Updated: Apr 16, 2018
2015. The year the wheels fell off our bus.
In full transparency, we'd been having challenges with our younger son for 2 1/2 years before the official crash, but this was different. The throat clearing. The facial grimaces. The shoulder shrugging. The noises. The dropping down to his knees while walking. The arm flinging.
We were baffled. What was this and why the sudden onset?
Looking back, it all adds up. At two our son went from sleeping 12 hours a night plus a 2 hour nap to 6-7 hours a night and nap be damned. We battled each night. We fought, ignored, threatened, punished...all of the wrong things, but the "right" way to handle things according to the parenting gurus. Nothing worked.
The challenging behavior increased ten-fold. The Ferrari engine roared to life for hours on end with no relief. The impulsivity was dangerous. The incredible intelligence of this little boy was awe-inspiring. The insistence of always being first and having things his way was life-sucking.
Our quality of life as a family went down the toilet. We were stressed, exhausted, and frustrated. What were we doing wrong? Would this ever end? This was unlike any phase we had experienced before. For months this raged on and we began our journey, albeit not known to us yet, into the world of Tourette Syndrome.
At age 5, the first diagnosis came: ADHD combined type with suspected anxiety. The tics continued, changing often, but never gone. School was a challenge, especially with no one willing to listen to our concerns and agree to evaluate or accommodate our son. Things went from bad to worse as the year progressed and, in the end, we sold our house and moved to another district in hopes of finding their educational staff willing to listen and devise a plan.
At age 6, Tourette Syndrome was confirmed. Tics, both motor and vocal, had been present for over a year. Anxiety was added to the list of diagnoses. Kindergarten was a mess. An intellectually gifted child who couldn't perform. A child with a written communication disorder no one would acknowledge or accommodate. Disinhibition he could not control. Social skills that lagged behind his peers. Constant sensory overload that led to undesirable actions. A little boy, punished for his symptoms daily, whose self-esteem was eradicated. A young child who was grossly misunderstood.
We would travel to doctors at well-renowned hospitals in two different states and find they were not well-versed in Tourette. We would try supplements, dietary changes, essential oils, vitamins, chiropractic care, and counseling.
We would begin our journey into the pharmacological method of treatment. Options 1 and 2 had terrible side effects. Option 3 was tolerated, so we stuck with it. Options 4 and 5 had terrible side effects. Option 6 was tolerated, so we stuck with it. Option 7 may be a better fit than Option 3, so we switched. If Option 7 worked, Option 6 would possibly be able to work appropriately. Right now Option 6 and 7 are working pretty well together. Could you keep up with that?! Some days I feel like I can't either.
At age 7, we would travel to yet another doctor out of state. This time to a prominent neurologist, the director of a Tourette Center of Excellence, I met while at the Tourette Association of America's National Conference in Washington, D.C. More diagnoses would come: Dysgraphia, Sensory Integration Disorder, Obsessive Compulsive Disorder, Intermittent Explosive Disorder, and possible Restless Leg Syndrome.
A child with Tourette Syndrome and many of its common co-occurring conditions.
Not defiant. Not manipulative. Not an emotional or behavior disorder.
A neurological disorder.
Intellectually gifted. Lacking skills. Unmet needs. Misguided expectations and discipline.
This comes as no surprise to us.
We have been pleading with the IEP team for two years to reframe their thinking and develop an appropriate plan for his education. When it became evident this would not happen without a more thorough, in-depth, possibly litigious process, we made the decision to withdraw him and homeschool. We're in the process of an Independent Educational Evaluation and plan to use this information to drive our future educational decisions for our son.
2 months later, my other school-aged children would join us at home. Tourette Syndrome has a genetic component and a diagnosis is imminent for at least one more of our children, while another struggles with many of the common co-occurring conditions.
School is a challenge, especially when your disabilities are hidden and not fully understood. We could have traveled down the same path we've been on with our younger son with our older children, but this mama and her husband are emotionally spent. One may think homeschooling all four of our children would be infinitely more stressful, but that assumption could not be farther from the truth.
Being misunderstood and consequently shamed, embarrassed, and backed into a corner has taken a huge toll on our younger son. Being called out by a teacher repeatedly and watching your grades plummet because you did not write enough is demoralizing for a rule-following child. Silently screaming in your head when your writing doesn't look as perfect as you'd like and erasing so much not one single pencil is left with an eraser results in pent-up frustration and emotional melt-downs once returning to the safety of home. One whose challenges go unnoticed because they fly under the radar is extremely detrimental to one's confidence level.
I'm working to undo the mentality of "I'm not good enough" and boost the self-esteem in all of my children. Each one has their challenges, but in time they will learn to adapt and overcome. In turn, I hope their experiences will encourage them to be kind, empathetic, and compassionate human beings to others who may feel ashamed and embarrassed because of their differences.
While we've opted to stray from the beaten path, we're finding our way. Only time will tell the full impact this disorder will have on our family. Our journey is far from complete, but we've fallen, hit rock bottom, and are on the rise with open hearts, a new perspective, and the freedom to embrace our out-of-the-box family.
Tourette and its challenges will not define us. We are exceptionally unordinary and I wouldn't have it any other way.