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)