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@tannersdad (on twitter)

… and if you know of others that I’m missing PLEASE add them in the comments! Their voices are so important.

Thank you!

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February 7, 2012

pretend

Filed under: Uncategorized — by jess @ 5:38 am
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“I am neither an optimist nor pessimist, but a possibilist.”

- Max Lerner

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“Child has no discernible play skills.”  

~ Neuropsychologist #1

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“She came to us with absolutely no functional play skills.”

~ Integrated preschool teacher

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“Child presents with a marked lack of joint attention. There is no attempt to share enjoyment or engage with others. “

~ Neuropsychologist #2

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“I gave Clara a nice hug.”

~ Brooke, 2012

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February 6, 2012

an innocent question

Filed under: Uncategorized — by jess @ 5:54 am
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It was an innocent question.

It arrived without fanfare – nestled quietly in a score of others asked by my dinner companion that evening.

She was interested. She wanted to learn about autism – to figure out what it means to Brooke – to our family, to so many others.

I did my best to answer it, just as I had the others – the answerable ones – How does autism affect her? What kind of school does she attend? Will she outgrow it? What kind of support does she need?

In so very many ways – language, communication, social interaction, rigidity, anxiety, humor. Her neighborhood school with a full-time aide. No. Over time she will amass tools to help her mitigate the challenges that it brings, but her brain will always be wired differently. The short list – a full-time aide at school, ABA, speech therapy, OT, social pragmatics lessons and groups, a literacy specialist, a special education teacher for one-on-one math instruction, a neuropsychologist, a developmental pediatrician, medication for anxiety and attention, conversations like this one. 

Those I can answer in my sleep.

But this one.

I stumbled trying to corral the enormity of it.

How does one translate into sounds, letters, words, sentences the Desperate Fear – the Abject Terror that taps us on the shoulder at 3 a.m. or the Even More Desperate Hope – the Unrelenting Optimism that we carry every day like a backpack full of stone?

How does one pour the ocean into a thimble? 

How?

I t0ok a sip of my wine.

Slowly, deliberately I dabbed my lips with my napkin, then took my time folding it into a perfect rectangle before laying it down carefully across my lap.

All the while the words swirled around us, swooping up and over the table – twirling, twisting, flying by in a blur – autumn leaves on an all too familiar wind.

I sat up straighter, steeling myself against the gathering storm.

Slowly, Jess. Slowly.

There’s no rush.

Take your time.

It was an innocent questions.

She wants to learn. 

Slowly, carefully I plucked the flying leaf-words from the air. I chose carefully – only the ones that looked sturdy enough to hold the Desperate Fear and the Even More Desperate Hope without breaking – not them, me – wide open at the table. I refolded my napkin to buy time as I put them in an order in which their meaning might be understood. Finally, I had no choice but to release them back into the air.

They came out as if in someone else’s voice – a faint echo trailing behind each one as it hung in the now gaping space between my companion and me.

But there was no question that they’d come from my mouth. Because two days later as I type I can still taste them – their dull, metallic, heavy residue lingering on my tongue.

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It was an innocent question.

It arrived without fanfare – nestled quietly in a score of others asked by my dinner companion that evening.

“So what does the future hold for Brooke?”


 

 

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