just you

Come closer, would you? I have something that I really want to talk to you about but I kinda need your full attention.

I know that some of you really don’t buy it when I say that we need not teach our children to hide their autism but instead teach the world to accept autistic people.

I know you say that the world isn’t ready for them in all their glory yet and so it’s better to protect them from its bigotry and cruelty than to send them off with the vulnerability of authenticity.

I know I sound like a feel-good meme generator when I say things like, “Encourage everyone around you to be exactly who they are.”

But lives are at stake. Literally.

Two years ago, I wrote the following:

The other day, a friend sent me a quote. “This made me think of Brooke,” she said.

To be nobody but
yourself in a world
which is doing its best day and night to make you like
everybody else means to fight the hardest battle
which any human being can fight and never stop fighting.

e.e. cummings

The words took my breath. I had nothing.

I tried to sit with them, but the sadness was too much, so I walked away; I left them alone. But they, as words so often do, refused to leave me alone in return. They knocked on my door and knocked yet again and yet again still, growing increasingly insistent. They would be heard.

So I read them again. And again. And ever so slowly, I found a resolve growing around the sadness. Around the immovable weight of knowing how hard it can be to be my girl in a confusing and often hostile world, my will to help her to create an impenetrable wall of self-esteem grew stronger still.

The world needs our children — ALL of them — to be exactly who they are. Not facsimiles of everyone else, not watered-down versions of themselves to be deemed tolerable to the masses. No, themselves. In all of their messy, beautiful glorious self-ness. If I successfully convey only one message to my daughters, let that be the one. Be wholly, completely, gloriously, divinely, truly who you are.

I went on to read more e.e. cummings. I found a treasure trove of beautifully wrapped wisdom.

“Love is the voice under all silences,” he said, “the hope which has no opposite in fear; the strength so strong mere force is feebleness: the truth more first than sun, more last than star…”

The hope which has no opposite in fear.

As I devoured the words, the heaviness I’d felt was enveloped in something .. well, hopeful. Something encouraging. Something that said, “It can be done.”

Two years later, I dedicate those words to a young woman in a hospital room on the other side of the world this morning. And for her, I add this …

e.e. cummings also said,”We do not believe in ourselves until someone reveals that deep inside us something is valuable, worth listening to, worthy of our trust, sacred to our touch. Once we believe in ourselves we can risk curiosity, wonder, spontaneous delight or any experience that reveals the human spirit.”

That something is inside of her, even if she can’t see it right now. It’s in everyone who reads this and all of our children and their children and their children’s children. It’s in each of us too – in every human being who walks this earth: that something valuable and important and worthy. That something unique and hard and messy and beautiful. That something that makes this world a better place simply because we show up in it and shine our light.

I know that sometimes it doesn’t feel that way. I know that we hear parents and teachers and therapists say things that belie it. “He’s come so far!” we hear (and say). “You’d hardly know she has autism now – what amazing progress!”

But just what kind of amazing is it?

What is it doing to the kid who has come so far in learning to disguise who he is – to hide in plain sight, to stuff and squelch and refrain and restrain and be enough like ‘us’ to no longer feel worthy of a life lived as herself?

For the girl in the hospital on the other side of the world.

You are beautiful. You are gloriously messy and complicated and perfectly, wonderfully you. You are infinitely, powerfully loved and worthy of that love.

The world needs you in it, sweet girl.

Just you.

6 thoughts on “just you

  1. “I know that sometimes it doesn’t feel that way. I know that we hear parents and teachers and therapists say things that belie it. “He’s come so far!” we hear (and say). “You’d hardly know she has autism now – what amazing progress!”

    But just what kind of amazing is it?

    What is it doing to the kid who has come so far in learning to disguise who he is – to hide in plain sight, to stuff and squelch and refrain and restrain and be enough like ‘us’ to no longer feel worthy of a life lived as herself?”

    Yes. This. It’s taken me a long time to reject the “look how well he’s doing” approach to gauging supports and instead look at it as “how can we teach him to love himself and teach others around him to do the same.

    I don’t know this beautiful lady across the globe, but I hope she knows she’s in our hearts and is part of a community that loves her for who she is.

  2. sorry to need it spelled out, but what do you think of social skills training then, like social thinking? Or integrated playgroup therapy? I was on the verge of signing my child up for the summer and then said f&$k it, I want a pleasant summer and he’s going to be so tired being forced to play with other kids.

    • Hannah – check out facebook and Karla’s ASD page. She’s an autistic parent of autistic children, and she has info in her Albums file that will support your gut feeling of f&$k it 😉 Also, Sara Sanders Gardner on facebook (autistic mom of autistic kid/mom was diagnosed after kid was) – just posted about this very thing.

  3. “What is it doing to the kid who has come so far in learning to disguise who he is – to hide in plain sight, to stuff and squelch and refrain and restrain and be enough like ‘us’ to no longer feel worthy of a life lived as herself?

    For the girl in the hospital on the other side of the world.

    You are beautiful. You are gloriously messy and complicated and perfectly, wonderfully you. You are infinitely, powerfully loved and worthy of that love.

    The world needs you in it, sweet girl.

    Just you.”

    You nailed it once again!

    Love you,
    Mom

  4. It is so difficult to find the balance in HFA children. Hopefully, home can be a respite from the strains of the day – but even then I find myself sometimes requiring my daughter to pitch in, quick being so messy, stop melting down. I promise that I am trying to create the space for her and all our other NT and ASD kids to be their authentic self, although my fear sometimes means I come up short. Thank you for helping me keep perspective.

    • If you will, drop HFA/LFA. It can be a bit silencing for all of ASD. It is probably difficult. We all do the best we try. I’m sure she appreciates you are trying. Dad wouldn’t let me, it is really difficult being not allowed. She is a happy writer. I wonder if this is meant for moms?

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