She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.
~ It’s For Me, Sept, 2010
Last night ..
We’re sitting at the kitchen table eating dinner.
“Katie,” Luau says, “do you remember that I’ll be at your school tomorrow?”
Of course not. She doesn’t remember what you told her thirty seconds ago. It’s the first tenet of tweendom – Thou shalt not retain anything a parent tells you. She looks at him like he has three heads.
“I’m presenting to the fifth graders as part of the inclusion initiative,” he says. “And I’m going to be talking about Autism Spectrum Disorder. So I wanted to ask you – would you be comfortable if I mentioned that Brooke has autism when I talk to the fifth graders?”
I try to get his attention without making a fuss.
I want to make this stop.
Not because it isn’t a perfectly valid question. It is. And I understand why he’s asking it of Katie – he’s presenting to her and her classmates. But the question needs to be Brooke’s first. And then it can be Katie’s.
This is out of order.
Katie answers. “Yeah, of course. That’s fine.”
Luau finally looks at me, sees the urgency in my face. I motion toward Brooke.
“I was going to ask you if …” he says to me.
“Ask BROOKE,” I say.
I don’t realize that I’ve been holding my breath.
“Brooke, honey,” he says, “You know how we’ve talked about autism before?”
“What’s ott-izum?” she asks.
She’s never said the word before.
It sounds so strange on her lips.
In her voice.
I can’t process it in real time.
I stow it away – tuck it safely in a spot where I can break it down later. I’ve got to stay present.
Luau looks at me. I look at him. There’s an excruciatingly awkward twenty seconds in which neither of us is ready to speak.
But Katie is.
“May I say, please? I can tell her.”
Luau looks reticent. He starts to say something. I stop him.
“I trust her,” I say. “Go ahead, Katie.”
Katie looks at her sister. Her face is soft and gentle.
“Brooke, autism is what makes your mind special.”
“It is?” Brooke asks.
“Yep, it can be what makes some things hard for you sometimes, but mostly it’s part of what makes you really cool.”
I wink at Katie. Job well done, kiddo. Then I turn to Brooke. “Honey,” I begin, “do you remember when we went to the Autism Walk?”
Her face lights up with recognition.
“Yeah, and we won!”
I laugh. “Yes, and we won. But do you remember how we talked about how a whole bunch of kids there had autism just like you?”
“Well, like Katie said, autism is something that makes your brain a little different. It’s part of what helps you remember all those lines from movies and books. And that’s pretty neat, isn’t it?”
“And sometimes it’s also what makes some things kinda tough. Like when you get overwhelmed in places that are too loud – like when we go the mall and there are babies there. But more than anything, it’s just part of what makes you you. Kinda cool, huh?”
Luau watches her intently.
“So Brooke,” he says. “is it ok with you if I tell the fifth graders that you have autism?”
There’s so much more to say.
More than we will be able to say in a lifetime of words.
For now, we ride the surface.
Later we will dive in – deeper and deeper as she’s ready.
The conversation may not be how I envisioned it, but what ever is?
I may not have said everything I wanted to say, but who ever does?
There is so much more to say.
There will always be more to say.
But it’s a start.
Ed note: To read more about why I think that disclosure is so important, but please click HERE and on the links above (in blue.)
Ed other note: I am honored to be guest posting today at The Oxygen Mask Project talking about accepting help. So if you’re up for a double-header of Diary, please click on over! I’d love to see you there.