is my rambling thoughts, I know you must enjoy them because you are still reading. Is my role as a "Tourette Mom" different? I have one "normal" kid, but I don't see a difference in the way I parent or mother. I love all of my kids fiercely. I would fight any battles for them. I would die for them. I would take any hardships away from them if I could. I loose nights sleep worrying about all of my kids, "Tourette and Non-Tourette." I also have to admit, that my non Tourette kid is easier, It may just be that she is an laid back easy kid? I don't worry that she is going to go to school and have a hard time with friends. That she will have teachers that are not understanding. That she is going to not have friends. I don't worry about those things because of Tourette. I don't have her come to me at night crying about sore muscles, or sleepless nights because of tic's. I don't worry that she won't be able to participate in the activities that she chooses. That she will never win the quiet game. I don't worry for her about what tic will be coming next. How we will deal with the next tic. All of those worrys are gone when I parent her. I worry about things (I worry plenty) but they are just normal kid things. So I am going to go out on a limb here and admit something I have never admitted before. "IT IS HARD TO HAVE KIDS WITH TOURETTE!" Wow just typing that makes me feel such relief. I do work hard to make sure my kids teachers understand. To make sure they fit in. I worry about all the normal stuff, plus all the crazy Tourette stuff! Its Hard it makes me tired it makes me cry and it makes me crazy with worry.
Now I have come to the conclusion that it is a big deal, that it is harder. That makes me frightened and intimidated. It makes me feel like being successful at this "job" is next to impossible. That may be why I have negated my role, that its not a big deal. I am sure every mom goes to bed tired, and still unable to sleep. Throw in the extra stuff, that really is big stuff, and no wonder I feel so tired. But then its still just my life, I cant undo it. I cant change it. I am still just a mom, doing what any mom would do.
I'm just a mom, doing what any mom would do. Is it hard, Yes. Is being a mom hard? Yes! Its hard if you have one kid. Its hard if you have 10 kids. Its hard if you have "Special Needs" kids. Its hard if you want kids. Its hard if you have "to many" kids. Its hard if you have Tourette kids. So yes its hard, but every mom goes to bed wondering if they have done enough. wondering if their kids will be happy, wondering if their kids will be successful. wondering if their kids will get married, have families. Wondering if their kids will find peace. So I guess that I am just a mom. Just a mom like every other Mom. Working hard every day for my kids to find peace and happiness. That's why I just feel like a regular mom. Because that is what I am. Just a regular mom, to extraordinary kids (all four of them)

Coprolalia

Coprolalia, What is it? Why do Tourette kids get it? How can you stop them from getting it. How do you deal with it?

Lets start with what is it, I love the definition of Coprolalia.

Coprolalia is involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks. Coprolalia comes from the Greek κόπρος (kopros) meaning "feces" and λαλιά (lalia) from lalein, "to talk".[1] The term is often used as aclinomorphism, with "compulsive profanity" inaccurately referred to as being Tourette syndrome.

Feces talk! How much better can you name a medical condition! It literally is crap talking! But then again, what is it really? It really is just a sucky thing that kids have to deal with. Its sitting in your family room with your cute kids while they say things that they don't mean to say, or would never say. Its guilt beyond belief, feelings of unworthiness, and being scared to leave your house. And why? Because of words? I always hear from people, Oh, Your kids have Tourette, do they swear? Well, the statistic that I say is that only 10% of the Tourette community has Coprolalia. But as life with Tourette goes on I doubt that number. Now with kid number 2 starting the Coprolalia journey, let me share with you my beliefs on the subject.

Why Do Tourette kids get it? My number one thought on this subject is that they worry about it. It gets stuck in their brains, and it happens. Let me tell you a Tourette story from a couple of summers ago to illustrate this point. We were at a water park with Baby Mermaid, just as we were getting on a slide that you lay down on your belly, and hold on to a sled, and race 6 other people down to the bottom. But the trick is you have to wait till they tell you to start and then push off with your feet. She said, “mom it would be really bad if I got a tick that I had to kick my feet, because then I might start racing before its time.” I just laughed it off, we raced a couple of times, and then went about our day. But before to long She had a kicking/Jumping tic that also included flailing her arms. We went back to the water park and she really did kick off to early (because of a tic). She was so embarrassed and upset. It was then that we made up the don’t think up worse tics rule. I really think that sometimes we get so focused on how “bad” something would be or how “hard” some tic would be that it just gets stuck in those cute little minds. Medically speaking there is no reason why people get tics. The only thing that they know for sure is that stress, anxiety, excitement, fatigue, sickness, etc make tics worse.

So the next thing I always hear from people is where would your kids hear those words? Are you kidding me? Have you walked down a hallway at a school, gone to a public place, or even watched a movie lately? I try really hard to keep things “clean” that come into contact with our kids. But even then you can't protect them from hearing “bad” words. I remember very clearly sitting in my work place with Mercedes, my oldest daughter who has Tourette, and the office manager said Cunt. I was a little taken back, because we cuss a bit at our house, it’s just how it is. But that is one word, that I would personally never use. I have a short list of words that I just don't like, and that one is on it. A couple of days later I was walking through Walmart with Mercedes and she just yelled Cunt. Almost as loud as you could say it. I looked over at my cute girl, and she had horror written on her face. I was heartbroken for her. We looked at each other, laughed, and completed our shopping. We got a couple of dirty looks from time to time. But its just a word, its not her choice, and it doesn't change who she is on the inside. Does it suck sometimes, unequivocally. But it is what it is.

I hear from people all the time, I can't believe you have 3 kids with Tourette. How do you do it? Do what? Love my kids? That's easy Moms love kids, Moms love helping, serving, doing things. It is part of our family makeup, it just is what it is. It brings us joy, laughter, heartache, and sometimes shame. Shame is the one feeling that Tourette brings that I refuse to feel! I refuse to let my kids feel it. That’s why I am writing this cute little story to the world. Words are just words. My kids have the distinct opportunity to not be able to choose the words they say. Does it make them bad? Absolutely not! Does it make them strong, beautiful, amazing people, that get to teach people about Tourette, and how lucky people are that they are able to choose the words they use. Yes!

So in conclusion, It’s just this wild ride that we are on. Its just Tourette. Its just another facet of our wonderful life.

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.

Tourette and Church. need I say more

So, Since I have only had 6 posts up to this point, and our tourette life goes back 4 years, you are missing a lot of info! Baby Mermaid was our first Diagnosed child with Tourette. Then Brian, My DH was self diagnosed. Which, in our tourette circles means that he has all the requirements for a tourette diagnosis, but why bother...(he is an old man). Then our sweet Monkey Man was diagnosed, We are LUCKY with Baby Mermaid because she just has Tourette, none of the comorbid disorders that go along with it. Monkey Man has the Tri-taverate of Tourettes, Anxiety, OCD, ADHD, He also has been diagnosed with executive Dysfunction. Then we were blindsided with a Diagnosis for Book Worm. wow! that is a lot of info in one paragraph!
Needless to say we have been doing a lot of Tourette. Its kind of a big deal at our house where 4 of the 6 have tics. I Have a friend through the Tourette Syndrome association named Whitney Fits-Flygare. She says if you have seen one kid with Tourette, you have seen one kid with Tourette. Meaning that Tourette looks different in everyone, and everyone needs different things when it comes to tourettes. Baby Mermaid has lots of physical tic's and needs very little advocation on my part. She is really good at explaining and people not having a problem with it. Yes some times she runs into problems, but she knows that I am in her corner. all she has to do is give a yell and I come running. Monkey Man is way more vocal in his tic's. He is still having a hard time standing up and explaining, and we have run into the problem of people not believing him. Our new ward (congregation) Is really great. but its always changing. Today in the middle of announcements he dropped the dirk...

Now this was exciting because we had a lot of visitors there! and lots of them didn't even know that he has Tourette, let alone why this kid is singing out in the middle of church! I would love to end this story with I just sat there and smiled and totally supported my kid. But lets get real, its loud! It echoed through out the chapel, People looked, I turned red. But I think its O.K. My kid didn't see my face, my kid just saw my fist come up for a fist bump and I put my arm around him and gave him a kiss on the forehead. I love this kid! and I hope he felt that, and I hope he knows how much I respect him for being true to himself!

A new start

When I started this blog I wanted to share with everyone my struggles as a parent with a child with Tourette. Man that is a mouth full. I know when we first got diagnosed, I goggled Tourettes and all I got was scary stuff of how my life was ultimately going to suck, and change, and be hard. I cried a bunch. Lets admit it thats a perfectly good response. I'm not a bad mom for that reaction. Even though at the time it felt wrong. but everyone goes through a mourning period for the change in your kids life. But as life went on and things got better I thought. I have a great Idea! I will have a blog that shows how life is hard, but fun, and manageable with all this Tourette fun! SO I started the blog with great intentions of posting our everyday triumphs, challenges, heartache, all that everyday stuff. but it all felt so mundane and I felt so inadequate in telling my story. but lately I have been thinking that that is exactly why I started this blog. The story of an inadequate mom, telling her story, which isn't big and exciting, just an real life account of one family's boring everyday life with Tourette. so if you will stick with me, and my just everyday mom-ness. We can enjoy the journey together!

Small Victories!

So yesterday we had a small victory! It seems small and unimportant, but I…. on with my story before my tears start again. Baby Mermaid won the quiet game! I know I didn’t even think about the quiet game when she got diagnosed. It seems so inconsequential, but to a 9 year old its everything! With her tic’s being crazy high the last couple of days, (thanksgiving was a dinner and coughing!) I asked her how she controlled her tic’s. She told me that in her class at school they have made a new rule! The only sounds that you can make are breathing and coughing! Even now as I think of this awesome teacher (who in my opinion should get teacher of the year!) and her love for my child, who understands the importance of small happinesses. So any way, life goes on. Things will be o.k. but for now, Things are great!

Just a little struggle!

K I just have to rant and ask for advice! One of Baby Mermaids tics is coughing. When we were first diagnosed with Tourettes I was relived that we had such easy tics and really they are, I don’t want to sound ungrateful because I am really thankful for the smallness of our tics.

However, I have noticed that when we go out to big events, especially if food is being served I start getting the “How could you bring your daughter to this party and let her cough on everything when she is soooo sick” We stress to her the importance of covering her mouth, but still people get visibly upset, I even had an adult cough back at her in her face! I was so upset but I didn’t say anything there because I knew the lady quite well and I would have never wanted to embarrass her in public, but then on the same had do I want my daughter to be embarrassed? Any advice would be great for me to know what to do!

Also on the same note I had some really cute shirts made up and she LOVES them! the first one is…

View Full Album

The second one is more to do with the coughing! Its a line from Pride and Prejudice! My favorite Jane Austin movie/book! but its not quite done yet so I will post pictures when it comes! by the way, give credit where credit is due! I got these cute shirts from Stitcheroos! Adrienne is great and works really hard to get you just what you need! She ROCKS!!!

Thanks

Heather

Telling Her Class

So, This week Baby Mermaid gave a presentation about Tourettes to her class. I was really nervous but we had practiced and gotten a power point ready for her. I was so proud that she got up and told everyone how things worked in her brain and everything, SHE DID A GREAT JOB!!!! Here is her talk! We got part of it from http://tskids4.tripod.com/TS1.htm

 

First, let’s talk about the brain. We all know that our brains are kept in our heads. Did you also know that the brain is kind of the BOSS of your whole body? The brain has to keep track of what every other part is doing and then try to fix it if a part isn’t doing what it’s supposed to do. If you want your hand to move over and pick up a glass of juice, it’s your brain that is in control of every movement that is needed to get that juice into your hand. But your brain is also responsible for things you don’t even pay attention to. Did you know that when you’re reaching for that glass of juice, your brain is also talking to the muscles in your legs and waist, making them move ‘just right’ so that when you do reach out for the glass, you don’t fall over? I’ll bet you didn’t even think of that!

So, I’ll bet if you try to think of all the things the brain has to pay attention to, you can imagine that it is very, very busy! Since the brain is so busy, it has helpers. You can think of these helpers as little messengers. The messengers carry the brain’s message to the right part of the body. For example, if the brain decides it’s time for the toes to wiggle, it tells a messenger “Hey, go tell those toes to start wiggling!”.

Sometimes people are born with TOO MANY messengers. After all the messengers have been assigned their job, there's a bunch of these messengers left over. They want to help too, but the brain says 'No, I've already got enough helpers. Go sit yourselves in the corner over there and occupy yourselves and stay out of our way."

Well, of course, the extra-messengers soon get bored and angry and decide they're going to help whether the brain likes it or not. So THEY start telling different parts of the body to do stuff. Now, these parts don't know there are extra messengers. They just know that when they're told to do something, they do it EVEN IF THE OWNER OF THE BODY DOESN'T WANT THAT PART TO DO IT.

If you don’t believe me, try to not blink as long as possible. Pretty soon the brain will decide it's time to blink and send down a messenger. The poor eye will be confused.

"Here's the kid I belong to telling me not to blink, but at the same time, here's one of the brain's messengers telling me that I HAVE TO blink. Well, I better listen to the messenger before the brain gets mad at me!"

So then, of course, your eye will blink because it thinks it’s doing what the brain tells it to do.

There’s a lot of silly things these extra messengers make me do. Most the time they make me cough, but sometimes I blink my eyes or clear my throat.

Now I want you to hold on to this candy and don’t think about it, just hold it in your hand, don’t think about how yummy it is…That’s how Tourettes is for me, when I try not to cough it makes my brain think about it more. Just like when you try not to think about the candy, your brain thinks about it more

Then she answered questions from the class and had a good time. I think that is one of the hardest things is just telling EVERYONE, It seems like every time we feel like we are just about over telling and getting on with our lives we have to tell someone else! I just face booked it to the world. I know that sounds insensitive but it was easier than telling everyone personally. well just my two cents!

Heather

What?????

I guess that it is best to start at the beginning! Well the beginning of our journey of Tourettes! It all started a year ago when Baby Mermaid got her glasses, I started to notice some eye twitching...blinking...face scrunching, I thought that her glasses must not be the right prescription or some such problem and we went back to the eye doctor. The doctor assured me that everything was fine with her eyes, and that the cause of the eye blinking was dry eye. We got our nifty little eye drops and off we went, but right then and there I KNEW that the problem was not dry eye. Well her eyes kept blinking and we kept putting drops in until the eye drops were gone and then we just dealt with the blinking. but as school was getting out this spring she started to sniff her nose, and then as the summer started she was clearing her throat and kind of growling. well, I had started to notice that the sniffing/blinking/growling was worse when she was stressed out so I took her into our pediatrician and told him what was going on and he said that he would recommend a psychiatrist to take her into, Next thing I knew we were sitting on a couch talking to a wonderful lady about the stress that was causing my 8 year old to growl. The whole time Baby Mermaid keeps telling me that this has nothing to do with stress. Then we went on our big family vacation to Washington D.C. Her Tic changed to coughing and I realized that my daughter was right, this problem was not stress it was something else entirely! Nothing like spending 3 days solid in a car with your family to notice a continual cough! So as we coughed our way threw the nations capitol, trying everything we could think of to stop her from coughing, until she told me that when she tries really hard not to cough she felt like she was going to throw up. At this point I put my arm around my daughter and told her to cough away! If you feel like you need to cough go for it!
So we get back from vacation and I tell the psychiatrist that it is indeed as Baby Mermaid has suggested and not a stress thing at all. we both leave our appointment Baffled about this problem. But as I lay in bed that night crying and praying for an answer I remembered a little girl that was in our theater group about 10-15 years ago who did the same face scrunching (that Baby Mermaid had started out with) that had Tourettes, So with this new in site I went to our doctors office prepared the next week, I told her that I was thinking it was Tourettes and she said that she thought the same thing. I left for the two of them to talk and went into the waiting room full of anxiety and fear, I felt like it was the end of the world. I guess that when you learn that your child's life is not going to be exactly what you think and as easy as you hope it would be, Your whole world seems to fall in on you. My DH was working swings and just getting ready to go in to work, So I texted him "They Think she has Tourettes, talk to you when I get home hopefully" waited for my daughter to come out with some tests (you know the ones, how often does your child soil themselves, and How often does your child think about death) Just to make sure it wasn't some other problem, and some info on Tourettes, and off we went!
We arrived home with enough time to give my DH a hug and off he went to work. That may have been the longest night in my life. I was devastated, and my best friend was not available to talk to and cry to. Thankfully my second best friend (my mom) lives less than a mile away and she came and we talked for a while, Then I went to work reading all the info that I had gotten. As I was reading (and crying) Baby Mermaid came up and climbed on my lap and asked me if she could read with me, I said sure and as we read the information, I knew and she knew that this is what we were dealing with! In fact she asked me if that's why she had to cough all the time. I hesitated and then said "We think so" and she was like "O.K. that makes sense." and off we went on our crazy ride called Tourettes