just like me

The questions took me back to that feeling, that desperate, lonely, feeling of being a broken version of everyone else around me. I remember how it felt to never have a character in a book, movie, t.v. show, or a song on the radio reflect who I was. I remember the feeling of looking around and simply never ever seeing myself.

Community Means A Lot Of Things , Outrunning the Storm

It is Superbowl Sunday, but Brooke and I are on a mission that has as much to do with football as, well, something that has nothing to do with football. Her Princess Ice Cream Party is in three hours, and we’re off to the market for the ice cream. But first, we’ve stopped for breakfast.

“Who else had an EEG?” she asks, as we cross the parking lot toward the bagel shop. She still pronounces it as a word – Eeeeeeg. I don’t bother to correct her.

“Well, Rhema gets EEGs,” I tell her.

“Who else?”

“Hmm,” I say, “I think Jay might have had one recently.”

“[Our friend’s] son?” she asks.

“Yup,” I answer.

“He’s autistic,” she says.

“He is,” I say. “That’s right.”

“Only autistic people get EEGs,” she says.

“Well,” I say, “lots of autistic people do get EEGs, but nautistic people do too.”

“Did Hope have one?” she asks.

“No,” I say, “I don’t think she has.”

“She’s not autistic,” she says.

We order our bagels and sit to wait for them to be ready.

“Rhema doesn’t talk,” she says.

“That’s right, baby,” I say. “She says things in other ways. Like using her iPad to tell Miss Jeniel what she wants to eat. Remember when she kept asking for more peaches because she loves them so much?”

“Who else doesn’t talk?” she asks.

This is well-worn terrain

“We know lots of people who don’t say words from their mouths,” I say.

There’s comfort in the familiarity of repeated dialogue. This is what we do. 

“Your friend, Barb doesn’t talk,” she says.

“That’s right,” I say. “She types words. My friend, Amy types words too.”

“Are they autistic?” she asks.

When we ask questions to which we already know the answers, there are no surprises. This is how we process. This is how we learn. 

“They are,” I say.”And you know what?” I ask, deciding to add on to the script. “They are also both advocates. Do you know what that word means?”

“What?” she asks.

“Well,” I say, “it means that they do a lot of work to make things better for other autistic people. Like who?”

“Me!” she says, beaming.

“What does Amy look like?” she asks.

I take my phone out of my jacket pocket. “Want to see a picture of her?”

She sits straight up, the anticipation palpable.

“Okay,” she says.

I search for a photo of Amy. I turn the phone to her.

IMG_5135

{image is a photo of Amy sitting next to a computer screen displaying ASAN’s support page. She is smiling.}

She looks at Amy’s picture for a moment and says, “She’s autistic. Like me.”

I smile. “Yup,” I say. “She’s beautiful, isn’t she?”

She doesn’t say anything, but puts a finger on the phone, tracing one side of Amy’s face.

I’ll take that as a yes.

“I’m not alone” doesn’t have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn’t alone, that there’s a whole community that will embrace him because he’s one of ours.

– You, Yes, You, Need Autistic Friends, Neurodivergent K 

“Want to see Barb too?” I ask.

She says that she does.

I search for her Facebook profile and pull up a photo.

IMG_5138

{image is a photo of Barb on the set of Loud Mute Radio. She is smiling up at the camera.}

Later, I would talk with my friend Jess from Diary of a Mom, about my meeting with Ibby, trying in rapid fire succession to remember, process, and spit out every bit of new insight I had gained. I would mention that Charlie had not exactly enthusiastically participated in the process and that I worried I was fooling myself that he was ready for this.

She asked me to step back and imagine for a minute what it would have felt like for me, as a kid, if my parents had brought a lesbian couple into our home. If they had casually introduced me to Sue and her partner Jane. She asked me to think about what that would have felt like for me? How that would have changed things for me? Even if I never approached those women with all the questions burning inside me. What would it have been like to just know they existed and to see them as a normal part of our world?

– Community Means A Lot Of Things, Outrunning the Storm

I show Brooke the picture of Barb. I can’t help but smile back at her grinning face on the screen.

“Barb’s beautiful too,” I say, “isn’t she? She’s one of Mama’s favorite people in the whole world.”

“And she’s autistic,” Brooke says.

“Just like me.”

“That’s right, kiddo,” I say. “Just like you.”

IMG_5067

{image is a photo of Brooke, dressed as a princess, looking at her reflection in the mirror before her guests arrive. When I ask her what she sees, she says, “Beautiful.”}

Photos used with permission. Thank you, ladies. For a whole lot more than the pictures. 

10 thoughts on “just like me

  1. “When we ask questions to which we already know the answers, there are no surprises. This is how we process. This is how we learn. ”
    A text exchange between me and my gorgeous 10 year old PDD-NOS boy…
    Me: Andrew
    Him: Yes?
    Me: Who loves you?
    Him: You do.
    Me: How much?
    Him: Bigger than the world.
    Me: What can you be?
    Him: Anything.
    Me: Bien. ❤️
    He’s finding his community and he’s learning he has a place in this world through our scripts. His pragmatic language emerged the same way; scripts that were tweaked over time to fit the situation as new language was acquired. Mad libs of a sort.
    Thank you for all you do and all the sharing. You help me be the mother he needs. You helped me find him people instead of hiding in a corner.

  2. My son has cerebral palsy. One of the most exciting things he has done is connect with other people who have cp. He told me it’s nice knowing he isn’t the only one.

  3. this type of connection is why i get up in the am, ok my beloved cheerios help too. Princess Brooke, I’m sending you a picture on Facebook of an EEG and me. the more interesting part is that picture is right now dangling in front of me tied to a helium balloon with a handwritten message on back “Barb with the patience of Job suffers you better than any of us”. the connection to your beautiful piece, “just like me” and the comments above does not end there. you see i am typing this in a friends home while i work on my radio show script. my pal, ss, turned 48 today so her son and wife filled the room where i work with 48 balloons each floating a picture memory and love note. i am well represented in the floaters. i tell you this not from words from my mouth but from my heart. people like you, amy, andrew, dani and me are not broken versions. we matter to people – a lot! being surrounded by love and helium makes doing a lot of work to make things better down right fun. Eeeeeeging you on b

  4. I am autistic and I run a social group for other autistic people. I also occasionally have the opportunity to make speeches at autism events. One time I gave a speech at an event for world autism awareness day, and afterwards a Mom asked if I would speak to her daughter. I said yes, and the Mom brought her daughter to meet me. This lovely young woman said to me, “My name’s D, and I’m autistic — like you!” She was just so happy to meet another autistic girl like herself, and it reminded me how happy I felt when I was able to first meet other people like myself.

    Some people tell me that I am somehow encouraging segregation by having a group for autistic people. They don’t understand what it’s like to have this kind of community and how much I enjoy being around other autistic people like myself.

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