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    Posted July 8, 2014 by
    ATLdotmom
    Location
    Atlanta, Georgia
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Why a Life Touched by Tourette Syndrome Is a Lot Like an Episode of The Walking Dead

     

    We got drawn in to the Walking Dead phenomenon late...my husband and I. We are not huge TV watchers, so it took us a year or so of hearing various co-workers and friends expound on how great the show was for us to finally buy the DVD and fall prey (pun intended) to the highly addictive show.
    There are times watching The Walking Dead that I try to imagine what I would do if that were actually happening to me...if I were trapped in a nightmare that I could never wake from and that seemingly may never end. Why even go on, I think, there is no hope that it is ever going to change. These people are never going to get a break, they are never going to have a moment's rest when they are not plagued by these walkers, either physically, being attacked on a daily basis, or mentally, planning for the next attack. They wake each morning to the reality that they are facing yet another day of hardship, another day with no relief in sight. And all their struggles, all their spears and knives through all the zombie heads, all the effort they put into just living each day, may be for naught, because it may never get better. And that awareness must be in the back of their minds all the time.

    And in thinking on this, I realized that although I am not faced with fleshy, rotting dead people trying to eat my intestines, I often feel the way I would imagine Rick and Maggie and Michone feel each day. I wake up and before my feet touch the floor, I hear a loud tic from my son upstairs and a rush of despair fills me. My son, who is thirteen, has severe Tourette Syndrome. Tourette Syndrome or TS is a neurological disorder that is characterized by involuntary tics, motor and vocal. Many people have tics, but to be characterized as Tourette Syndrome, there must be both motor and vocal and they must have been present for more than a year. My son's started at age 6, and while they have waxed and waned over the years as is characteristic of the disorder, if they are not completely in your face, they are lurking in the background threatening to burst into the open at any moment. It is estimated by the CDC that 1 in approximately 360 children ages 6 through 17 have some form of TS. A very small portion of those children, around 10%, exhibit coprolalia, the most publicized type of tics of Tourette Syndrome. Coprolalia is the utterance of socially objectionable or taboo words or as it is commonly called, the "cursing tic." My son is one of the 1 in 360 and one of the 10%.
    Much like the living in the Walking Dead, our lives are lived in limited spaces. My son goes to school, the doctor, the dentist and home. That's it. We can't take him out to eat or to the movies; can't go to the aquarium or the science museum; can't go to the pizza place down the street where all the neighbors go; can't go to the mall or the swimming pool that we pay dues to each year in the vain hope that one day the tics will subside enough to slip in and swim without causing too much of a disturbance. He can't go to his sister's tap dance recital or watch her compete in her horseback riding show. Not many people come to play. Sure, we get to the places we need to...the grocery store, drug store, etc. but it is only after a well-executed strategic plan involving one person staying at home with him or leaving him in the car and rushing in and out of the store with the swiftness of Walking Dead survivors storming into an abandoned market to grab whatever food has not yet been taken. Then we are back at home, safely behind closed doors.

    And while it seems from the research out there that there is hope things will get better as he goes through adolescence, there is also a chance that it won't. That is will always be this way; that there will never be a day when we can relax, rest our legs and say to ourselves, "That was hard. But we made it through." And I think that is how it must be to be part of the living on Walking Dead. It's so very hard every day, and you just don't know if it will ever get better.

    But the characters keep on going. They keep fighting. They keep saving their people. They have become toughened and inured to some of the daily horror they have to face to the point that taking a few walkers out with a hatchet is about as troublesome as changing the toilet paper roll. They keep getting up every morning and they find a reason to smile and laugh and hope each day.

    And so do I, I guess. I keep going. Not only do I keep searching for the perfect medication/vitamin/therapy combo that will ease my son's tics, I do other things...things that the folks on Walking Dead might do that often strike me as pointless. I keep reminding him to wipe his face, put away his plate, write a thank you note, do his homework, say please and thank you, shake hands firmly and look people in the eye. I make sure he really understands why you carry the one when you multiply and what the difference in latitude and longitude is. I make orthodontist appointments because soon he will need braces. And I keep on operating like things are going to get better, even when I'm not sure they will.

    Which is why I guess Walking Dead connects with so many people, people who have never spent their days fighting for their survival. Because there are a lot of us caught in this walking dead state. Unlike the true zombies, our bodies may be intact, but our souls are wounded. But we keep on going, we keep hoping that one day the hard part will be over and we can come out the other end stronger and better for what we've been through and the time of fighting the demons that plague us will be a distant memory.

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