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.
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.
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.”
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer.Curator of Art. Founder of The Autism Acceptance Project. Mother of Adam. I like to write about our journey, musings, attitudes towards autism.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer.Curator of Art. Founder of The Autism Acceptance Project. Mother of Adam. I like to write about our journey, musings, attitudes towards autism.
