{"id":970,"date":"2025-07-28T06:10:24","date_gmt":"2025-07-27T22:10:24","guid":{"rendered":"http:\/\/veryauto.org\/index.php\/2025\/11\/22\/its-not-what-you-think-tourette-syndrome-awareness\/"},"modified":"2025-11-22T14:42:10","modified_gmt":"2025-11-22T06:42:10","slug":"its-not-what-you-think-tourette-syndrome-awareness","status":"publish","type":"post","link":"https:\/\/veryauto.org\/?p=970","title":{"rendered":"It\u2019s Not What You Think: Tourette Syndrome Awareness"},"content":{"rendered":"
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\"TS<\/p>\n

Today, I\u2019m taking a break from my usual DIY posts to open up to get a little personal. \u00a0It\u2019s not something I plan to do often, but I want to bring awareness to something that is very near to my heart. \u00a0Today I want to talk to you about Tourette Syndrome. \u00a0It is hard to know where to start with all of this. \u00a0There is so much I could share with you about Tourette\u2019s, and I will try to not bore you with too many details and facts. \u00a0What I want to do is inform you of a condition that many know very little about.<\/p>\n

Tourette Syndrome is one of those diseases that has been\u00a0the butt of many jokes. \u00a0It is not the swearing disease as so many think it is. \u00a0In fact, uttering of socially unacceptable words or phrases (coprolalia) occurs in less than 15% of people. \u00a0Movies like Deuce Bigalow, What About Bob?, as well as many comedians\u00a0have made Tourette\u2019s seem funny and have made many people (including myself) laugh. \u00a0Tourette\u2019s; however, is nothing to laugh at. \u00a0Here are some quick facts about this disease:<\/p>\n

\u00a0Tourette Syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. \u00a0It is estimated that approximately 200,000 adults in America are diagnosed with TS; however, those numbers could be much more as there are many who are not diagnosed. \u00a0Tourette\u2019s is an inheritable condition that emerges in early childhood. \u00a0It is more common in males than females and affects approximately 3 in 1,000 children. \u00a0The symptoms of Tourette\u2019s can me mild, or very severe. \u00a0To be diagnosed, one must have at least one verbal tic as well as involuntary motor tics. \u00a0Verbal tics can be anything from grunting, snorting, gasping, barking, etc. \u00a0Motor tics can be anything from slight jerks to more prominent muscle movements. \u00a0<\/p>\n

Why am I telling you all of this? \u00a0Because my son has Tourette Syndrome.<\/p>\n

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This cute little cowboy is our oldest son, Tyler. He will be 8 years old in less than two weeks and is finishing up second grade. He is the sweetest, most thoughtful kid I\u2019ve ever met. He\u2019s incredibly smart, almost too smart for his own good. He loves sports, riding his quad and dirtbike, hiking, and being with his family. All in all, he has always been a perfectly normal kid. \u00a0As if any boy could actually be normal;)<\/p>\n

\"tyler<\/p>\n

A little over two years ago, we started to notice some odd things happening with him. \u00a0It began with him rolling his eyes a lot while watching TV or playing video games. \u00a0He has seasonal allergies, so my husband and I assumed that his eyes must feel itchy or watery. \u00a0He would always say no when we asked if his eyes were bothering him though. \u00a0Fast forward two or three months and he started making snorting sounds constantly. \u00a0Once again, given that Arizona is now a terrible place for people with seasonal allergies, we figured he just had a lot of sinus drainage. \u00a0The problem was that he did it constantly. \u00a0We took him to the doctor who recommended allergy medication. \u00a0It didn\u2019t change anything.<\/p>\n

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Thankfully, after a few months, the snorting noises stopped. \u00a0Then\u00a0he started making other noises and facial movements. \u00a0Last spring, my dad was over one night and Tyler was going to bed so my dad went to say goodnight. \u00a0He came out and said \u201che\u2019s got Tourette\u2019s.\u201d \u00a0Me being the mature adult who has realized my parents aren\u2019t as dumb as I thought they were when I was a teenager said \u201cno he doesn\u2019t! \u00a0You don\u2019t know what you\u2019re talking about. \u00a0He has allergies.\u201d \u00a0My dad shook his head and said \u201cKatie, I work with a guy who does those exact same things and he has Tourette\u2019s.\u201d \u00a0Once again (mature adult here) said \u201cYou\u2019re wrong. \u00a0It\u2019s just allergies, dad.\u201d<\/p>\n

As the months passed, his facial movements and noises evolved and he began to have more exaggerated movements. \u00a0He would make fists and bang his thighs or kick his legs. \u00a0We kept asking him why he was doing those things and he could never give us a reason why other than he \u201cjust needed to.\u201d \u00a0It was that summer when I began to realize that maybe my dad was right and that Tyler did have Tourette Syndrome. \u00a0My husband still wasn\u2019t ready to believe that was the case, so I never really pushed the idea too often. \u00a0After all, his tics weren\u2019t really that bad and weren\u2019t a problem at school or socially. \u00a0<\/p>\n

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Fast forward once again to early this year. \u00a0His tics began to get worse. \u00a0We could always count on him to drop one tic before picking up a new one, but now they were compounding. \u00a0He still usually just had one or two verbal tics (at this point loud, screeching gasping noise sometimes followed by squeaking or clicking), but now he also had two or three motor tics. \u00a0I called my father-in-law (a psychologist in Houston) and asked him what his thoughts were. \u00a0He agreed that it could possibly be Tourette\u2019s and we should have him checked out. \u00a0By this point, my husband had also accepted what was going on. \u00a0It was (and still is) a hard time for us\u00a0because we were both doing what we could to be strong for the other one when all we really want to do is cry our eyes out.<\/p>\n

Tyler\u2019s verbal tics were becoming more noticeable at school, so it was finally time to call a neurologist. \u00a0That was a hard phone call to make. \u00a0Listening to the automated recording saying \u201cyou\u2019ve reached the Barrow Neurological Institute at Phoenix Children\u2019s Hospital\u201d caused me to hang up the phone sobbing. \u00a0I didn\u2019t want to make that phone call to make an appointment to see a doctor and have them tell me there was something wrong with my kid. \u00a0What parent does? \u00a0I broke down again when I finally had the courage to speak to the receptionist. \u00a0I\u2019m pretty sure she\u2019s used to moms crying over the phone, and she was very kind and patient.<\/p>\n

We had to wait a long, agonizing month to see the neurologist. \u00a0In which time, Tyler\u2019s verbal tics were getting to be so noticeable that people kept asking if he had asthma. \u00a0Even Tyler was asking what was wrong with him. \u00a0We didn\u2019t want to tell him too much\u00a0yet without a diagnosis, so we would just say that we didn\u2019t know yet and we would find out when we saw the doctor. \u00a0When we did finally see the neurologist, he was ticking away as if on cue. \u00a0After a lot of talking and us answering her questions, she gave him the official diagnosis of Tourette Syndrome. \u00a0As much as I was prepared to hear that diagnosis, I still cried right there in the office.<\/p>\n

The good news was that we finally were able to explain to Tyler why he made his noises and banged his elbows or kicked his feet, etc. \u00a0He said he felt better knowing that there was a name for it. \u00a0It doesn\u2019t make it any easier though. \u00a0A little boy in his class had started teasing him about his noises. \u00a0I was furious when Tyler told me about it (as any parent would be), but kept my cool in front of him. \u00a0He said he wanted to talk to his teacher about it and when he did, she made sure that all teasing stopped right then and there. \u00a0I can\u2019t say enough how her support (as well as others at his school) has helped him and us during such a difficult and emotional time.<\/p>\n

He still has fears that kids will laugh at him because of his noises though. \u00a0There is nothing worse than your child coming to you crying asking \u201cwhy can\u2019t I just be normal?\u201d \u00a0I thank God I had the strength that morning to keep it together and comfort him. \u00a0Right now, we can\u2019t answer all of his questions. \u00a0He wants to know when his tics will stop, or if he will grow out of them. \u00a0He wants to know if they will get worse or stay the same. \u00a0Unfortunately we just don\u2019t know. \u00a0It does get worse during puberty when hormones are going crazy. \u00a0That is about all we know and there\u2019s no way to predict just how it will affect him. \u00a0All we can do is pray that he will grow out of it. \u00a0If for some reason God has a different plan for him, then we will continue to pray for his strength and perseverance. \u00a0<\/p>\n

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Later this month, we\u2019ll begin seeing a psychologist that specializes in Tourette Syndrome and tic disorders. \u00a0I don\u2019t know what we will get out of these visits, but if there are ways to help Tyler\u2019s anxieties about his tics or help him realize that he\u2019s not alone, then I will do whatever it takes. \u00a0We\u2019ll also be seeking out support groups for kids with Tourette\u2019s. \u00a0We think that having Tyler meet and hang out with other kids who also share his condition will help him to feel less self conscious. \u00a0We\u2019re not at all interested in medicating him at this point. \u00a0His tics are not severe enough to risk the side effects of the medications. \u00a0Even his neurologist said that she wouldn\u2019t recommend it until it does start to affect him a great deal.\u00a0<\/p>\n

If you have every wanted to learn more about TS, one of the best resources I found was this book.<\/p>\n

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It is a true story about two completely different men with Tourette Syndrome. \u00a0Their paths crossed by chance and they became lifelong friends. \u00a0One of them had tics so severe that he was virtually bedridden (as much as one could be in his condition) and had, what was at that point in time, an experimental brain surgery called Deep Brain Stimulation. \u00a0It translates to him having a pacemaker of sorts put\u00a0into his brain to deliver shocks to relieve his tics. \u00a0I don\u2019t want to give away the whole book, because it really is a great read. \u00a0Even if you don\u2019t know anyone with Tourette\u2019s, I encourage you to read it. \u00a0<\/p>\n

I also purchased this book, written by a 9 year old boy with Tourette\u2019s. \u00a0When I read it with the boys, I think Tyler felt some comfort knowing he wasn\u2019t the only kid out there with Tourette\u2019s. \u00a0Garrett, our 6 year old, could care less at this point. \u00a0His brother\u2019s vocal tics\u00a0get on his nerves sometimes, but he knows that Tyler can\u2019t help it and loves him regardless. \u00a0He says he will always stick up for his brother and will never let kids make fun of his tics. \u00a0I couldn\u2019t be prouder of him for that.<\/p>\n

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Tomorrow marks the start of Tourette Syndrome Awareness month. \u00a0It is from May 15th to June 15th. \u00a0I am trying to bring awareness to this condition, not to make you feel bad for my son,\u00a0but to help people better understand what Tourette\u2019s really is. \u00a0It\u2019s not a bunch of people running around shouting profanities. \u00a0It\u2019s real people who would give anything for a moment of stillness. \u00a0It\u2019s people who suffer daily with pain and fatigue. \u00a0It\u2019s kids who wish they could just be normal. \u00a0I would give anything to help Tyler feel \u201cnormal.\u201d \u00a0For now, all I can do is try to help others better understand what he and many others go through\u00a0and to help him realize that it\u2019s okay to be different and unique.<\/p>\n

Here are two\u00a0videos that are very helpful in understanding what Tourette\u2019s is and what it looks like. \u00a0Like a snowflake, no two people are the same. \u00a0Some have very severe tics, while others have milder ones. \u00a0As guilty as I feel for thinking it, I am so thankful that Tyler\u2019s are not severe. \u00a0Socially and academically he is doing very well. \u00a0There are many others who are not as lucky. \u00a0The second video features children with the most severe forms. \u00a0It is emotional and not easy to watch, but it definitely gave me perspective.<\/p>\n

I Have Tourette\u2019s, But Tourette\u2019s Doesn\u2019t Have Me<\/p>\n

The Darker Side of Tourette\u2019s: A Documentary<\/p>\n

Thank you for bearing with me throughout this lengthy post. \u00a0Like I said, I don\u2019t plan to post like this often. \u00a0My goal with this is to educate\u00a0others\u00a0and bring awareness to this often misunderstood condition. \u00a0It\u2019s not a joke. \u00a0It\u2019s not something that people can really control. \u00a0But like we tell Tyler, it\u2019s okay. \u00a0God makes everyone unique in their own way.<\/p>\n

Katie<\/h2>\n

\u00a0<\/p>\n

{This post contains affiliate links. \u00a0The opinions about these items are strictly my own}<\/p>\n

Linking up at these parties:<\/h4>\n

Lil\u2019 Luna<\/p>\n

\u00a0<\/p>\n

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