To the Mom/Dad of the Kid who has Tourette’s

He was eleven. Finally sitting in the front seat with me. It had been just the two of us for ten out of eleven of those years. I married Scott the year prior, Andrew moved schools, and we lived in a new home; left our cozy/humble 800 square foot apartment on Watch Street. It faded away in the rear-view mirror as we began our new family with Scott.

At this time, the tics were pretty bad; understandably so. He had been diagnosed with Tourette Syndrome at the age of seven, but big changes and anxiety always exacerbated his tics. He also suffered from pretty intense ADHD at that time, and we were in a trial and error status trying to figure out how medicine could help Andrew without too many side effects (and without significantly worsening his tics).

We were on our way to football practice; that pungent smell of football pads loomed in the car air. I rolled down the window a bit, felt the warm breeze, and glanced over at Andrew looking out the passenger side window. The energetic boy, typically regaling me with goofy trivia or funny excerpts from his day, was quiet and pensive.

The jerky head shakes were what prompted his coaches to finally come to me inquiring if he was alright. But that day in the car, it was the loud sniffing (quickly sniffing in and out) and the throat-clearing that piqued me. Knowing very well that handing him a Kleenex wasn’t going to help, I grabbed a Kleenex in a huff and said, “Here. Try blowing your nose. Are you OK?!”

I knew he was okay. My own sadness and frustration came out sometimes, and not always in a healthy/loving way…unfortunately. Directed AT him. As if he could help it.

And that’s when he said it…a pivotal moment in my life as a mother. No; a pivotal moment in my life.

He turned his head from the window and looked right at me. He spoke clearly and slowly:

“Mom, this is your issue now. Not mine. I’m ok with it. I’m ok.”

Sometimes I worry about writing of Andrew’s Tourette’s for fear I’m somehow exploiting my child’s challenges in life. But no. He knows. He knows how important growth in awareness needs to happen; he knows that other moms might benefit from understanding they’re not alone.

This is part of my life and story.

Scheduling and leaving work for doctor’s appointments, three different pediatric neurologists, up late doing research on possible long-term effects from certain medicines, calling insurance companies because they cancelled the only med that seemed to be working properly and how was I going to afford $150 for ten pills as a single mom making entry-level salary?, meetings with teachers to help them understand that he’s not trying to be disruptive…please don’t isolate him.

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And then there’s the guilt. The guilt of caring too much…watching how others at church may notice and stare; watching Coach put his hands on Andrew’s shoulders “you ok, buddy?”; watching from the car as he walks off ticcing away. Do other people fall in love with his tics the way I do? Likely not as much. 🙂

“Here, Andrew, try this! This might work!” And when it didn’t, did he feel badly about himself?

So here’s the thing. The thing we have to ask ourselves as parents. Are we projecting our own frustration and anger onto our children, in the name of love and protection, without even realizing we’re doing it? If so, yes, it can be harmful, but no…we don’t have to feel guilty. It’s normal. We are not alone.

But we must let go. The more of a non-issue it is to you, the more of a non-issue it will be to him/her. And I know that ain’t easy, Momma. Dad, I know it’s ultimately because you love him/her. But let’s face it…the less issues we have to deal with in this crazy world, the better we will be.

Not all moms have the luxury of their child kindly stating “Mom, stop. You might not be ok, but I am.” Not all parents have a child who can clearly articulate such insights. That’s why it’s important to not feel guilty and to share your feelings with loving/supportive people. And this goes for any weakness, illness or shortcoming we have as parents.

Whether it be your own anxiety/depression, over caring and/or overbearing about your child’s weight, just being impatient or unkind to your family sometimes because life is hard and you know they’ll love you regardless. Maybe you’re a little too involved in the athletic performance of your child. Acknowledge your behavior and seek support.

When it becomes more important to you, than it is for them…that’s the red flag.

Many times kids will let us know. “Chill out, Mom! Let me have fun. I’m enjoying this, I’m learning, I love my team…but you are the one making me not want to do it.”

However, many times they won’t say a word at all, but their behavior yells “back off.” Then it becomes our responsibility to transcend our own body, and be a witness to our own selves and our own behavior.

When you can tell that your behavior is irritating your child to the point of them withdrawing, avoiding, etc…a few questions come to mind:

Why am I behaving this way? I obviously want what’s best for my child, but it’s clearly too much. Is it because I care about what other people think? If that answer is yes, is it because I care about how other people treat my child or is it fear of my reflection as a parent? Maybe it’s a little of both.

This isn’t to induce guilt.

If you’re exuding an attitude or behavior of which you’re not proud  (even if just 5% of the time), you’re not alone. You don’t have to conceal the toughest of days. Parenting is the hardest job in the universe, and finding that line between caring and caring TOO much (or maybe even for the wrong reasons) is not only natural, but how we learn as parents. Isolating those feelings from your support system (or even from your own acknowledgement…aka denial) does no one any good. There is no such thing as the perfect parent.

Of course when Andrew taught me that day “Mom, this is your issue now…”, I immediately went to “What is wrong with me?! I must be the worst mom!” But in our hearts, we know better. And so do they. Trust that.

It wouldn’t be the last time I became overwhelmed and upset with his tics and projected frustration toward him. But those next times I quickly saw my behavior and was able to switch gears. I could see that he really was ok. I was able to see that in this moment, my behavior was based on how I was feeling as a mom: Bummed that he wasn’t “growing out of it” like I thought he might. They (the more severe tics) had been waning, almost not noticeable for months…and there they were…back with a vengeance. That anger and frustration and sadness that he would have to continue to explain to others in his adult life about these often very-disruptive tics made my mama heart hurt.

But wait…he’s fine. He has zero issue calling out his tics and helping others understand what they mean to his surroundings. He has zero problem making friends and building relationships. As a matter of fact, his friends often find his tics endearing and recognize them as just another thing that makes Andrew special. (He’s a talented musician, creative writer, and gifted actor, by the way!)

Don’t be afraid of your raw feelings and behaviors as a mom or dad. Take note of them. Reflect on them. Watch your child. Are they happy? Do they have friends? (And this topic; a breath-taker: Andrew tragically lost his best friend, Evan, to cancer in eighth grade. He didn’t find his “people” until high school) Are they able to help others understand their tics? Do they display a fervent love for sports/music/theatre/etc.? And one of the most important questions to ask yourself as a parent of a child with Tourette’s: Are they bringing up the tics to you? Or are you constantly the one bringing it up?

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These are tough questions. And it hurts sometimes. But don’t feel badly! And talk to each other about it. Find support. Remember, you are not alone. If you’re having a certain feeling, someone else is likely having that very same feeling.

But when it comes time to your child…keep it about them. Kids want to please us. (I know that’s a tough one to believe at times. Ha!) But when we are always seeming bummed out or disappointed/upset about something (something that they cannot even control like a mysterious brain uniqueness!), it hurts them.

Be happy with them.

And when I say ‘happy with them’, I don’t mean ‘pleased by them’. I mean “be joyful with them.” I’m not telling you to be their pal. You are still the parent.

But spend time with them, and be joyful! That’s all they really want and need. I can promise you that.

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24 thoughts on “To the Mom/Dad of the Kid who has Tourette’s

  1. That was everything I needed to read and hear!!! Thankyou.As a mother of a 9yr old happy Tourette little girl, sometimes (all the time probably) she is the one that remembers me not to grief with Tourette, but to reconize the joys and learning that comes with it.

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  2. I am guilty of so many of these issues. I catch my self always bringing the subject up,not realizing it only makes the tics worse. I have learned to take a few steps back and just let it go. I will admit it is very hard, and frustrating at times.

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  3. Awesome story…makes you really reflect on your own situation. Great job mom, Andrew and stepdad for taking on a roll that most often others turn away from.

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  4. Beautifully written! Definitely hit home. Wish I saw this article 5 years ago when my daughter was diagnosed with Tourette’s and yes she also said the same thing to me, not in the same words…she told me I was in denial and I had to get over it! I did change my tune after she said that but I admit I did a lot of crying (behind closed doors of course so she didn’t see me). Now my husband and I both think her tics are kind of cute :). My daughter is a beautiful 18 year old girl who will be off to college in a few short months, who loves to sing and as she says in her words….”I am lovely just the way I am”

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  5. As a mom who has Tourette’s, I can tell you that your son is right. I wasn’t diagnosed until I was already an adult. However, my own parents never made my tics into an issue. Occasionally, my mom would say to stop making faces, but then she’d ignore it. My dad believed my tics were the cause of something that may have happened in my childhood. But for the most part, they ignored my tics. It wasn’t an issue for them. And because of it, everyone in my family ignored my tics. They saw ME. At school, the friends I made saw past my tics. Guys I dated saw past my tics. Throughout my life, there were very few people who questioned my tics. I am now a proud mom of 3 (neither of whom has Tourette’s) and my tics are a non issue.

    So, my advice to all parents of kids with Tourette’s, as long as your kids are happy, don’t make their tics a constant issue, unless it impedes their way of life physically, of course. Your kids have to live with this for the rest of their lives. Some of their tics will go away, some will worsen over time, and they may develop new ones. I personally know how debilitating it can be to watch your child go through something that you can’t fix (my son has asthma and has been through some rough times with that). But for the most part, if you stop seeing your child’s tics, you’ll start seeing your child for who he is.

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  6. Thank you for this. You hit the nail on the head for me. I get so frustrated with my daughter’s tics. I’m constantly reminding myself that it’s not her fault, and it’s my job to make sure she is OK.

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  7. Beautiful and touching. Thanks for writing this. What a relief for him to tell you he’s ok with himself -the self acceptance must surely have grown from your love and acceptance as well as his own resilience. Inspiring 👊🏽😍

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  8. God how I wish I could have read this 13 years ago. It got to the point he went into crisis homes and residential living trying to get his meds right. I was unable to keep him safe. I thought what a horrible person I was to have to put my son here. Then the magic words: Take myself out of the equation. Single mom of 2, step back and do what is right for him. He was there a while, finally came home with the right meds. Now he works for the very same agency doing the same for others with only a few ticks and 1 med. Thank you for writing this. So much more we could say, we could write a book.

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  9. Thank you for this article! Our children have different diagnosis’s but your words ring true no matter what. We have been blessed with an amazing support group but I feel myself not leaning on them! Your article reminds me that they are there! They actually sent your article to me!

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  10. I have not gone thru this with a child but only with myself.I am92 years of age and had TS since childhood. Nobody even the doctors were aware of what was wrong with me.. My parents were immigrants and had no understanding of anything, however I grew up in spite of it. When I was in my mid fifties I lost my husband but it was just me and my daughter. I was treated by a bereavment therapist and she was the only one that sent me to the correct doctor and then I found out what was wrong with me. All those years without knowing but this disorder made me strong and I came thru it a whole person. I understand what you have gone thru and I commend you for your understanding of this disorder and how your son communicated to you.BS

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  11. Beautifully written!

    As much as I have to commend you for listening to your son and drawing all the right conclusions, I also have to commend Andrew for recognizing at an early age where the focus should lie. This is something adults with TS often have to get a grip on as well. Am I doing this to help myself? Or am I doing it to make the people around me more comfortable? It’s the same question with the same answer. Over time I came to the same conclusion as Andrew: I’m fine with how I am. I’m ok. If someone has a problem with me, it’s their problem to work on.

    Thanks for listening to Andrew. And thanks for passing this along to the rest of us.

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  12. Courtney, My name is Chris Mason. I have Tourette syndrome, OCD, and anxiety disorder. I had an anthology that I put together (Touretters) which includes 30 stories, including my own, that were written by or about people who have TS. My autobiography was also published. I read your story about your son’s battle with ADHD and TS and I loved it. I am currently putting together an anthology that includes stories written by people with all types of diseases, disorders, and syndromes, and I was wondering if you might be interested in submitting your story for that book and/or for the new edition of (Touretters). If you are interested in submitting a story or would like more information, please contact me at cmason@astound.net. If you are not interested, that is okay and I understand, and I wish you well with your future endeavors. Thanks, Chris Mason

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  13. Your words were spoken so beautifully and make me not fear the future. I was so scared of what is to come and now you have given me some sort of peace. Thank you for that!

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  14. Good post! What if she is not making friends very well due to her tics and controlling issues? She’s sad sometimes and not always happy because of co-conditions related and It’s hard because she loves people sooooo much. Glad to read from others.

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  15. Thank you for writing this it made me cry 😢 , my son is now 10 ,i first noticed at two he would do this facial grimace out of nowhere it was cute back then ( he’s still cute: ) . We’ve had all sorts of motor tics eye rolling , head flicking , hand rubbing , but now they seem to have got worse with the sniffing , throat clearing and head flicking all rolled into one it really upsets me and yes sometimes exactly what you said I was telling him blow your nose but I knew that wasn’t going to help either . I’m waiting on a specialist appointment for him in Perth Australia , going down the road road of medication scares me as he is also hyperactive and struggles with English at school and focusing .the teachers say he’s a good kid with lots of perseverance and he just loves sport and running I try to focus on these positives with him and am now not going to focus on the tics as it’s not good for my mental health or his ,Glad your son is happy in his own skin 👍👍

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