Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, November 14, 2008

How Did I Miss the Signs?

Oh man, I came home from play rehearsal tonight feeling like a HEEL!!! (for more about the play, see the next post.)

During the closing scene, there is freeze scene. That means the entire cast is frozen so the audience eyes will move to the very last event....and then the lights go down.

During the freeze scene, I'm in a group with one other woman and 5 or 6 kids. We're kind of huddled in a group talking, then the music change is our cue to freeze. There is one young man...I think he's about 10 or so...who just cannot do it. I'll call him Jack. Jack can't freeze. Jack can't stop wiggling. I talked to him a couple times about what "freeze" means, and that no matter what, he's not supposed to look at what's happening on the other part of the stage. The kid is 10, he should be able to do this. Instead it's like he can't NOT look.

How stupid I am.

Tonight at rehearsal I was sitting backstage with Roman (one of my dogs who was also in the play), sitting in the silence that is the world of "backstage", when I heard this high-pitched squeaking noise. Just one sqeak. Quick. Quiet. Stifled sounding. I doubt anyone else would have heard it, but I recognized it for what it was instantly.

 I wasn't sure where the squeak came from. There was one adult cast member sitting near me, and in the corner about 10 ft away sat Jack. The second I saw Jack, I knew I was right, but I watched him a minute to be sure. As he sat in the semi-darkness with his eyes focused on something in his hand, it was clear as a bell. The eyebrows moving, the grimace, his leg jerking just slightly, him clenching his lips together. It was all very subtle, so much so that nobody else would have seen it, bit it was oh-so-familiar to me.

Within 10 seconds of watching I was 100% sure of what I saw. I knew it without a doubt, and instantly I felt horrible. Not because I knew, but because I was so wrong on stage! And, I knew that since it was so apparent, Jack would know exactly what I was talking about.

I crossed the room and sat in the chair next to him. "Do you mind if I ask you a question?"
"Sure" he said.

"Have you ever heard of something called Tourette Syndrome?"

His eyes got very big, and he looked at me and said, "I HAVE Tourettes!"

"Yes, I know. I could tell. But don't worry...other people wouldn't be able to tell. I can tell because my son has Tourette Syndrome, and...if you watch my face really close, you might see some of my tics as well. I don't have Tourettes, but I have a tic disorder that's very similar to it."

Jack was very quiet. I could tell he wasn't sure if I was for real or not. I asked him, "What's the one tic that bugs you the most?"

"I have this high pitched squeak. I can't hide it, and it comes out whenever it's really quiet."

Poor kid. Backstage has got to be hell for him. But man, I give him credit! He's taken what could be the most difficult situation in the world for a person with TS, and embraced it. "My son had a squeal, only his was REALLY loud, and the more excited he got, the more he did it."

An hour passed. Time for the closing scene. I kept my eye on Jack, not because I wanted to make him stand still, but because I wanted to watch him through new eyes. Finally I saw what he did to cope. There is one boy who ALWAYS stands right next to Jack on stage. They must be very good friends, and he must know about Jack. During the freeze scene, Jack had his hand on the other boy's elbow, and was rhythmically squeezing it in a way nobody else could see. The other boy gave no reaction. This squeezing is a way for Jack to release the tic that's trying to escape from him in a way that is less visible. He still had trouble standing still, but knowing what I know now, I'm so incredibly impressed. He did an AMAZING job!!! After the scene the other adult we stand with started to say something to him. I caught her eye, and gave her a look that said, "don't...not now..." Later backstage I told her, "Don't worry. He's NOT able to stand still...he's as still as he can be. He's doing GREAT!" I didn't want to tell her about Jack, because it's really not my place to do so if it's something he's keeping a secret.

For all the Jack's out there, who might be reading. If ever someone gives you a hard time because you're ticking, but they don't know that, try your hardest to not be afraid to tell them. Remember, with knowledge comes compassion and understanding.

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