In Their Own Words – It’s For Me
This ‘In Their Own Words’ author is Jess, who can be found at Diary of a Mom. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
It had been a long, full, long day. Yeah, I know I said long twice.
We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.
We – or the bigger of us at least - were ready for sleep.
We were lying on Brooke’s bed, snuggling together in the dark.
After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day – I wondered what she’d taken in.
Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.
Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?
Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?
Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?
Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.
Did the word sink in?
Did she connect it to herself? To us? To our family? To who we are?
Does it have any meaning for her at all?
Did she notice it that day? Over and over and over again?
“Hey, Brooke,” I asked into the darkness, trying to sound casual.
“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.
“Do you know that we go to the Autism Walk because you have autism?”
I was trying hard to sound cheerful – to keep the words light.
It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.
She didn’t answer. She was too busy fiddling with my hair.
I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.
“Baby, do you know that you have autism?”
I’ve asked this question before. I’ll ask it again.
It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.
Add that internal monologue to the list of my greatest fears.
“Do you know what that means, Brooke – when Mama says that you have autism?”
She answered. On some level, I was getting through.
I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.
“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”
“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”
She has the right to a community. If I can help it, my girl will know she is not alone.
“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”
I smiled at her, though she couldn’t see me.
“Right baby girl, I’m sure she will.”
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.
I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.
We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.
And wouldn’t you know it? In the morning, under her pillow, there was Blue.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.