further reading

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Yesterday, since I’d taken the day off of work to host an Aide Appreciation Luncheon, we had the rare privilege of having breakfast together as a family. The conversation went something like this …

~

Me to Luau: I really hope that Ms Bazelon responds to my post.

Katie, with a mouthful of cereal: Who are you talking about, Mama?

Me: Hmm? Oh, a lady that gave a speech about autism that I found kinda troublesome.

Katie: Oh. Does she have autism?

Me: No, sweetheart.

Katie: Hmm. Does she have a kid with autism?

Me: Nope.

Katie: Does she know autistic people?

Me: Not really.

Katie: Does she work with them? Is she a teacher or an aide or something?

Me: No, honey. She’s a journalist.

Katie: I’m confused, Mama. Why is she giving a speech about autism then?

Me: Excellent question, babe. Excellent question.

~

My girl gets it.

She gets that the first people from whom we should be taking our cues about autism are autistic people. Next, perhaps, their parents. Then, maybe, those who spend a lot of time working with them – teachers, paras, the ones who dedicate their careers to opening up the world to our kids. But people on the outside looking in? Not so much.

I had planned a silly little post this morning. It was a funny story about Brooke from last night at the Christmas carnival. Good stuff, really. About how, just after Santa had moved on to another train car on the Polar Express, the singing chef had asked if we’d like to sing some Christmas carols on the way home from the North Pole. How the kids got to choose what we’d sing and how one little kid had us all sing a rousing (and disastrously off-key) version of Jingle Bells and how then Brooke stuck a finger in the air and shouted, “I have an idea!” and how the entire train car waited with bated breath to hear what we’d be singing next and how she shouted, “We can sing Dreidel, Dreidel, Dreidel!” and we all cracked up and she basked in the glow of the laughter and it was just all kinds of awesome.

But then I got a note from my friend, Kate directing me to her post today.

And it left me in tears. And without words. Which is ironic, given its content.

But mostly, it made me think.

And, it made me realize, that my God, it’s a message that we all need to hear.

It’s so easy to build up a child.

It’s not so easy to break down thirty years of destructive messages.

In Person First I wrote the following.

“My girl will undoubtedly face ignorance as she steps further into the world. When she does, I want her armed with an impenetrable wall of self-esteem. Of belief that just as there are serious challenges in her autism, there are also gifts – her incredible memory, her uncanny ability to repeat what she’s heard or read, her pitch-perfect imitation of accents – and so much more we will have the joy of watching emerge as she grows.”

I want her armed with an impenetrable wall of self-esteem. 

Those were the words that came back to me after reading Kate’s post. That’s what she deserved as a child. And is working so hard to create now.

It’s so easy to build up a child.

It’s not so easy to break down thirty years of destructive messages.

Messages that to my girl will contain phrases like “empathy deficit” and “blocked empathy sensors”. Messages that will come wrapped in words like “Burden” and “Tragedy,” “Broken” and “Cure.” Messages that will come through loud and clear when she’s the only one not invited to the birthday party.

I may not be able to protect her from all of it, but I can give her every tool I’ve got to protect herself. I can tell her every day that she matters. That she’s the most perfect creature on God’s green earth. That she’s funny and generous and empathetic and that I love the way that she sees the world. I can tell her that her desire to make other people laugh is a gift to us all. That her jokes are hilarious.That her spirit renews mine every day. That she’s tenacious and brilliant – God, that she’s brilliant. That she glows from the inside out. That she changes people. That she’s changed me.

Kate reminded me that I can write all that as much as I want here, but the part that matters is telling Brooke.

And showing her.

I can show her that autistic voices like hers matter. That she — and they — are the ones from whom I will always take my cues. That it is her — and their — words which matter most.

Thank you, Kate. And to all of the incredible autistic women who continue to raise their voices and shout into the wind. You are heard. Thank you.

*

Kate’s post

My friend Chloe, in her own words

A post by another mom that moved me to tears yesterday

Kate Parker’s senior presentation

Rachel Cohen-Rottenberg

Amy Sequenzia

Carly

Stimey

Julia Bascom

Autism Women’s Network

Ed note: I’m having a lot of trouble with the links this morning. Hoping they’re working! Even if you don’t see the above names in blue, please click on it them jump to their words. Thanks!

4 thoughts on “further reading

  1. I can show her that autistic voices like hers matter. That she — and they — are the ones from whom I will always take my cues. That it is her — and their — words which matter most.

    Amen to that!

    Love you,
    Mom

  2. As I have spent this week fighting for services for my girl, being forced to painstakingly eek out every.single.one. of her struggles in order to give her the support she deserves, this is what I keep coming back to. I want these to be the words she hears. I want to shout it loudly for all to hear.

    “That her spirit renews mine every day. That she’s tenacious and brilliant – God, that she’s brilliant. That she glows from the inside out. That she changes people. That she’s changed me.”

    Thank you Jess, and thank you Kate, for reminding me which voices matter most.

  3. As I have said several times in the past,”I wouldn’t ever want to be on the wrong side of your pen.”
    Your point is well taken ,but pointed is the operative word….
    I would suggest you help her (the reporter) to understand and perhaps change her thinking…
    Sugar is always easier….
    Love,
    Dad

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