My youngest lives with Tourette's. She also lives with kids in her school who are both jealous and intolerant of her. There is a parent on our block who just thinks if we beat her she would get over it. Others think she is being spoiled because she is so bright. The teachers are wonderful, though taxed, and their kindness makes kids who are not as smart more jealous and more upset (though I obviously would prefer that they be kind to my daughter than not).
It helps that my daughter is kind. When others do not understand, she helps tutor them. If someone falls, she rushes to help them up. She shares what she has. She is extremely cheerful and very bright.
But she has the OCD, extreme ADD and is hyperkinetic as well as the rest of what Tourette's implies. She is lucky in that it appears that much of it will resolve with age, and for the rest, we keep trying different blends of medication and treatment. Unfortunately, what helps with one problem makes the rest worse. Somethings just make everything worse. Every time she ages a little, the blend that works right for her changes.
I talk with parents whose children have had multiple in-patient stays. I know my situation is not as demanding, heartbreaking or painful as theirs. But, it is my situation, and more, it is my dear daughter's life.
And to find out last week that it was replicating stories I hear in church, and from the harsh end of the story, that was difficult, even more so when someone told the story again this Sunday in a talk. A very good talk, mind you, but still, it made me think of my daughter.
It is hard to tell if I'm happier that the box was empty or not. I just feel so helpless. It would be easy to teach her to respond to every slight and hurtful encounter with "You are just stupid and jealous, get over it lamesauce." She could do that and it would insulate her some. They would not hate her any more than they do now.
But, it would change my kind, sweet daughter into someone else, someone who says those things. I don't want to lose her to that kind of person either. But to have her day after day, week after week, month after month beg for a place to hide from the other kids, always respond to questions about her day with pain as to any social interaction (though she is excited when she learns something new, she got far enough ahead on her own they talked with us about skipping her ahead another grade), I feel like I'm failing her.
I'm glad she was able to go to camp, and be in a place where no one stared, no one hated.
To quote from the essay at the second link (way down the page, that is why I'm quoting):
Good Evening. My name is Joshua Perez. I am 12 years old from San Antonio. I am the face of Tourette's. I was diagnosed 3 years ago. Having Tourette's is very difficult every minute of the day. People don't understand, they stare and make nasty comments. Tourette Camp is very important to me. I can tic and no one stares. I have friends from the support group that go to camp with me. I make friends while I am there. 58 more days until camp. Thank you very much for coming tonight and helping Tourette of Texas. I am Joshua Perez, the face of Tourette's.
Those moments come so seldomly. Much too seldom.