Thursday, August 25, 2016

Andy's Update

The summer got away from me before I could continue the blog, shamefully. After our trip to the mountains of West Virginia, we had a birthday for Andy, and I left for Summer Community of Writers at Chatham University in Pittsburgh to finish my MFA. When I came home, Shawn left for Boston for a week and we reconvened in Fort Myers Beach for ten days of vacation. I'd started to forget what my bed felt like. As with all summers, this one went quickly. I look forward to writing about it.

But for now, I find myself reflecting on the changes our family underwent this summer, changes I have not yet written about. It's difficult to find the appropriate manner in which to write about your kids, isn't it? I published an essay about Benjamin, and in it, I shared with the world both his propensity for calamity and, more importantly, my shortcomings as a mother. They are many, and in "Calamity Ben," I tried to connect with readers about my struggles. Humor writers derive pleasure from their own failures, in a way, because they see each disastrous escapade as fodder for another piece, and thus another way to reach out into the world. I think that's why I write about my failures, anyway. It's how I want to touch the world. My children have been the dominant force in my life for the last ten years; thus, they are a fount of inspiration. 

But now, I find that Andy is more than capable of telling his own stories. More importantly, he has a say in whether I may tell them. Often, when I take his photo, he says with trepidation, "You're not going to put that on Facebook, are you?" I don't know if he's yet reached the stage where he's embarrassed by me, but he's certainly aware that, as the child of a writer, he's on a stage of sorts. While things like Calamity Ben-fires and -knives still feel like fair game to me, the adventures and struggles of an older child are no longer mine to share. A great deal has been written lately about parents who share their children’s lives on social media. And while I have yet to decide precisely where the line is (and have done my share of sharing), I do agree that when a child is old enough to object to the idea of his presence on Facebook, he has every right not to be there.

That said, I've spoken with Andy about telling his story, here. He gave me his permission and told me it was about time.

In June, we learned that Andy has Tourette Syndrome. 

Andy's first tic appeared when he was four, I think. Like most kids, it began with a blink. I did the prudent thing and had his eyesight checked, and the doctor told me it was indeed a tic, a very common occurrence for a little kid. Many children will have a tic in their lifetime. But Andy's tics didn't disappear as he grew. Though the blinking came and went, at age 7—first grade—we began to notice other tics. Head jerks, often, and there was a grimace. Each time I mentioned it to his teachers they told me they'd never noticed the tics, and this relieved me a great deal. Nevertheless, I was aware of Tourette Syndrome and, being the anxiety-prone crackpot that I am, began to worry about it more than I should have. 

Tics cannot be controlled. It's difficult to understand, but it's been likened to the need to blink. It's an undeniable urge, and though patients can suppress them for short periods, they must come out eventually.

There are multiple tic disorders. The difference between Tourette and Transient Tic Disorder (TTD) is a matter of small degrees. Transient Tic is categorized by one or more tics that have been continuously present for longer than 4 weeks but less than a year. Often, the pediatrician referred to Andy's tics as TTD. He told me in a frank and calm manner that even if Andy did have Tourette Syndrome, there were far worse conditions with which to be faced. And while that might have come across as patronizing from another mouth, another person, when I heard him say it, I felt relief. I am grateful for our pediatrician for so many reasons, not the least of which is his ability to properly categorize the seriousness of a child's condition when faced with an adverse parental reaction. (Translation: He calms batshit crazy moms down.)

The tics continued to increase through 2nd and 3rd grade, though, and I admit my anxiety ran away with me. In my heart, I knew we'd moved beyond the textbook definition of Transient Tic Disorder, and that we were only one vocal tic away from a Tourette diagnosis. Looking back, I want to laugh at myself a bit. I spent a disproportionate amount of time worrying about something far beyond my control. I worried about Andy, and his feelings, and his education, but, if I'm to be honest, I worried the most for myself. How was this going to affect me? How hard was this going to be for me? How was I going to handle it? How was I going to get Andy through it?

What an arrogant ass, right?

Well, yeah, sort of. I spent a few months beating myself up for those feelings. And then, in May, when the first vocal tic appeared (a loud voice that sounded much like Fozzie Bear), my anxieties became realities. It was Tourette Syndrome, the doctor confirmed. And suddenly, all those hours of worry and dread no longer mattered, because the here and now had arrived, and nothing I'd obsessed about had any bearing on the next step. Whether or not I was tightly wound from three years of fearing what if, I still had to make one decision at a time.

I need to be honest about the preceding statement, though. That "one step at a time" stuff came from Shawn and my father: my two, rational rocks. I'm not a "one step at a time" gal. I'm the kind of person who sees a gray cloud and goes down into the basement to restock canned beans in the tornado shelter. I'm twelve steps ahead, well on my way to apocalyptic apoplexy, when really, all I need to do is make one small decision: What's the very next thing I have to do?

I never remember to think that way, though.

The next thing we did was to start Andy on a low dose of a medicine that may or may not help him. He does not take medicine for his ADHD, and we—Andy included—don’t like the idea of meds that aren't necessary. Often, such meds have side effects far more unpleasant than any tic. What he's taking now is a tiny dose of a simple drug that has the potential to calm physical symptoms, but the jury is still out on its efficacy. The thing about Tourette Syndrome is that it will likely worsen during his adolescence, peaking sometime in his teenage years. Often the tics wane as the child enters adulthood; sometimes they do not. Andy will always have Tourette Syndrome, but it's unknown how it will affect him, and how it will change over time.

And of course, I must address the elephant in the room: the cursing. Coprolalia, as it is called, is rare, affecting only 10% of Tourette Syndromers. It's the pop culture signifier of the disease. It's funny to some and it's a comedic favorite—Tourette’s Guy, I think he's called. The symptom pops up in movies and television sketches. Mention Tourette and that's what comes to mind. But the vast majority of Tourette patients will never utter a curse word unless they stub their toe. Alternately, some will repeat words they've heard (echolalia) or words they themselves have just said (palilalia). There's no way to know what tics will manifest in a patient. There's no way for me to know if Andy will ever have to suffer in that rare 10%. Truth: I spend an inordinate amount of time worrying about coprolalia. I have yet to tell him about it; he doesn't know that there's a cursing element to Tourette. I can't bring myself to share it with him, lest the very act of speaking the words strike the tic up within him.

It's a silly fear, I know. I have to take medicine too.  

On the first day of school, Andy asked me to come into his classroom and explain Tourette Syndrome to his friends. He's been with his classmates since he was a wee man of four. He's not the only kid with tics, and I've noticed that they aren't particularly aware of each other's tics anyway. When I ask him about other kids' tics, he just shrugs, as do they. The wonder of young children is their ability to accept whatever is presented to them as normal. 

When exactly do we outgrow that? When do we start to perceive each other's eccentricities and categorize them as flaws? How long before some mean-spirited jerk makes fun of my son?

It was permissible to worry about both Andy and myself. It was human. I've let myself off the hook, and in so doing, I've realized that Andy is far more capable of handling this obstacle than I ever could be. He thanked me for talking to his class. I worried all day that I'd said something that might embarrass him (What, me? Worry?) but he gave me a tight hug and said I'd done a great thing. His classmates were both accepting and non-nonplussed. They already knew Andy had motor tics and barely paid the movements any mind. Now, it is Andy's and my hope that they will understand any vocal tics that might manifest. 

Andy's Tourette Syndrome hasn't changed life as I feared it would. I make that statement with the caveat that we are lucky: many Tourette patients have behavioral difficulties, but Andy is the same sweet, loving kid he has always been. I try not to worry too much about those what-ifs; life is teaching me far more lessons right now than it is Andy. He is in a loving environment at school, blessed with teachers who will work with him in whatever capacity he requires, no matter how that capacity changes from week to week. We are slated to visit UPMC Children's Movement Disorder Clinic in November and have been taking him for cranio-sacral work that has minimized his vocal tics for up to a week after treatment.

It's hard for me, as a parent, to accept that something about my child's body doesn't function properly. This seems silly, on paper, doesn't it? Nobody's body works perfectly. Look at me: an autoimmune mess. My husband has ADHD and crackly ankles. My dad's feet turn out too far. And yet, no mother pictures her unborn child with an imperfection. No mother anticipates complications. The challenges come as a surprise to us. 

I do not believe that all challenges have hidden blessings. There is not a good, divine reason for every crappy thing we endure. Sometimes, shit just happens. That said, Andy's diagnosis has brought me closer to him in a way I'd been seeking for some years. It forced me to strip away everything but the present moment, what I have to do right now, for Andy, today. No, I haven't stopped worrying or obsessing—that's part of my own syndrome. But I do see the lack of value in worry, and this helps me to push past it as best I can. If my child must endure tics both annoying, humiliating, and sometimes painful, at least I am now better equipped to support him in our newfound closeness.

I don't write about Andy's Tourette Syndrome so that he can receive a pass or sympathy. I write about it because this is our family challenge, for now, and he seems unphased by it. No, he doesn't like his tics—he despises them. "I would give anything to get rid of these tics," he told me. But still, he's unapologetically Andy. The notion that Tourette Syndrome could hinder him even a fraction has never entered his mind. 

I hope that it never does. 


  1. I am in complete awe at your courage and candor in writing this, Laura, and in Andy's courage in allowing/encouraging you to speak to his class and post his story on your blog. Educating the public about diseases such as Tourette's (and fibromyalgia) is the most important thing that families who deal with these and other little-understood diseases can do. Bravo to you and to Andy for bringing this out in such a public way. I pray for both of you and for your family, that you may only encounter kind and understanding in the people in your lives. Count me and my family as number 1 on that list!

  2. Beautifully said-- please thank Andy for generously sharing his story! I know many parents and their children will connect with his journey, and that is such a powerful gift. Thank you both-- heck, thank your whole family :-)

    1. Thanks, Laura. Will do. Perhaps the boy needs a chicken.

  3. This is an extraordinary sharing of heart and bearing of soul. I had a similar situation that threw me into a panic state. When my second son was two and a half he was diagnosed with epilepsy. A diagnosis, I must say, was at the time preferable to the other alternative, which was a brain tumor. I too, suffered all of those exaggerated fears and anxieties, that can become disabilities in and of themselves. I kept a daily journal of his every move, hoping to assist in determining exactly what category his seizures fell in to. I read everything I could get my hands on, advised his teachers of his condition and explained that he was taking phenobarbital and an anti seizure med. Some understood, and others contended that he did a lot of day-dreaming. When He was nine and having a difficult time scholastically, I had him evaluated. It turned out that once he grasped something he had no problem retaining it, but the drugs were slowing him down. I began to slowly withdraw the meds and took him to a neurologist. After over seven years of medication, struggles in school, and what I considered after the fact, to be my own ignorance, it was determined that he suffered from hypoglycemia.
    You are to be commended for your healthy approach of naming and sharing both your reality and your fears.
    O.C.D. is the one common thread that weaves its way in and out of our families tapestry, so believe me, I can relate an sympathize.
    The fact that your son is not overly concerned attests to the fact that you are managing in spite of it.


    1. Thank you so much for sharing your story with me, Alice. I always appreciate the reminder that many people have already walked this road and found their way to the end successfully.

    2. Wonderfully written account of what's going on with you. Really, well done on the writing front. But also on the parenting front. This is no easy thing, and even though you are worrying and suffering in your own way, you are putting your kid and his needs first, and that's what makes you amazing. He is amazing as well. You're both doing great.
      Thanks for sharing this story.
      Love you!