When Tourette Syndrome Doesn’t Feel like a ‘Syndrome’ at All

Whenever I talk about my son having Tourette Syndrome, I feel weird about the word ‘syndrome’.

By definition, it’s not a derogatory word.

Here’s the definition:

Syndrome – a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.

Fair enough.

So why the negative feelings when I use that word? I’ve reflected on this topic, off and on, for years. I’ve concluded that it feels ‘off’ to me because once we acclimated to life with Tourette, it didn’t feel like a syndrome or disorder at all.

To take it one step further, it can even feel like a blessing. If (and only if) you’re open to receiving this. If you’re constant to the proverbial ‘beating head against wall’ trying to fix it and making it go away, shushing him/her (which could be inadvertently shaming him), referring to motor tics and noises as ‘weird behavior’ to other people when talking about it, it’s fair to say that you may not be ready to accept TS as a blessing. And no guilt, please, for not being ready. Hear that part? No guilt, please.

This takes time. It’s a shift in thinking. A total shift. It’s like that moment when the hidden dolphin picture finally comes off the page…”I’ve got it!! I can see it! Oh wait, it went away.”

It takes practice to not only receive the blessing, but also to hold on to it and make it last.

One minute you feel it, the next it’s flown away, and you’re left with anxiety and fear again. But if you focus, really focus, on accepting your child’s syndrome as a blessing, you may be shocked at the subsequent fortunes that continue to happen; all because you shifted from syndrome to gift.

So what in the world am I talking about? How can I put such abstractions into actual examples to understand?

I can’t speak for your own experience and potential, and I’m fully aware of the varying degrees of severity with TS, but for me (us), our son’s TS began to manifest itself as a TB (Tourette Blessing) in 5 main ways:

    1. When we recognized the correlation between TS and a passion/talent for creative arts: music, writing, acting (recognizing this both in general through the media and also directly in our son’s life) He began writing songs and playing guitar when he was 10 years old. His first song was called “my stupid little hand disorder”, and in retrospect, we realized it was symbolic of what he was going through at the time of accepting his tics and sharing them with others. The lyrics to his song ended with “my stupid little hand disorder…it…feels…nice.”, and we learned that his tics felt normal and good to him…they were PART OF HIM. Over the years, I came to deeply believe that the blessing of TS doesn’t stand alone. It comes with other pieces and parts; gifts, if you will. For Andrew, these gifts were an amazing talent in music and theatre, and not so ironically, this has become his passion in life.
    2. When we finally drew the parallels between TS and extreme compassion for other humans. This is real, folks. I’m not saying compassion isn’t inherent in many of us or even in him, regardless of TS, but something happened with his core character as he grew up on the outside looking in. He was always having to take a step back and observe a situation before reacting, and he became quite good at this. Through this process, he learned at a very young age how to see the whole picture; how to look at someone’s behavior and think ‘there is more to this story’, so I’m going to give this person the benefit of the doubt and show them compassion. Not ironic that this fit in with our familial belief in Christianity and the unprecedented Law of Love. Hello!! Blessing
    3. When TS became the vehicle for him to learn how to protect his self-esteem and gain confidence. He wanted others to understand. He stood up for himself and not only educated himself, but began teaching his peers around him what it was like to have TS in ways they could relate. These are life skills he will always have
    4. When you realize that your child’s TS is pointing a finger at you to become more introspective about your parenting and the reasons behind your concerns. As a parent, it’s too easy to become consumed by all of this; especially when they’re little. The whole process (taking many years), taught me invaluable life lessons on parenting. How to let go. How to give your child more credit. How to bite your tongue. The list goes on forever, but every lesson is even more valuable to me as I have three more children growing up behind Andrew.
    5. When it becomes distinguishable that it was none other than his TS (and ADHD and other challenges) that solidified the core of your family; brought you together tighter and closer than you could have imagined because you’re facing the world and fighting for his success, independence, acceptance and happiness together as a family. And oh…by the way, it sure does feel like a blessing that we have each other!

It takes practice, and practice takes time. But when you see the dolphin transcend from the hidden picture, try to hold on to it a little longer each time.

Before you know it, you’ll have it! That peace and acceptance and love and gratitude is all yours.

Practice makes perfect.


Stay home mom, you’re doing the work of God

The other day: I was running my bootie off with two little girls and breaking my lower back lifting 30 lb toddler everywhere I went. It was time to be somewhere, twenty minutes ago, and of course little man pooped right when everyone was heading to car. “Put them in the car!”, I say to self as I’m running around, “gotta get ’em into the car.”

Even among the many beautiful times where I smash my lips to his chubby cheeks for his millionth kiss, or get eye level with her while holding her hands to tell her it’s okay; even among these times, I have difficult snippets.

As a stay home mom, life isn’t divided into good and bad days. It’s divided into little snippets…blissful ones and wayyy non-blissful ones.

In this particular moment, I did not have smile on my face. I wasn’t feeling ‘happy’ in this snippet. Was I feeling sorry for myself? Nah. Did it mean I wanted to go back to work and quit being a stay home mom? No. Did it mean I was wishing I had a different kind of life since this can be ugly (like literally poop/puke ugly) at times? Nope. Did it mean I carried guilt around for feeling pissed off and not happy in many of my snippets? Definitely yes. Yes to the guilt, which I realize is on me.

But I wasn’t bitching, wasn’t complaining (lie, I texted Christine 4 x’s), wasn’t feeling not fortunate. It was simple: I was going through the motions, looking and feeling like a wreck and not being particularly chipper about it. That’s it. Thatisall.

Unassuming is a suitable word regarding what was about to happen.

6YO, 4YO and 18MO packed in car with a movie on (I shed the guilt about TV and movies years ago) while I finished gathering everything necessary for a typical/daily car trip.

19YO son home from college sitting at counter eating rando pile of conglomerates (he did help with kids earlier so I was semi-tolerating his loud chewing) and watching me run around in circles to gather all the crap: sippy cup, binky, shoes (I put them in the car without shoes…it’s a thing), bag of goldfish crackers (to throw, one by one, into backseat while driving), Norwex deliveries, purse, diaper and wipes, where’s my phone? (louder) Where’s my PHONE?!?, sunglasses (no, that will come later during one of the five subsequent ‘oops I forgot something’ run-ins) I’m almost ready to jump into the driver’s seat!!

I quickly clean up the peanut butter smeared onto wall before it gets dried and cakey. I do a quick glance into dining room mirror and pause for second – …what the…When did this become ok?! Who said this was acceptable? No one. Absolutely no one said “It really is okay to look like this. You can totally get away with this. Especially in public. You should go out in public.”

I gotta keep moving, and as I’m sliding out the door (again), 19YO says,

“you know…you’re doing God’s work.”

(insert the sound of a screeching record player)

I stopped in my tracks like Marty McFly when Biff calls him chicken, and I turned around,

“What did you just say?”

With a twinkle in his eye and a sweet smile, (and mid-chew obviously),

“I said you’re doing God’s work, Mom. You really are! You’re amazing.”

My body turned into one giant spaghetti noodle. I almost crumpled to the floor. Somebody was taking it all in, actually noticing what I was doing. And despite all the %&@!&’ing curse words from stepping on Barbie shoes and Legos and getting baby poop wiped on me and feeling like I smell like actual shit all day long, he thought I was doing the work of God. And told me so.

A 19YO stopped what he was doing for a hot-second to tell his mom to take it easy. “You’re doing fine. More than fine.”

Is this a big deal?!


This made my life.

And many of you will totally get that.







Accepting My Son’s ADHD Diagnosis

Something about seeing your small child running up ahead of you, over a hill, a flowering field, a long beach…

Something about that picturesque view of their small body surrounded by a vast gorgeous nature and their sweet/innocent laughter getting fainter as they run on ahead…looking over their shoulder and giggling at you… “catch up mommy!!”

Just takes your breath away.

Another notable recurring memory is holding that five-year-old’s tiny hand as you cross a parking lot; you do that little “squeeze”, and they do it right back; their palm and fingers precariously gripping on to your hand through a busy parking lot likens them to the dream every parent has for their child; a very basic dream: happy, healthy, normal…and you in total control of their care.

Flash forward to a second-grade classroom. You’re supposed to be a fly on the wall (yeah right) during an observation assessment subsequent to that of a pediatric psychologist and an attentive principal popping head in.

For the third year in a row, you’ve been told that your child is “different” than the others; overly active, can’t sit still, intermittently disruptive and even times obnoxious/inappropriate.

You’re not sure what that means. “Oh they must say that to all the parents.” could exemplify some likely untrue head-talk you’ve been shushing lately because you know something needs to be acknowledged; “he’s just a boy! A busy/excited boy!”, you say; head talk that’s been circling in your brain for years.

Do they see his wonderful/sweet side? Am I the mom who isn’t owning up to my child’s behavior? Maybe you know/love/trust his teacher (I did!) but still feel that it’s all wrong. You have nothing to compare it to, and his school desk has been moved again; this time to an isolated spot, and that rips your heart out.

So there you sit in the classroom.

We need not break down the arduous dynamics of what is happening to all parties (child/parent/teacher) during that observation. I may have even repressed it too far to provide a fair regurgitation.

But the diagnosis? Well, for ADHD, a diagnosis is never black and white. They don’t say: “he has been diagnosed with ADHD.” The language from the psychologist sounds more like this: “I continue to believe Andrew would probably derive benefit from a stimulant trial.”

More head-talk: “What does this mean? Does he have it? Do we really know? As a parent, how am I to make a decision about medicine? How long was the doctor in the classroom? I need to remember to make a list of these questions for the Dr. appointment! Is a drug trial going to zombify him? Can he get addicted? What’s IN the drug? Does the medicine build on itself over time? What ‘benefit’ will it provide? What does that even mean? Could all of this be due to his diet? Could it be the fact that I’m a single mom and he goes back and forth to different homes? Is he too smart, and he’s just bored??”

A mom’s thoughts go on forever; and ever and ever and ever and ev.errr.

You have to eventually calm down and start somewhere. So let’s look at the ‘diagnosis statement’ or the bottom line from the psychologist (being mindful that this was taken from a much longer write-up):

“I continue to believe Andrew would probably derive benefit from a stimulant trial.”

That succinct statement reflects an array of important facts:

1. The words “I continue to believe…” This communicates that the doctor has been watching the child for a while now. The diagnosis wasn’t made over one classroom observation. Nor was the assessment made by observation alone. As a parent, it’s your job to make sure that first, you have a doctor you know/trust and second, that he/she is taking time to get to know your child. It’s not the doctor’s job to determine WHEN the diagnosis is made. It’s your job to provide your parental hopes/expectations to that psychologist. I was in my mid-20’s. I wasn’t married. This was a learning curve for me.

2. The word “trial”: This isn’t a contract written in blood. It provides some room to breathe. “Relax, Courtney!…this whole situation is pliable.”

3. The word probably in “he would probably derive benefit”. Get used to this word in the world of ADHD and Tourette. It’s just real. We don’t know what is going to happen with medicine. I would constantly hear other moms chattering “I’m not going to turn my kid into a science project.” It always made me feel badly for trying medicine for Andrew.

I regret carrying any guilt from that. I regret accepting someone else’s chatter as part of my own identity as a mom. And about that science project statement…It absolutely IS a science experiment. Does there have to be guilt and negativity wrapped around that? NO. Medicine is science. All medicine; everything about medicine is based on science. The very essence of science is trial and error.

If your child’s life has been repeatedly and negatively impacted by their daily behaviors and actions, they deserve your earnest attention. How that manifests in your family is up to you as the parent, but never feel guilt for not excluding a drug trial. Ignore negative trash-talk.

In my experience, what I can tell you is that there is no silver bullet.

I don’t have thee solution.

Drug therapy? Gluten-free diet? “Eliminate red dye! Let boys be boys! Don’t turn them into zombies! We need to fix our education system! It’s the teachers lack of empathy.”

I mean we could go on all day with the constant rhetoric; rhetoric indigenous to the ADHD labels and conversations taking place not only in the coffee lounge at work, but deep in your own head at night when you can’t sleep; wondering if you’re making the right decision to put your child on medicine. You toss and turn, toss and turn…

This whole thing can become overwhelming and exhausting. I found ways to mentally wrap it up into a box at the end of the conversation or before bed or whenever I found myself going down paths of anxiety, and tabling it ; Just setting it down right there and walking away. It was safe, and I could pick it up later.

ADHD is real. That, I’ll sign my life on.

It sucks. As a child and as a parent. Coping with it on a daily basis is a moving target. Try to lean in. Try keeping an open mind that therapy and/or medicine, eating better, reducing chemicals/dyes, and respecting both our children and teachers all could be working together to provide relief/comfort/support. And not just to the child, but to the entire family.

As we are improving our education system and our diets and our toxin exposure, life is happening right before us. Sometimes we need to get help right there in the moment. We want our kids to have the ability to learn in the best possible capacity.

Am I suggesting that medicine is the answer? No. And looking back, I’m not even sure continuing medicine as long as we did was the best solution for Andrew. What I do know is that it was an ongoing assessment over time.

But don’t get too wrapped up in it all.

Remember that little one running up over the hill or into the horizon of the ocean. Remember holding his hand across that busy street and that little *squeeze* of his hand.

Take a step back, and put all of this in that box for awhile, and walk away from the table.

Grab a worn-out old baseball glove and go play catch with your boy.

The Fake Palm Tree from Walmart

Order fake Areca Palm tree for living room since I keep killing real ones. Find one for $163 on Walmart.com. Website says can return to local store if needed. Sweet. It comes, and Scott and Mom and Andrew all make fun of it. I try to give it a chance but know deep in my heart that it’s ridic. So I box up, get receipt from my email and head off to Walmart with 2YO Macie.

Find stray cart. Put huge/awkward tree in cart and hold Macie on hip and walk from back of parking lot pushing cart/holding her and get out of breath. By time I get into store I’m huffing and puffing. Walmart greeter thinks he’s funny and actually imitates my panting. WTF. When I acknowledge him by giving him ice queen psycho pregnant lady death stare, he says “My DEAR, why didn’t you call?!” But still doesn’t come up to help us or assist in any way.

I make it to Customer Service desk. No line. Whaaat? Awesome! Hoist tree over counter, give him receipt, etc. He enters order number in computer and the dreaded “ohhhhhh….” comes out.
“Ohhh what?!” I say.
“Welllllll, this was actually purchased through a third party called ‘Christmas Central’ so we can’t take it back here at the store.”, he explains.
“Um…what is Christmas Central?”
(Macie is currently lifting up her shirt showing strangers her belly button)
“It’s a third party”, he says.
“I didn’t order from Christmas Central. I ordered from Walmart.com. There was zero anything about Christmas Central or not being able to return it” (Voice elevating, getting sweaty, shed jacket)
“Well, would you like to call Walmart.com or Christmas Central? We’re not really affiliated with them.”
“You’re not really affiliated with them?”

The rest is a huge blur. Managers came over, Walmart.com was called, flagrant arm movements, I continued elevating my voice: “What is Christmas Central? You call Christmas Central!”, the line for customer service was wrapping outside of the room. Macie was now laying on the dirty floor and rolling around like Madonna.

I was late for being surprise reader for Kenna’s preschool and still had to pick up cookies. So I said
“I’m leaving this dumb 163 dollar tree here that looks NOTHING LIKE THE WEBSITE PICTURE BY THE WAY because I don’t have time to carry it back out to my car right now. Mister, I know this is not your fault, and I am sorry for this spectacle, but whose fault is it? Mine, I suppose for ordering from Walmart.com and actually thinking it was Walmart!?! I will be back to pick up this dumb tree later.”

“We cannot guarantee it will still be here.”



I Do Not Work Out in Sexy Workout Clothes

I do not work out in sexy workout clothes. If you do, I’m not putting you down. I totally envy you; and one day…maybe one day, I TOO will be turning heads in that workout facility. But today? No.

Is it because I haven’t showered? Like it might not quite match how I feel inside? Look at that hottie in the bright orange sports bra. Oh wait, she’s leaving a wake of coffee breath and baby poop….annnnnnd bacon? Is that fried bacon I smell?

Maybe it’s because when I put that fifteen year old way-too-tight sports bra on this morning (obviously to go under my oversized 5K tshirt), I said out loud to self
“is my boob seriously gonna smash out the BOTTOM of this damn thing?”

Could be due to the fact that I’m on day three of putting BedHead dry shampoo to the test. The stakeholders of BedHead have chosen me to be part of a focus group gathering qualitative research on how many days a woman can go without washing her hair before she feels just completely abhorrent. No, I’m not really. It’s my own little test.

The possibility that it’s my jiggly butt doesn’t elude me.

Maybe it’s because I don’t want to miss out on that wow-factor I get upon returning to the child care room. “Wow, who’s *this* lady? Fresh smelling, washed hair, brushed teeth, maybe even a little bit of makeup…this certainly is NOT the woman who dropped the kids off.” Let’s not get crazy…I’m still wearing active wear of some sort and makeup consists of my half Dr. Spock eyebrows being drawn in, a little mascara and some lip gloss. Dontchu worry, my ensemble continues to not make sense.

Not sure, but it could simply be the fact that somewhere between child one and child four I stopped caring about my appearance during everyday routines. And I don’t mean like “oh, she doesn’t look awesome but still socially acceptable”. I’m talking “oh this mama is a hot mess!”
Overtly atrocious.
Basic fundamental hygiene and grooming took a major hit with number four.

These possibilities are endless. I predict it’s about 3+ years before I start wearing hottie workout clothes. (Shrugs) Or never.

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.


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?


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.