A few years ago when my son (who was then 7) was first diagnosed with Tourette’s Syndrome; I wasn’t quite sure what we were preparing to get into.
Yes, I did all of the research, read as much information as I could, and tried to get a firm understanding of what my son was experiencing. As it would turn out, all of that knowledge still doesn’t prepare you for the actuality of the situation.
I did what I do best, which was write about it because it allowed me to digest what was happening at the time. You could read about that here.
The truth is,
I’m no more equipped now than I was when I found out back then. Well, let me rephrase that, the journey has definitely gotten harder. When I read that as he got older and approached adolescence that tics would become more pervasive and new ones would manifest; I didn’t know how bad it could get.
Each and every day I wake up, my son could have a new tic. While tics can be physical movements, my son’s tend to be mostly verbal. We’ve experienced everything from whistling, raspberries, and all types of Grunts and moans.
They are definitely disruptive to say the least, but I think as a whole, our family has adapted to the shifts in his tics.
What I didn’t account for, was that he’d eventually become self aware, and begin to notice the difference between himself and others. There comes a time when your child’s innocence sheds and they have to come face-to-face with reality. It can be one of the most stressful and heartbreaking moments during parenthood.
My son not only has Tourette’s Syndrome, but it is coupled with ADHD and a mild touch of Asperger’s. This creates for many socially awkward encounters for my son whether he is in a school setting, congregation environment, or just an outing like running an errand.
He is aware of how people react to him; in the same breath, he can often times miss critical social queues in conversation that allow for him to determine whether or not to pursue conversation, not ask inappropriate questions, or provide an overabundance of information that no one asked for; namely regurgitating random scientific facts he retains.
This results in increased anxiety for him, which in turn triggers an increase of his tics and usually is compounded by an extreme sense of frustration for him which can create depressive episodes.
That’s a mouthful right?
Imagine the sheer isolation my son can often feel when he is misunderstood by people in authority like teachers, or other adult family members who don’t understand him, or even kids his age who think he’s just weird and want him to stop making noises so they chastise him.
All I want to do as his mother is shelter him, protect him, and make him feel good about himself. To know that there are moments when I am not able to accomplish that for him can be so disheartening and so discouraging and so depressive to me.
I think somewhere in the back of my head along this journey I secretly wished it would just disappear, and if I ignored it enough perhaps it would. But the truth is, this is probably the beginning of what is yet to come. I know that he does not have to be defined by these things, just as I am not defined by my mental health or any of the illnesses I may experience.
Sometimes I wonder if I will succeed in helping him find his voice and his place despite all of the things he’s going through. That is where the real battle lies for me.
I’m learning that as with everything else in life, this is something we are going to have to take one day at a time. That is how I keep my head on straight, my energy replenished, and my optimism intact.
I wish I had some clever anecdote to leave you with about what we are experiencing as a family dealing with this, but this time I do not have one.
And really… that’s OK.