Writings

Like This

by Tim on November 22, 2010

Another discovery from my writing file.

When they ask, “How do you keep up with everything?”
show them pictures of him smiling with his therapists and teachers,
show them everything he could not do three months ago, and say,
“Like this.”

When they ask, “How does all this sensory stuff work?”
take their hands and stroke a purring kitten,
wrap them in an embrace, dance with a symphony,
bring them out into the sun and let it warm their faces, and say,
“Like this.”

When they ask, “How does your son being different affect your life?”
draw them a picture of a large dairy farm with endless herds
and one remarkable, dancing, purple, polka-dotted cow
whom everyone marvels and smiles at, and say,
“Like this.”

When they ask, “How do you make sense of his need for order?”
point to the heavens and the procession of constellations
and the orbiting planets and the traveling moon, and say,
“Like this.”

When they ask, “How can repeating the same thing over and over help him?”
show them the waves as they roll on to the shore,
recede back to the great ocean, and then return once more;
show them the rain falling to nourish the fields, and the water rising back up to the sky, and say,
“Like this.”

When they ask, “How does he communicate with pictures?”
show them the trees and the sky and the lilies of the field,
bring out photos of the Pieta, distant galaxies, and the helices of DNA, and say,
“Like this.”

When they ask, “How does it feel to speak to someone all day every day and have him never really talk back?”
Face the open air, kneel, and pray, and say,
“Like this.”

When they ask, “How will you deal with the future?”
show them the depth of his great blue eyes,
hum his favorite song and let them see his head fall to your shoulder,
and kiss him gently on his cheek, and say,
“Like this.”

And when they ask, “How do you parent a child with autism?”
Stand with your arms open, your chest out, and your head high, and say,
“Like this.”

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Autism Beatitudes

by Tim on October 11, 2010

I was skimming back through some writing I’d done a while back and stumbled across the following. Funny how you can forget you wrote something! I rather liked it and hope you do too. As with other things I’ve written, I wish to qualify this by saying that I’m aware I write from a parent and advocate’s perspective and that writing ‘on behalf of autism’ like this contains my own biases. I’d be interested – here or in general – in being called on my biases by any autistic persons who wish to do so.

These are meaningful to me as a parent, and I hope they are to you too.

Autism Beatitudes

Blessed are those who do not speak, for they shall teach us what lies beyond the limits of words.

Blessed are those who wholly focus on the simplest things, for they shall see wonders no one else can.

Blessed are the spinners, for they shall experience life from every angle.

Blessed are the picky, for they know exactly what they want.

Blessed are the stimmers, for they shall grow their wings and fly.

Blessed are those who always take the same path, for they are steadfast and true.

Blessed are those who are faithful to their rituals, for to them all the world can be a holy liturgy.

Blessed are those who repeat themselves, for they shall savor every sound and silence in between.

Blessed are the persistent, for they shall triumph where others have given up.

Blessed are those who are devoted to a single passion, for they shall explore depths no one has ever seen.

Blessed are those who memorize every detail, for they preserve that which would otherwise be forgotten.

Blessed are those who fight to be heard and accepted, for they shall safeguard the rights of all.

Blessed are those who watch and wait, for they shall discover and know and understand.

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A Prayer of St. Francis for Autism

by Tim on April 1, 2010

It’s April, so welcome to Autism Awareness Month! I wanted to start things off by coming up with something that would set the tone for the month, and I decided that if I was going to do that, I might as well do something completely different.

There’s a prayer attributed to St. Francis of Assisi – one of the most beloved prayers in Christianity. It has spoken to multitudes across generations as both a prayer and a simple, guiding set of principles of how we can transform the lives of others and the world for the better. Its other gift comes from how much its message has transcended religions and individual religious beliefs.

So it is obviously plenty good enough on its own without me mucking around with it, but I wanted to reframe it a bit to be more specifically about our daily lives whether we are parents of autistic persons or autistic ourselves. Even at the risk of profound arrogance in tinkering around with one of the great pieces of literature in human history, I did it anyway. You can decide whether it says something to you or if I should have just left well enough alone.

First, the original Prayer of St. Francis:

Lord, make me an instrument of Thy peace;
where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.
O Divine Master,
grant that I may not so much seek to be consoled as to console;
to be understood, as to understand;
to be loved, as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying that we are born to Eternal Life.
Amen.

I’m not sure how you follow that timeless classic, but here goes.

A Prayer of St. Francis for Autism
by Tim Tucker

Lord, let thy peace fill me up until I overflow;
that where people cannot speak, I may be their advocate;
that where anyone is rejected, I may extend my arms in welcome;
that where parents are heavy burdened, I may offer a word of comfort;
that where our children struggle, I may lift them up and cheer;
that where some see disability, I may reveal to them extraordinary gifts;
that where others judge, I may share with them my deep gladness;
and that where any are overlooked, I may help the lights of all to shine.

O Giver of These Gifts,
grant that I may not so much seek to be reassured as to reassure;
to be praised, as to praise;
to be accepted, as to accept;
for it is in all our uncertainty that we are inspired to hope;
it is in great challenges that we discover our greatest joys,
and it is in our community of wanderers that we find the way home.

Amen.

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The 439 Stages of Grief

by Tim on January 6, 2009

[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]

The 439 Stages of Grief

Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.

Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.

They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.

They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.

We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.

Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.

But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.

This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.

And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.

Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.

And this is the way it begins for all of us, with one, single, determined step.

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“What if he never talks?”

by Tim on December 5, 2008

[Note from me: I'm slowly writing a collection of essays and reflections that I hope to someday compile into a book. Over the last however long it's been, I've posted on this blog a few drafts of pieces I'm considering including in the book without actually calling any attention to them, but this time I will. This is a first, rough draft of one I wrote a few weeks ago. Feel free to comment, praise, pan, etc. My plan is at some point - hopefully early next year - to spin these off into a new web site, which will focus on the 'collection-in-progress' (still feels weird thinking of it as a 'book'). Anyway, more on that later. On with the show.]

“What if he never talks?”

This is a question that for a long time we could not bring ourselves to ponder, but it is one that used to follow us everywhere we went. J-Man could do a syllable here and a syllable there, at least enough for us to think he would really talk someday. But as he got older and his peers’ vocabulary exploded, we became disheartened. Then when children many months younger than him started really talking, we became depressed and often despaired.

The worst was seeing toddlers saying “I love you” to their mommies and daddies. We’ve never doubted that J-Man has always loved us without condition. But just as parents need to say it to each other every day, we’d love to hear our kid say it to us too. We became jealous of the other parents. We’d close our eyes and imagine what his sweet little voice would sound like if he could say it to us. And all of our imaginings left us in tears.

For months, everything was “kuh-kuh”, but at least those things had a name. Eventually there came “muh” and “nuh” and a few more. He made up his own versions of one or two-syllable words and we came to understand the piecemeal language he had created for himself. Near age three, he tested almost two-thirds of his life behind ‘typically-developing’ children – barely at a 12-month level – but he was communicating, little by little.

A few days ago, I was talking to a mom whose son is nearing five. He’s completely non-verbal. He has never uttered a single sound that wasn’t a moan or a shriek or some other shapeless noise. She said the following words, and as I type them I can still feel freezing water creeping through my blood as painfully as when I heard her say them.

“What if he never talks?”

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