By Audrey Hines McGill
We walk into my two boys’ new school and check out their new classrooms. We meet their new teachers; I say hello, and then introduce the boys. I explain how we’ve recently moved cross country for my husband’s new job. But what I don’t tell these new teachers is that I’m secretly hoping for a new start, a reprieve from judging eyes and ignorant staring that made up much of my previous interactions with teachers and other parents at my children’s prior school. I wish my boys have more play dates and birthday party invitations. I dream of neighborhood friends and for my children to feel like they belong.
At this very moment, I also secretly hope my children’s telltale eye rolling tics don’t happen as we make our introductions. Just for a little while, I hope for a break from the explanations and the reciting of diagnoses. For just a few minutes, I want my children to safely blend into the sea of students soon about to enter the classroom.
Since it is the dreaded beginning of the school year, it is time to inform yet countless more people of both of my children’s special circumstances. It is time to discuss 504 plans, IEPs, and special accommodations for their needs in the classroom. They have Tourette syndrome I will say. But how do I describe how Tourette syndrome affects them daily, while trying to sound as nonchalant as possible? I can tell them my standard, “It’s no big deal. You probably won’t even notice the tics” intended to alleviate some of their fears as well as my own.
I can say they have verbal tics, otherwise known as a constant stream of strange noises, snorts, and grunting.
I can say their eyes roll around making it difficult to read or keep their place. I can say that my youngest son, only 7, struggles with Copralalia, which is the unwanted urge to say socially inappropriate words and phrases.
But I cannot say that my 7-year-old is so tormented by his Coprolalia that despite my constant reassuring and comforting, he is convinced he is a bad person.
I cannot say that on my darkest days, I am angry at the world, angry at God, and angry at the genetics that my children could not escape.
I cannot say that I constantly become overwhelmed with the inner struggle of wanting to hide my children and keep them safe from the world’s glare or let them go and trust that they will be okay as they set off bravely on their own.
What I cannot say is that I am terrified that suddenly one day the tics will overtake my children’s ability to find happiness and joy in their life.
What I am not allowed to say is that sometimes my children’s tics annoy me, but I am asking that as their teachers, to please disregard the noises and movements in the classroom.
What I really cannot say is that I am tired of the explanations, the quizzical looks, and even the rude stares my children receive as we try and assimilate into any social gathering.
What I know I cannot say is that sometimes I feel extremely selfish and wish that this burden wasn’t mine and my children’s to bear. I wish for a reality much different than the reality we’ve been handed.
What I most certainly cannot say is the heartache of having children who by the very definition of Tourette syndrome, are considered Neurologically Impaired, sometimes makes me resentful. And now I am yearning for those carefree days before the words Tourette syndrome became a part of our lives and my daily fear for their future threatens to overtake my joy of living in the moment.
And so I reassure myself with maybes. Maybe everything will be different here. Maybe my children will find a place where they feel like they belong. Maybe I will. Maybe there will be a permanent vacation from the pity filled eyes. Maybe so many friendships will be made we will have to pick and choose playdates. Maybe my boys will be regarded for their beautiful big blue eyes and their senses of humor. Maybe their only noticeable characteristics will be their kindness toward others and their generous personalities. Maybe here they can just be little boys. Maybe here they can be recognized for more than their affliction’s definition. Maybe they can just love being 9 and 7. Maybe here their stream of internal torment can absorb me instead.
So I smile big and brave and kiss them each goodbye as I tell them that I love them and that they will have a great day. I watch as they walk through their new classroom doors as the promise of maybes swells so big inside of my heart that I can barely breathe.
Audrey Hines McGill is a contributing writer and Northwest native living in Seattle, Washington. She is writing her way through life one paragraph and one cup of coffee at a time.