Getting to know her

“I am autistic but that is not who I am. Take time to know me, before you judge me. I am cute, funny and like to have fun.”
~ Carly Fleischmann, age 14

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Over the holiday break, we watched a 20/20 segment that my father-in-law recorded about Carly Fleischmann, the nonverbal teen with autism who communicates through typing. I have always been fascinated and inspired by her story. Until the age of eleven, she seemed locked away in her own silent world and was considered severely impaired. But then she began typing, and as the words poured out, her family discovered a brilliant, expressive, feeling person they had never met. (Carly now has a blog and is writing a book.)

In an interview, Carly’s father said something that hit me like a ton of bricks. He said that when they realized all that was inside her, they were horrified that for most of her life they had spoken in front of her as if she didn’t exist.

When you live with someone who does not seem to understand your words and does not initiate interactions or voluntarily speak, it’s easy to forget that they’re… there.

But Rhema is always there. We try to be aware of where she is and what she is doing at all times. We talk about her in her presence – with teachers, therapists and friends. We talk around her – in the car, in public, at home – constant conversation is buzzing among the other members of the family. We talk over her (when she’s humming). We talk to her, but it’s a one-sided conversation and often involves directions to do or not do something.

So it is. My girl is with us, but not.

We make efforts to draw her in, but we get used to her occupying the periphery. And she seems quite content there.

A week ago we were loading the van with last-minute items for our drive home from Michigan, and something in Rhema’s ever-present sing-songy tune caught my ear.

It sounded like:

“Ud-byyeee!  Ud-byyeee! Ud-byyeee!”

She was walking around the house, not looking at anyone or anything in particular, singing her song.

I looked at my mother-in-law,

“She’s saying good-bye, isn’t she?”

She nodded, “Yes, she is.”

I watched her as she roamed the house, and I marveled. She completely understood everything. No one had bothered to sit her down and explain that Christmas vacation was over and that we were leaving Grandma and Grandpa’s house. Although she seemed oblivious, I’m sure she noticed us packing suitcases. But even beyond that, I’m sure she heard us discussing our travel plans and she knew that we were leaving. And she was saying good-bye… in her own sweet perfect way.

So often we autism parents say, ‘I know he/she understands so much more than they are able to show us.’ When the proof of that statement is revealed I am sometimes – I mean, always – left in mouth-hanging-open awe.

She really is with us. Right here with us.

And then my heart wilted. How many times has she been telling us something through one of her “songs” and I totally missed it? How many times have we failed to hear her… when all the while she’s been hearing us?

R, thank you for being patient with us. Forgive us when we overlook you, disregard you, underestimate you, under-believe in you. You are so smart and thoughtful, and we are loving getting to know you. You have so much to share with us. We see you, baby girl. And we’re listening.

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13 thoughts on “Getting to know her

  1. Incredible. Thank you for this. My own daughter is very verbal, but responds slowly. I am guilty of assuming that she’s “tuning out” sometimes…

    Food for thought. Thanks again.

  2. Powerful stuff! I have been so guilty of this, and I hate that my son feels like he has lived under a microscope. One day I was talking to his teacher and he interrupted to say that we needed to be including him in the conversation.

    Now I often find myself telling the professionals to just ask him when they are trying to figure out why he does something and whether a particular intervention might work. He doesn’t always know, but often he has a lot of insight.

  3. Your writing has a power that I am always amazed by. You state things that are “a-ha” moments in your life and graciously move past guilt- honoring its presence- to the “next step”/ “next right thing to do”. I have always known you as an amazing woman. Your blog reinforces that to me with each read. I am glad you have found a new path to listening for Rhema’s hopes, wants or thoughts. I hope this path leads you to even more understanding and better communication with each other. HUGS

  4. Communication! Your Rhema is getting there!

    Stop hitting yourself over the head, Mama. It does you and your girl no good. Blessings to you all.

  5. “But Rhema is always there…”

    That paragraph describes so well how it is with Joy in our family.

    It is very hard to be otherwise, especially when it comes to talking directly to her and not getting a perceptible response.

    Talking around her is, I think, inevitable and not necessarily a bad thing. Life goes on, and at least she’s surrounded by it. What’s the alternative, silence?

    The “talking about,” on the other hand — that’s the bad-news one, as far as I’m concerned. And I do it *way* too often.

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