“Brooke, honey,” I asked, “Do you remember how we talked about autism?”
“Yeah,” she said to her chair.
I knew her heart wasn’t in it, but at least she answered without prompting. That’s something.
“Do you remember that Mama said that you have autism?”
Clearly I’d have to proceed without a lot of encouragement.
“Well, baby, April – that’s the month that comes after March, right?”
I paused to make sure she was still with me.
“Well, April is Autism Awareness Month.”
“It comes after March,” she volunteered.
“That’s right. And April is a time when people learn about autism.”
I thought about asking another question to keep her engaged, but the constant third degree gets exhausting.
“So, Brooke, Katie is going to make a really big painting for Autism Awareness Month and hang it up at the Mayor’s office. Isn’t that cool?” (Ed note: please click –> here <– to read about Katie’s mural!)
“Do you think you’d like to help her with the painting?”
“That would be great, honey, I ..”
I didn’t have a chance to finish. She had something pressing to ask.
“Who says, “You tell ‘em buddy boy” to Elmo?”
“The pillow does, baby,” I said with a tired smile. This is what we do. Elmo’s world is the flavor of the month. The scripts are on loop.
“That’s right,” she said, repeating her pitch-perfect imitation of the pillow on Elmo’s World. “You tell ‘em, buddy boy!”
She had cracked herself up. She was now laughing uncontrollably. Our conversation was over.
I will keep trying. I will keep trying because I cannot in good conscience have this conversation about her without making an attempt to have it with her.
She has a right to know that there is a community out there for her. That there are children who will grow to adulthood by her side who have had a similar life experience. Who get it. Who know what it’s like to see the world differently from everyone else they know.
She has a right to own the words. To make them her own. To use them in a way that she finds appropriate. To tell me how to use them.
She has a right to know that there are tools that can help mitigate her challenges. She deserves to know that she has gifts. Beautiful, wondrous gifts. That for her, autism is not a disease that needs to be eradicated. Because until we can give her the option, I will not let her grow up feeling like she should hate such a large part of who she is. She deserves to know that SHE is not something in need of fundamental alteration. But so too, she should know that there are others out there who are crippling disabled by their autism. She should know that if she can find her own voice someday, she will have a responsibility to fight for them too.
She has a right to know how many of us are fighting for her.
I will keep trying.
Ed note: Three days left until the eve of World Autism Awareness Day. We’re not giving up on a Blue White House. One blue light, Mr President. Just one. It would mean the world to those of us for whom autism IS the world. Click -–> here <— to read and share my letter to the President. Thank you.