William

October 1st, 2008 Tim Posted in SevenLakes Info |

(Nancy) After bedtime last night our son came in to our room nearly in tears due to a bothersome obsession that he would have a tic to gaze directly at the sun. He was afraid that he would do so until he was blind. He subsequently brought his telescope and binoculars in for us to hide because he was worried that he would have a compulsion to use those to stare at the sun the next day.

Our ten-year-old son, William, has Tourette Syndrome. Yes, I know what you’re thinking, “that’s where you jerk and yell out bad words.” That view, while prevalent in the media, is at times inaccurate (only 30% of people with Tourette’s ever exhibit coprolalia–literally “filth speech”) and is the tip of a very complex and ever-changing iceberg which generally includes co-morbidities including Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder.

As a Hispanic (well, 1/2 Hispanic) and a woman, I am stereotypically emotional. When it comes to William, my emotions run the gamut from selfish frustration and anger at the difficulties of dealing with the symptoms, fierce love and compassion for him over the complications Tourette’s adds to his young life, hatred for and fatigue of the illness, and confusion over whether an inappropriate behavior is deliberate disobedience or  TS/ADHD/OCD.  It’s hard to expect teachers to understand the ever-changing symptoms when we don’t always understand them.

A few years ago, I gave an in-service to the Alief ISD nurses on Tourette’s and related disorders. I described the typically lengthy process of diagnosis: the average age of onset of symptoms is 6 years old and the average length of time from onset of symptoms to diagnosis is 6 years. Even though I am a registered nurse, it took us three years: we took him to an eye doctor at age 3 for repeated blinking and to his pediatrician at age 5 for suspected repeated bouts of croup (we later realized it was a “barking” tic). Like many other parents, we proudly videotaped his end-of Kindergarten musical performance. In his case, this performance was punctuated by repeatedly punching the air with his R arm and a persistent neck twitch. It was after we took this videotape to his pediatrician that Tourette’s was finally diagnosed.

In that nursing in-service I said that after the diagnosis we realized that he was not “bad” (we had at one time wondered if he was without a conscience, due to co-morbid symptoms) or “crazy” (the time he had a tic to lick another student on the school bus was particularly troubling).

William is a smart, funny and charming boy who makes nearly straight A’s. He’s earned a red belt in TaeKwondo and enjoys K’Nex, Star Wars Legos, Mario Cart Wii and the Warriors books. He and some neighborhood friends recently organized an “orange juice stand” (we happened to be out of lemonade) that earned $10 for Hurricane Ike victims.

He can also be very impulsive and irrational and infuriating. It’s part of the neurological brokenness that constitutes Tourette Syndrome, which in itself is part of the universal brokenness that constitutes the world in which we live.

In the October issue of Christianity Today, Bill Mallonee states that “the Good News doesn’t make any sense until you know what the bad news is. The bad news isn’t that we have a few harmless peccadilloes and we screwed up on the way between high school and college or whatever–it’s deeper than that. It’s unrelenting.”

I long for the day when Revelation 22:3 (NIV) will come true: “no longer will there be any curse.”

[Tim and William approved this before I posted it. William tends to be an advocate for Tourette Syndrome education.]