One of the things that truly makes my heart sing is when I realize that LuLu realizes that someone truly “gets it” what it’s like to be her. Being LuLu’s mom is HARD! But being LuLu herself is so much HARDER! It irritates me when people who interact with LuLu tell me how hard they are trying and how difficult SHE is. Being around LuLu is difficult, but SHE is not difficult. Why do I say this? Because I know she’s not trying to be difficult…she’s trying to deal with the difficulties in her way. That is, by definition, what disabilities are, right?

Every once in a while someone “gets it” and teaches me something that enables me to “get it” even more. Recently we’ve been checking out more information about Tourettes and I’ve been learning. So as I tucked her in bed the other night, she said something inappropriate about one of my body parts. Just blurted it out.

“Why did you say that?” I asked. (in a totally matter-of-fact tone)
“I don’t know,” she responded.
“Were you thinking that inside your head?”
“It’s a loud thought in there, Mom, and it has to come out.”

Hmmm…very telling, so I explored.

“What do you mean it’s a loud thought?”
“I just keep thinking it until I say it and then it goes away.”

Hmmm…sounds like a tic to me.

“Can you stop it?”
“It’s very hard, Mom.”
“Can you say it silently?”

We tried a few rounds of saying some of her repetitive very inappropriate things silently but very animated. She was amused, but wasn’t convinced it would actually work.

The next day she tried the silent animated tics a couple of times and they worked. But that method didn’t work all the time. However, she was relieved that I “got it” about the tics.

“How did you know about the tics, Mom?”
“The doctor who evaluated you told me.”
“He’s a pretty smart guy,” she sighed with relief.

I was reading the Tourettes Syndrome Association website the other day. They produced with HBO an Emmy-winning documentary entitled “I have Tourettes but Tourettes Doesn’t have Me.” There’s a brief clip of the show on their site. LuLu and I viewed it together.

I was awed that while she watched these children be interviewed and start to tic (because being interviewed on camera did produce anxiety), she ticked too. Hmmm…I wonder why? I don’t know the answer, but what I do know is that in that brief clip, LuLu got the message…she wasn’t alone and other folks “get it” about the tics.

Since then, she’s worked even harder to verbalize when she doesn’t mean what she says. She now says stuff like, “I didn’t really mean that,” and “Oops, that’s not what was supposed to come out.” It’s definitely a step in the right direction.

So together, LuLu and I continue to “get it” and are grateful for all the other folks who “get it” too.