Autistic Mother Pride

Filed Under (Poetry) by Estee on 22-01-2015

This might be worked on some more… I’m writing today and flipping through my binder of writing. I found this unedited poem as part of a poetic essay I was attempting last year. Please note I am not well-versed in the art of poetry, but enjoy the process of trying. I think it’s fine to share it as is. I might consider it for that horrid month of April and again for our Pride Parade in Toronto this year:

Pride has this mother
protecting
Pride!
threaded by a label
and stitched with love

Claimed
As Kanner did
on the great
scientific mother-ship;
He said they didn’t live before
as the “feeble-minded”
behind 19th century doors
of confinement
Pride!
coalescing
fragile identities
p-u-s-h-i-n-g
for new definitions
to be borne.

Adam’s Disability Poem

Filed Under (Poetry) by Estee on 15-01-2015

stock-footage-disabled-person-in-an-electric-wheelchair-approaches-stairs-high-angle-view

A Disability Poem
By: Adam Wolfond

big stairs laugh at him..
Because hard to go up when you got just a wheelchair to get around in..
I think the long road will be hard for him to travel..
He feels like people dont understand him..
I understand him like gains to be made in our lives just want to be interesting and loved totally..
I could strive and make lives better

This poem was written by my 12 year-old non-speaking autistic son. He communicates on an iPad.

Goodnight Moon

Filed Under (Institutions, Love, Poetry) by Estee on 26-10-2012

Goodnight Moon
in the rocking chair,
your body cradled in the
safe bed of my arms.
Now your cherub cheeks
fall.
Soon a deepening voice
will sweep like a brushstroke
and we’ll forget

pointing tiny fingers finding little mice
tracing the arc of the cow
to our song;
a coterie

How can time move forward
in your face,
vibrate in your body
yet remain still in your room?

A page turns slowly,
please slowly.
Your head now fits
In the crook of my arm
before you sleep.

In the schoolyard
we play in chilly air.
Blustering wind tears leaves
like perforated certainty.

The helium voices chatter
on the opposite side of the park.
You silently climb the slide.

They found the same mice,
traced the same cow,
recited the same rhymes and
dreamt of red balloons.

Still now…
In a special school.
For safety?
Whose safety?
Maybe we are safe
I can’t say for certain.
I need more time.

Bulldozers nearby
tear down and
build up concrete progress.

What are we making?

Remember
the other little children behind locked doors
who never came out,
who never saw parents,
who were never cradled to goodnight,
who slept under the same moon.
Was it really so long ago?
This echoes.

Huddled are we –
rocking,
enveloped by quiet night
in our own peace.
Slowly, please slowly.
I will love you forever.
Goodnight.

My Bowl

Filed Under (Inspiration, Poetry, Writing) by Estee on 14-04-2011

Today happens to be National Poem In Your Pocket Day. On my Twitter account, I’ve posted a couple — one I wrote and one which is just a quote I really like.

I just moved some things around my house today. It’s spring and the change of season beckons me outside to set up furniture and plant seeds. On the inside, I’ve got to shuffle things up. I’ve got to switch things around so I feel at home again, but also renewed in my space. I moved a bowel to my dining table. It’s been sitting on a glass shelf from the time I moved into my new house last year. It looks okay there, a light pink blush glowing on the inside. Then, as I moved some books to another corner of the room, I opened to this page quite coincidentally:

This story is about a bowl.
A bowl — waiting to be filled.
If what I have just written makes no sense to you,
I am not surprised.
If I had known in the beginning what I was looking for,
I would not have written this story.
I had to trust there was a reason I had to write,
and I didn’t have to have it all figured out in order to begin.
I would find what I was looking for
along the way.
— Sue Bender, Everyday Sacred: A Woman’s Journey Home

It’s a nice way to sum up why I think I write here, on scraps of paper, in my daily journals. I do have faith in reasons; in my blushing bowl on the dining room table.

Push

Filed Under (Poetry) by Estee on 22-11-2010

A little something I’m working on:

Push

By: Estée Klar

I pushed you into the world.
I wanted you.
I’m sorry.

The white hospital room and metal equipment
fluorescent lights and beeps
no air
until your lungs were suctioned
over one minute.

I waited
anxiously,
afraid I would never meet you.
But you cried
as nature intended,
as medicine assisted.
I’m sorry.
I’m glad.

You are eight now.
Goodbye my toddler –
the one I weep over.
Time barged in.
My toddler
proclaimed autistic
at 18 months.
The number of life.
Chai.

When the life as you now know it began
behind closed doors with strangers –
enthused young therapists –
to heal the world
in tight jeans
and you, their mission.

Your life started for me when you kicked.
I watched your foot underneath my skin,
when you held your head up for the first time,
from the crook of my arm,
as you sucked the nutrients you needed
from my full body
releasing love.

Your eight-year-old head
still soft
I put my face in your hair,
and hold you for fun,
in the crook of my arm
(sometimes you smile).
But I think
that you can’t remember.
Your writhing body pushes
to climb
the growth chart,
we marked last year –
and away.

Since I pushed
the way I always do
through life
to life
to you,
I say daily goodbyes.
Ah, your little hand in mine.

“Bye-bye, yes,” you say anxiously.
Difficult words for you to speak
You try so hard.

When the people came —
as they do in our autistic life —
the ones who needed to close the doors
like heavy iron gates
I heard you wailing.
My bosoms leaked
my arms yearned
my heart
ached.
I should have done something to protect you.
I tried so hard.

Preschool.
Leaving you in the schoolyard
you circled perimeters
maybe watching,
for comfort,
I waited.
“It’s time for you to say goodbye,”
the teacher said.
I wasn’t sure
if you were happy,
if I should have yanked you home.

You tried so hard —
with loud children
a crowded room
you found quiet corners
books
and alphabet letters
that you wiggled in front of your eyes
a dance from A to Z —
your solace.

You are my boy —
the one who read book spines
from the shelf you laid beside
before you could walk.

You were pulled away,
told to sit down,
taught to use picture symbols,
to kiss the baby doll.
That would satisfy them —
plastic affection,
obedience
and oh,
to communicate.

Kindergarten —
a quieter place
little shoes lined up in the hall.
You learned your routine,
to cleanup,
put in your chair,
sit with kids.
Those kids —
fast talking, moving, sharing tea cups, Lego, dolls
like the blur of the ceiling fan.
They didn’t come over.
I ached for you,
for me
they didn’t see.
The fan above
kept you company
and you waved hello.

You made things
you showed me your love of animals and dinosaurs
you made drawings with details
that your peers couldn’t draw.
Their voices were louder,
their hands stronger,
thicker lines on paper —
typical lines.
So people praised them
while you circled the room
trying not to be seen.

You see things
you know things
you can’t say things
very often.
Wordless
yet full of hums, clicks and whoops,
you uttered many
like jazz
I seemed to understand.

Your words come sometimes
you push out,
the assumptions
about a humming boy.
I have to pay attention
or the soft words uttered,
cannot be retrieved
from vanishing speech bubbles
above superheroes
poof.

The sounds you made when dad and I split —
your body spasming relentlessly —
I feared.
Probes placed on your body, your head,
that precious cranium
from inside my flesh to the crook of my arm
they prepped and monitored
for seizures.

Your body
protesting change
in the brittle cold of February
thrashing and falling
with pain,
confusion –
I’m so sorry.

We calmed into
the sun of summer
warming us into fall.
We grew
from under
dead leaves
to fertile soil.
Ripe green shoots
of Hostas unfolded.

You have started a new school.
You leave every morning,
your soft lips kissing mine
my face brushing cherub cheeks
thinning
your body stretching
in a monogrammed sweater.
The toddler a shadow of you,
the boy taking over.

I see a future in your face,
a history already written.
I say goodbye —
the smooth soft skin
sweeping across mine.
The door angled
you exit
gentle air wafts
as I close.

Oh, The Places You’ll Go!

Filed Under (Inspiration, Poetry) by Estee on 22-09-2010

I’ve been told that Adam adapts well — it’s not something we hear when it comes to autistic kids.  It’s only been a couple of weeks now and he seems happier and settled in his school. As for myself as Adam’s mother, it settles me. For the first time ever, Adam has a desk that flips open, and I’ve already had a chance to see the stacks of binders in his desk. I can’t imagine his little body, for he is the smallest kid in his class, carrying those big things. He has a cumbersome communication device (Vanguard), because he cannot talk fluently. There are always many things for him to take wherever he goes now. It is not a light load.

As Adam becomes more independent, my views of him, of our lives and parenthood are shifting. This is not a journey I will ever attempt to predict. So much has changed in our lives, and now that Adam has switched schools, these feelings are  punctuated. I feel that we have reached the second phase or our autism journey, if we can parse life into phases.

These past couple of weeks we have been reading an array of Dr. Seuss’ stories. Every night, I ask Adam to choose which one he wants me to read to him. This evening, he chose Oh, The Places You’ll Go! It is the wisest poem I’ve read in a long time. I thought I’d copy some of the lines because I became rather pensive with all of these changes going on — with Adam’s growth,  maturity and the road ahead. While I was reading this story, the lines of the film The Curious Case of Benjamin Button also popped into my head.

What an important a lesson it is for Adam, as it is for us as parents who sometimes get caught up in the idea that our children won’t end up doing or being anything, to think again; how critical it is to see all the autistic adults contributing to society in their own unique way, while also re-evaluating what “success” really means to us. It reminds me, also, of how important it is to have mountains to climb.

 Enjoy this abridged version as food for thought:

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.
You’re on your own. And you know what you know.
And YOU are the guy who’ll decide where to go…

…You’ll be on your way up!
You’ll be seeing great sights!
You’ll join the high fliers
who soar to high heights.

You won’t lag behind, because you’ll have the speed
You’ll pass the whole gang and you’ll soon take the lead.
Wherever you fly, you’ll be the best of the best.
Wherever you go, you will top all the rest.

Except when you don’t.
Because, sometimes you won’t.

I’m sorry to say so
but, sadly, it’s true
that Bang-ups
and Hang-ups
can happen to you.

You can get all hung up in a prickle-ly perch.
And your gang will fly on.
You’ll be left in the Lurch.

You’ll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you’ll be in a Slump.

And when you’re in a Slump,
you’re not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare stay out? Do you dare go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.

…Oh, the places you’ll go! There is fun to be done!
There are points to be scored. There are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You’ll be famous as famous can be,
with the whole wide world watching you win on TV.

Except when they don’t.
Because, sometimes, they won’t

I’m afraid that some times
you’ll play lonely games too.
Games you can’t win
’cause you’ll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you’ll be quite a lot.

And then when you’re alone, there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on…

…On and on you will hike.
And I know you’ll hike far
and face up to your problems
whatever they are…

And will you succeed?
Yes! You will, indeed.
(98 and 3/4 percent guaranteed)…

…So…
be your name Buxbaum, or Bixby or Bray
or Mordecai Ali Van Allen O’Shea
You’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!

 

This is the video clip where Benjamin’s daughter is reading a letter written to her, from him. You can choose to make the best or worst [of what is handed to you in life]. “I hope you make the best of it.”

Mind-Body Problem

Filed Under (Acceptance, Poetry, To Get To The Other Side) by Estee on 30-03-2010

images

When I think of my youth I feel sorry not for myself

but for my body. It was so direct

and simple, so rational in its desires

wanting to be touched the way an otter

loves water, the way a giraffe

wants to amble the edge of the forest, nuzzling

the tender leaves at the tops of the trees. It seems

unfair, somehow, that my body had to suffer

because I, by which I mean my mind, was saddled

with certain unfortunate high-minded romantic notions

that made me tyrannize and patronize it

like a cruel medieval barn, or an ambitious

English-professor husband ashamed of his wife —

her love of sad movies, her budget casseroles

and regional vowels. Perhaps

my body would have liked to make some of our dates,

to come home at four in the morning and answer my scowl

with “None of your business!” Perhaps

it would have like more presents: silks, mascaras.

If we had had a more democratic arrangement

we might even have come, despite our different backgrounds,

to a grudging respect for each other, like Tony Curtis

and Sidney Poitier fleeing handcuffed together,

instead of the current curious shift of power

in which I find I am being reluctantly

dragged along by my body as though by some

swift and powerful dog. How eagerly

it plunges ahead, not stopping for anything,

as though it knows exactly where we are going.

—–
— poem by Katha Pollit (winner of the National Book Critics Circle Award)

An Artist’s Life

Filed Under (Poetry) by Estee on 11-11-2009

Hovering like barometric weight,
each morning before I wake
an effort looms.

It was your idea,
your invitation
upon the podium I stood.
You wanted words of hope, I thought –
Of the little engine that could.

Lauded once and quoted some
for better and for worse.
There I learned but also burned
A scorch within the wood.

Shaded once by gilded trees
like cold metal – forlorn.
The artifact, the word, the thought
A dropped seedling in the dirt.

Cut it down, say no more,
words of love be gone!
Do not remind us, this plight we lead,
or of dreams – you cling on.

Be gone you feckless writer!
Just who do you think you are?
If we smite you and apprise you,
You can go — afar.

Of books, of words of thoughts and form,
some mold and shape and bend.
With exaltations and deflations,
An artist’s life is spent.

— by (me)

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.