expression is not existence and other big truths

mariposa_camuflada

What do you see?

~

Yesterday morning, I read a blog post that set off an avalanche. It started slowly at first, an “Uh huh,” followed by a “Yes!” and then building to a crescendo of “Oh my God, that’s IT!” Before I knew it, thoughts and emotions that have been building and building came thundering down the mountain and there was nothing to do but give in – to the overwhelming power of the truths — the big, fat, even painful truths — that had been taking shape in my head — to which someone else had miraculously given life.

In her post about a prompted typing session with her mostly non-speaking daughter, Ariane shines a light on a basic, if terrifying reality — if a human being can’t DEMONSTRATE their knowledge in a way that is understandable to the majority of other human beings, well, we (the majority) feel just fine assuming that they must not HAVE that knowledge.

I’ve talked a lot these last few days about empathy. About the vast difference between the EXPRESSION of empathy and its very existence. And the fact that an *apparent* lack of the former does not negate the latter.

I’ve been gnawing on it for days. Worrying it like a thread between my fingers. I haven’t been able to let it go. And I still can’t.

I can’t let it go in part because perseverating on stuff like this is what I do, but mostly because, at its core, this is an issue of my daughter’s very humanity. Because truly, if we are able to convince ourselves that if autistic people are unable to DEMONSTRATE empathy to us in a way in which it is recognizable as such TO US, well, then they must be devoid of empathy, then we have effectively dehumanized autistic people. Go us.

And it’s funny really (in a not funny at all kind of way) that we talk so much about the inflexibility, the rigidity of those on the autism spectrum when really, isn’t it US, the so-called neurotypical population, who are stuck in this frightfully narrow rut of perception? Isn’t it us who insist that Autistics conform to our version of .. well, everything? Isn’t it us who are really so rigid in our thinking as to be capable of believing that other ways of processing / thinking / communicating / experiencing are wholly invalid? That’s pretty remarkable (and, in its practical application, horrifying) stuff, isn’t it?

Ariane’s post took me right to the crux of it – this difference between having / experiencing / knowing / feeling and comprehensibly expressing. And all that our insistence on the latter as proof of the former implies.

If you found yourself in a Bantu village in East Africa tomorrow and someone asked you, in Swahili, to tell them a bit about yourself, could you? Even if you could somehow discern what they were asking, could you find a way to answer them? How? Might you try speaking reeeeeeally slowly in English? Gesturing? Drawing?

And if not, if you couldn’t find a way to express yourself in a way that made sense to them, would that mean that you didn’t know who you were? That you had no sense of self because you couldn’t find a way to make yourself understood?

And following down that road, does an inability to convey your thoughts in a way that NT people can discern mean that you don’t *have* the thoughts you have? How about feelings? Empathy? Knowledge? Self-awareness? I’ll take a stab at those if you don’t mind … No. No, no, no and hell no.

No more than not being able to speak Swahili means that you don’t know who you are.

~

I recently came across something that I wrote in 2010. When I read it, I winced. I was embarrassed by it. I even thought, momentarily, of taking it down. But I didn’t. And I won’t. Because as I’ve said before, I don’t and won’t scrub this blog clean. It is what it is – an honest, and sometimes ragged and raw, representation of the evolution of my understanding of autism. And, I dare say my evolution as a mother, a friend, a citizen and a human being. Funny how the latter follow the former, isn’t it?

The post was about Christmas. It was about Brooke’s first successful visit, at age seven, to Santa. It was about her wanting to bring her list to him and her asking him where his lists were when we arrived. It was about what I *saw* as her first active participation in Christmas.

The words that I wrote served as a caption for a picture of her sitting with Santa. It looked like this ..

Brooke and Santa, 2010

(In so many ways, my baby’s first Christmas)

I am so sorry. To my girl, to everyone else who thinks and processes and communicates and PARTICIPATES differently. I’m sorry.

I’m sorry that I looked through a rigid, inflexible lens and that I allowed myself, with eight careless words, to effectively dismiss six Christmases – the six wonderful, special, momentous Christmases that came before that one.

I’m sorry that I would be so audacious as to imply that my girl’s participation was only valid, only real, only meaningful, if it happened on MY terms. If it included sitting on some stranger’s lap and making a list of things – for God’s sake THINGS! – that she wanted. I’m so sorry that I could ever have been so blind.

Three weeks after I wrote that post, I wrote another, very different post. One in which I had begun to see the folly of my perception. These were my words …

But the other night there was a hint at something. Something big. Something that knocked me on the head and reminded me that I have been looking at my girl through MY lens. And forgetting to look at the world through HERS. And that if I had been looking through hers, I wouldn’t have been able to forget that there’s always, ALWAYS, a whole lot more than what I THINK I see.

Later that night we lit her tree before bed. As we snuggled together in the warm glow of the lights, it hit me.

Brooke knew all along. She GOT it all along. For the millionth time, I was the one who didn’t get it at all.

I hope that when, God-willing, my girl reads Diary in years to come, she will forgive her Mama for stumbling. I hope that she will understand that I was – that I am – that I always will be – a work in progress. I pray that she will see that I’m trying hard to overcome years and years of programming – of ideas so far ingrained that I barely knew they were there. And I hope that she will know that she was the one who helped me do that – to peel away the layers one by one and to find the humanity below.

Thank you, Ariane, for starting the avalanche.

P.S. There’s a butterfly in the photo at the top of the page.

26 thoughts on “expression is not existence and other big truths

  1. It’s astounding, isn’t it? The gift these children give us. Priceless really. Not too long ago I came to the realization that my precious son gives me the opportunity to grow in ways I never considered, to be less rigid myself. I wouldn’t have him any other way.

  2. We all keep evolving. Sometimes we stumble in the process. Brooke will understand that you were – and always will be – a work in progress. She gets it. She loves her Mama and she knows she is loved and adored by you.

    Love you,
    Mom

  3. Of course she will understand. You have taught her that it is okay to stumble, and that nobody is perfect. She will look at all of these post remembering the love that you have shown her. She knows that you love her, that you are willing to fight for her, that you are trying to give her a world that works for her. What more can any of our children ask from us?

  4. It’s a process…for all of us. We learn, we grow, and we come to a place of greater understanding, not unlike the journey that our children walk themselves.

    I, too, was in a different place last Christmas, but it took my father reminding me of what was before me for me to truly embrace what was good and real and the meaning of it all. I shared his quote this week in a post and I’ll share it here, too, because it’s that important for me – for us all – to remember:

    “Jack doesn’t need a tree or wrapping paper to give a gift of greater value than anything we could ever find at the mall or the mart. He may not be able to articulate it, but he “gets” Christmas better than you or I. Just as God intended it, Jack’s gifts are neither wrapped nor reserved for a single, special day. Our loved ones bless us EVERY day with this indescribable feeling of joy, manifested by a simple smile or hug or word or touch. I defy anyone to list a gift they cherish more this year.”

    And he was right.

  5. But it’s so hard to see that, isn’t it? When there’s no interest at al in decorating the tree. No way of knowing what she wants. No chance in hell of seeing Santa because you just KNOW it will be way too overwhelming for your girl. Remembering the year before, when she perservated on the first present she got, and showed no interest in opening the rest. Wondering if this year will be the same. Worrying about the likely inevitable meltdown at the family dinner, because the house is just too crowded.
    You are further along in the journey, and the evolution than I. I can see why it would be huge that she wrote a list, or sat on Santa’s lap. I get that just because Brooke (or Cymbie) doesn’t experience Christmas on our terms, doesn’t mean they don’t. Or don’t find joy (like loving the first present so much, you’re done).
    But it’s hard. And it hurts. And many times, I selfishly feel gipped. Out of milk and cookies, Santa, letters and lists, and most of all, a “typical” Christmas morning.

  6. Great blog post today. You shouldn’t feel bad posting that. We all parents of autistic children make the same mistake at first. I know I did when it came to doing things. Then it hit me after sitting back and looking at was happening and made me realize I should be looking at things from her perspective. I now do that most of the time with her and yes it has helped our life greatly.

  7. Yes, yes, a million times yes. I totally agree that in so many ways, it is we neurotypicals that have pigeonholed them. My son has given me such a great open mind…I know I have far to go, but I’ve come a long way. The old adage stands…when we know better, we do better.

    Great job with this post…and don’t worry…I am sure Brooke will see your evolution and will be proud.

  8. Your journey is our journey, Jess. And your honesty astounds and inspires me. I will think about my own assumptions, today and each day, and make sure I see through the eyes of my children when I am trying to interpret, advocate and love them.

    Our kiddies teach us so much. Thank you for reminding me of that blessing.

  9. I wish I had half your eloquence, but as usual you’re able to express so beautifully something I’ve been thinking about a lot. At one point in the film about surfer Clay Marzo someone says “people don’t suffer from Asperger’s; they suffer from other people,” And I thought that is so, so true and sometime it’s me and my slow evolution that my son has to suffer through. It’s painful to think about just how slow–

    Karin

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  11. For my son Noah..Christmas i would redefine as oh look wow it’s a pretty tree, fantastic….his words not ours, his words although classed as preverbal..he loves trees, our decorated tree motivates him to speak.xx

  12. Awe yes… We are all works in progress. We all deserve “grace” from our fellow human beings.

    And, just as we all deserve grace, we must be willing to give grace back to those that look and do not see our children and other adults like them as we see them… Beatutiful from the inside out.

    Blessings.

  13. We’ve had some trouble at school lately, and I have been trying to explain what’s so different about this year, first grade, than last.
    Last night, at dinner with friends, it dawned on me.
    My son’s kindergarten teacher looked at the classroom through my son’s eyes. She changed her practices and demeanor and even the class schedule to make things easier for him. She wanted to know him, to meet him where he was. She saw the sweet boy who wanted to make friends and learn.
    This year, his teacher is patient and seems to like my son, which is a big start.
    But she wants him to change to fit into her mold, to meet her expectations for behavior in the classroom. She, unfortunately, sees a problem, not an opportunity.
    I wish I knew how to change that.

  14. I just read Ariane’s post (and now I’m a fan of her blog) and then reread this again.

    And it took me back to that day, ten years ago, when I sobbed to my sister that I’d have to “work on Miss M, and quick. She HAS to fit in. She’s not ready for school!” and my sister, who looked at my calmly and said, “No. The school may not be ready for HER. That’s where YOU start.”

    I finally get it.

    Forgive me. I’m a slow creature. Miss M is not. She’s been humming along perfectly at her own pace for years.

    Thank you, thank you, thank you.

    You’re changing the world, my friend.

  15. Thank you thank you. And thanks to everyone who gets that the neurotypical perspective is not the only bandwidth on the human spectrum. Self-awareness and other-awareness can grow for all of us all the time.

  16. I have Aspergers. My kids are on the spectrum, as is my husband.

    Thank you for such a great post. Thank you for seeing that, and talking about it, so that hopefully the idea will catch on to others.

    I have a physical disability as well as ASD, and I can’t get appropriate medical care because I can’t “talk” the way that I am supposed to. The sooner that people realise that we simply can’t always speak NT languages, but that this doesn’t mean that we have nothing to say, the better for all of us on the spectrum.

    (((hugs))) Your daughter is very lucky to have you as a mother. 🙂

  17. What a great post. I’ve often wondered about how hard we make our kids work to fit into the rigid boxes prescribed by the NT world. In fact I’ve sometimes pondered that we as a society probably have more to learn from our ASD-affected peers than they do from us. Now if only more people would come around to that way of thinking.

    In any case, I know I’ve said this before, you are too hard on yourself. No one could ever argue that you haven’t always had Brooke’s best interests at heart, every minute of every day.

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  20. This is so incredibly touching.

    I’ve never understood Christmas.

    But it means a lot to the people I care about. So that is what Christmas is about, to me. It is about the people I care about, and about what is important to them.

    So is that not understanding Christmas?

  21. I loved this post so much. Thank you for expressing so much better than I ever could almost exactly what I have been thinking lately. My son is 11 and has been using his communication device more and more and it is such a powerful and humbling experience to finally feel that I am getting to know someone who has been here all along. Thank you for taking the time to share these thoughts.

  22. Dare I say that being a role model as a work in progress allows Brooke to own and celebrate being a work in progress too. Woe is the day we stop learning…..

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