Tourette Syndrome Awareness

I’m always surprised when people tell me they didn’t know we had a son with Tourette Syndrome.

Really? You can’t see the “mother of an atypical child” bags under my eyes? 

But then, I’m really pleased. Because just as I’m not identified by my label as a “trauma survivor” or my mental health diagnoses, I’m so grateful that my son isn’t identified by his neurological condition.

I also am cognizant of not exploiting Isaac or his suffering for entertainment purposes (though he is absolutely hilarious sometimes), or of telling his story without his permission. He is a 15-year-old young man, and as funny as it is to post pictures of my one-year-old sitting in the toilet, his different level of self-awareness makes sharing his life a bit more sensitive.

 

That said, it is officially Tourette Syndrome Awareness Month!

 

 

May 15 – June 15 (which is atypical and completely appropriate) is a month set aside by the Tourette Association of America for education and advocacy.

And this condition deserves a little spotlight, because it has been one of the most misunderstood conditions we have ever had to deal with. Isaac has been officially diagnosed for eight years, and we are just now starting to grasp the full ramifications of this condition.

I can’t tell every Tourette story, but I can (with his permission) tell ours. I could write an entire book on what mothering Isaac has done in me. I can say with absolute certainty that my parenting is forever changed because of this boy.  From expectations of myself and him to humility and forgiveness; from faith and our pursuit of healing to the junk that his suffering brought out in me; from my identity to his… I would say the crucible of family is one of the hottest refining fires on planet earth. And I’m honestly so grateful.

The first time I heard the words Tourette Syndrome was in the movie, “What About Bob?”

Bob Wiley: You ever hear of Tourette’s syndrome? Involuntarily shouting profanity?

Dr. Leo Marvin: It’s exceptionally rare.

Bob Wiley: S*%t-eating son-of-a-b*!%*h! B*$#@%d, d*$%@*-bag, *&^t, numb-n*&s, d&^%head, B*&^%H!

Dr. Leo Marvin: Why exactly are you doing this?

Bob Wiley: If I fake it, then I don’t have it.

 

At six years old, when Isaac first started demonstrating tics through involuntarily hopping, nodding, sniffing, and clicking his tongue, we were assured that coprolalia (involuntarily shouting profanity) is a rare symptom of Tourette Syndrome that has been over-exaggerated by Hollywood.

But, I mean, go big or go home, amirite?

It started innocently enough. Isaac would say “wiener dogs!” at random times. (I found out later, he got this phrase from the Curious George movie. Go figure.) I remember being in the Target frozen food aisle, and Isaac, at the top of his lungs, shouted “Wiener dogs! They smell real bad and they pee on your lawn!”

I was, in good motherly fashion, completely embarrassed and worried what people would think of me and my parenting skills.

 

 

It wasn’t just the outbursts, though. Isaac also displayed extreme ADHD symptoms (and NO it’s not a made up American diagnosis. UGH), as well as irresistible impulses to perform physical tasks, such as cartwheels in the parking lot and kissing adults’ bellies (they were at eye-level). No matter how many times we scolded, threatened, punished, bribed, rewarded, ignored, or encouraged his behaviors, he continued to “disobey,” sometimes putting himself into dangerous situations or causing himself physical harm.

And our disapproval frustrated him to his core.

He became angry and explosive, throwing screaming fits that would last literally hours. And the more he escalated, the more I escalated – my own shame and insecurity and trauma-responses multiplying the situation exponentially.

By the time he finished first grade, my son was suicidal. And we were desperate.

We saw psychiatrists and psychologists who performed test after test. We tried a slew of medications and saw a behavioral therapist who called himself “coach.” We tried herbal supplements and essential oils and specialized diets, but at the time, he was one of three kids and I was just finding my footing after a 7-month residential program. Also we were flat broke. Like, six-figures-in-medical-debt broke.

 

 

Sometimes, parents are criticized for medicating their children. “They” say parents only medicate their kids for their own sanity and convenience. But when you walk into your son’s room to find the carpet soaked in blood because he beat himself in the face with a shoe during an out-of-control, feral “tantrum” that you felt compelled to ignore by sending him to a time-out, because that’s what all the books say to do, you start considering all options. When he outright physically attacks you and then crumples onto the floor with desperation in his eyes saying he wants to kill himself, it is way past convenience. Sometimes I want to punch “they” in the face.

The medication did help with the ADHD symptoms – to an extent. He was able to gain some space between thought-impulse-action to consider a consequence instead of just acting out because the idea came into his mind. He was able (miraculously and by sheer genius-level-intelligence) to keep up with school work and progress with his classmates. In fact, he didn’t qualify for an IEP, because his grades were really good. In middle school, he tested into the High Ability Learners program and became what is called 2-E (twice-exceptional), meaning he had both giftedness and behavioral issues. Ugh.

In fifth grade, though, we transferred Isaac to a new school and he picked up a whole new lovely vocabulary.

He went from saying “bic” and “wiener dog” to spilling out some of the most heinous insults I have ever heard in my life. At one point, he said something so sexually explicit to another classmate that his school called in a specialized therapist to evaluate him (and our family) to make sure he wasn’t being abused. Kurt and I were at a total loss.

Fast-forward through years of prayers and healing ministry, through cutting out food dyes and trying two dozen different mediations, through individual therapy, deliverance ministry, psychiatrists and medical doctors, to the part of the story where our pediatrician recommended us to a Tourette Specialist a 3 hour drive from our house. It offered me the first glimmer of hope I’d seen in 6 years.

 

 

I left that first appointment with Dr. Coffman in tears, because for the first time the mystery that was our son was understood, validated, normalized, and equipped with a plan to move forward.

Dr. Coffman explained the four-faceted manifestations of Tourette Syndrome including emotion regulation, executive function, involuntary movement (including the voice and tongue), and sensory processing. He also explained co-occuring conditions like OCD, ADHD, Anxiety, ODD, and Depression. He explained that Tourette Syndrome is a neurological condition, not a behavioral condition, and as such needs to be treated like a medical issue, not a behavioral issue.

Breathe. Air.

We started to see Isaac in a new light. He wasn’t some disobedient, defiant, stubborn, manipulative kid who was seeking attention and trying to see what he could get away with. (Though there are bits of all of that in all of us, if we’re honest.) Isaac was a young man fighting against his own neurons firing out of control, feeling as helpless against the onslaught as we were. He was doing his absolute best with the limited resources he had, and our encouragement and support was what he needed far and away beyond our stern discipline.

And in my mind, it made all the difference.

I know this is long, but I wanted to give you a glimpse into our world for a moment.

Because the bottom line is, there usually so much more going on in someone’s life than meets the eye.

We have to hold out grace for one another, because even if our behavior is difficult to deal with, we cannot pass judgements on the condition of someone’s heart with a passing glance.

Hilary Yancey, mother of a medically atypical child, said something that resonated with me. She said our responsibility as parents is to identify each one of our child’s needs – the things they each need to move uniquely through this world – and figure out how to supply them. Isaac’s needs may be different from Annabelle’s, and Anorah’s needs may be different from Vienna’s, but isn’t that the essence? Isaac may have more scheduled appointments than my other kids, but his needs are no more pressing or important than each of my five kids’.

Isaac and I are best buds. He makes me feel things I never knew I could feel – on every end of the spectrum. And I couldn’t be more proud of my son.

Tourette Syndrome. Awareness. Check. ❤