My mom made me mad again last night. When she’s not in the right state of mind, all these awful things come out of her mouth. Is it that when she is disinhibited her real feelings and thoughts come out, or is it that when she is disinhibited the pressures of the society she lives in that cares so much about “status” and the “norm” cannot be overcome in her mind?
I really don’t know. Just when I think I have actually made an impact on her and I have actually changed the way she thinks about Tourette’s and differences in general, she says something like this…
Last night she said to me in front of two of her good friends “these people with Tourette’s need to get their tics under control because they are not socially acceptable.” That makes me absolutely furious!
Beyond disappointed and ashamed that my own mother would say something so uneducated and ignorant! Beyond disappointed that the kind of person she is being right now is the reason my wonderful girls at camp that I feel so protective of have to work to overcome the feeling like they are “less,” “different” or that it’s not okay to be themselves.
I LOVED ALL OF THEM FOR EXACTLY WHO THEY ARE! I loved all of them because they are special and wonderful young ladies who are going to change lives and make so many people care about them just by being exactly who they are. They have already changed my life, that’s for sure. Their tics make no difference!
They are who they are and I NEVER want them to be ashamed of that and I NEVER want them to be ashamed of their tics or their OCD or their anxiety. I NEVER want anyone to ever tell them the kinds of things my mom tells me. I NEVER want them to hear those words because they are NOT TRUE and simply come from ignorance.
I don’t want them to have to deal with unkind and untrue words, I don’t want them to deal with the ignorance some people in our society still hold, and I just don’t want them to have to deal with the part of society that still thinks you have to be “perfect” and “normal” to make a difference in this world and in people’s lives and to have so many people who you love and who love you back.
I want every person in the world to understand what it is really like to have Tourette’s. I want every person to understand what a person with Tourette’s goes though when their brain is telling their body with so much power and might to do things that they really don’t want to do.
These things that are brain forces us to do can be physically painful, can be embarrassing, can be the exact opposite of what we want to do in a given situation and it doesn’t matter, our brain is going to keep telling us to do it until there is no resisting any more.
I want them to understand how hard it is to get to that point of acceptance of yourself and your tics and your differences and then to have someone you love push that down. Many people wish there was a cure for Tourette’s. I too wish for this. But sometimes even more, I wish for a cure for ignorance.
Any time someone types in all caps they really mean it, and I can sense you really mean it and are at the end of your tether with your mom. In your opinion, do you think a lot of parents whose kids have tourette act like this?