upside, 2008

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Care to join me on a walk down memory lane?

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The following posts were written back to back in June of 2008. Brooke was five, and our lives were very, very different.

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June 5, 2008

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We were at the playground above the soccer field again last week, you know .. NOT playing soccer .. when we bumped into a dear friend’s father. I didn’t know him, but he was watching my friend’s young daughter while her son played soccer (on the team that Brooke was supposed to be on). The little one came running over to me on the playground, and my friend’s dad came over to introduce himself.

 

When he saw Brooke in her team shirt, soccer shorts, cleats and shin guards he made the (not unreasonable) assumption that she should be, well, oh, I don’t know .. playing soccer, maybe .. with the other kids. He smiled as he cocked his head her way and asked if ‘someone had a little attitude’ this morning. I bristled a bit, but kept in check and smiled back as I explained the situation and why we were taking some time out.

 

He was very kind and very inquisitive. He wanted to be educated about autism and what it actually means for Brooke. He asked a lot of questions. Since I’ve dragged out my soapbox and preached about how important awareness is to our kids (read more here) I hardly feel like, no matter how emotional I may be at any given moment, I have the option of shirking my responsibility to educate people who are asking to be educated. And so I did my best to answer his questions as thoughtfully as I could. And then he threw me for a loop.

 

“What,” he asked, “is the upside to her autism?”

 

No, seriously. That’s what he asked. I stammered. I stuttered. I bit my tongue because quite frankly the first thing to come to mind was, “Are you (expletive deleted) kidding me?”

 

But he was still looking at me with a kind, open face and he was waiting patiently for me to respond to his question. So I fought impulse number two which was something along the lines of, ”Well, gee, if she were in a wheelchair we’d get to park in those great handicapped spaces, but bummer, she doesn’t get that.”

 

Think, Jess, think. So I did my best to talk about how the ability to maintain a single minded focus had produced some of the world’s most talented and influential scientists, musicians, writers, researchers, artists, etc. I told him that it’s often said that Einstein was likely on the spectrum. I didn’t even remember to mention Beethoven and Newton. I was fumbling.

 

As we spoke, I watched Brooke. She was digging in the sand alongside a group of slightly older girls. They were all chatting happily and teasing and joking with each other. And she was digging. Alone in the middle of a group of girls.

 

So what is the benefit to Brooke? What about having autism is positive for Brooke?

 

Well, there are all of the wonderful people that are in her life, I suppose. I can’t discount the amazing benefit of having had all of these dedicated teachers and therapists caring for her. Many of them are truly as invested in her success as we are. She is surrounded by love and lavished with praise all day every day. Hey, that’s good, right?

 

I wish I could say that there is more in it for her. But at the tender age of five, I have yet to see much of an upside to autism for Brooke. Most of the upside is what I see her do despite autism, not because of it.

 

But I can say a lot about what it has done for those of us who love her.

 

The day that we got the initial diagnosis, Luau and I sat in the parking lot of the medical building and tried to absorb our shock. I remember sitting in the car and saying to him through tears, “If nothing else, no matter how this all turns out, the experience will have made us all better people – you, me, Katie, all of us.”

 

Well, it did. And it did in spades. We are all more sensitive, more aware, more caring, more invested, more connected and far more compassionate than we ever would have been without having had the opportunity to experience the world differently. It feels awfully self centered to put it in those terms, but I can’t deny the truth in it.

 

Katie’s homework this weekend was to begin to write what her teacher is calling their ‘family vine’. For each of her family members, she had to write three unique contributions we each make to the family. If you’re wondering, I make all the money, buy her clothes (and shoes), and make her feel better when she’s sad. Thankfully, not in that order.

 

Brooke, she wrote, makes us laugh, gives us love, and makes us better people and better friends.

 

Amen.

 

~ Oh, and a post script. That picture up top? This is a child who wouldn’t jump from a two and a half inch mat to the floor eighteen months ago. Baby steps have turned into leaps and bounds (literally). I now have my heart in my mouth each time that my little Evel Knievel takes flight, and I couldn’t be happier!

 

(Click on it if you’d like to make it bigger!)

 

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June 9, 2008

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“Rabbit’s clever,” said Pooh thoughtfully.
“Yes,”said Piglet, “Rabbit’s clever.”
“And he has Brain.”
“Yes,” said Piglet, “Rabbit has Brain.”
There was a long silence.
“I suppose,” said Pooh, “that that’s why he never understands anything.”

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We have a crystal light fixture in our upstairs hallway that throws its light outward onto the ceiling around it. The light feathers out from it and creates an intricate pattern of light and shadow on the ceiling.

This morning, I found Brooke lying down on the hard wood floor beneath the light. I sat down with her and she shifted her head onto my lap but continued to stare at the light.

‘Brooke, what do you see?’

‘I see the music.’

And she began to sing very softly.

‘Twinkle twinkle little star / How I wonder what you are / Up above the world so high / Like a diamond in the sky / Twinkle twinkle little star / How I wonder what you are’

Her small sweet voice was like the smell of baking bread. It wrapped itself around me like a warm blanket and left me wanting more. But she was quiet again, staring at the light.

In the light she sees the music.

Did I say I couldn’t identify the upside to her autism?

Maybe, as my dear cousin so lovingly reminded me after last week’s post, I just need to start paying closer attention.

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11 thoughts on “upside, 2008

  1. I remember these posts so clearly and I remember, too, all of the upsides of Brooke’s autism! She’s an amazing little girl!

    Love you,
    Mom

  2. My little girl has just been diagnosed with Aspergers today. Just knowing her for the past almost-7 years has been a journey. And having friends with kids on the spectrum has made me realise that kids (and people in general) can’t be judged, and shouldn’t be. They should be appreciated for their uniqueness. Brooke’s smile is amazing. My daughter’s is too. They both have many qualities that, while odd, are amazing. And just being around them and knowing them, make us better people. They remind us every day that it’s okay to enjoy spinning in circles, and seeing the world differently 🙂

  3. What a beautiful post, not only to see her uniqueness then, but to remind us of all the wonderful, glorious leaps and bounds she has made since then! There is hope, my friends, there is hope!!

  4. It’s hard when well meaning parents of typical children ask questions that are so loaded without realizing it, but I think your responses and realizations are so wonderful. My little girl is still only 3, but I can’t tell you how many times I have seen her sit at the edge of the playground poking in the dirt or picking up acorns while her peers are playing together.

  5. When we were going through testing for ESE placement I was asked by the school social worker what my son’s strengths were. My mind was blank. I told her I don’t know, I’ve spent so long trying to manage what he can’t do that I don’t really know what he can do. It hit me at that moment that I had spent 10 years focusing on what difficulties,barriers and deficits my son had and had not worried about the greatness of him. It completely changed my viewpoint. I will no longer focus on the negative, that is what the experts are for. I will spend the rest of my life helping him grow and realize his greatness.

  6. autistics have very mild super powers..my ASD boy’s supernose is repelled by strong smells, like coffee, but he loves sniffing lotions, etc. because his nose picks up more nuance (he and the dog relate)…and he is amazing in art museums, because he can see things we miss, and feel everything the artist was trying to say…he explains the art to me with great insight, having never had an art history class. Touch, too: while a shirt tag feels like a razor on his neck, likewise lying on a fur rug sends him into joyous ecstasy. Super powers could be a drag for Superman too, but they made him special.

  7. So many ups and downs for our girl and our family. The greatest “up” is that our girl was born and she was given to us!

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