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.