First... Then... poems from planet autism by Melinda Smith

If I were giving out prizes for literary achievements for 2012, I would have awarded Melinda Smith's book "First... Then..." as a discovery of the year in the poetry category. I have first come across Melinda's poem which gave the title to this unique book back in September 2011 (you can read my old blog post as well as the poem here) and was eagerly awaiting for the book to be published.
Imagine my delight when the book arrived from the publisher.
I have greedily swallowed it in one go, then started re-reading, piece by piece, randomly opening the pages and discovering new meanings and finding new food for thought.

This book of poems is all about life with autism. It gives a deep insight in what it is to be a parent of a child on the spectrum. But not just that. As the title suggests, you will hear different voices from planet autism, this planet which is so close and so distant at the same time. Some of the poems speak for those who have no voice to speak for themselves, like my non-verbal son.

Melinda Smith writes in the foreword to the book that she has been "engaging in the time-honoured creative practice of standing in the shoes of my fellow humans in the hope that we may all start to better understand each other."

I have read "First... Then..." poem many times, and each time it makes me emotional, as it is true on so many levels.

Or take "Brain Weather (Autistic Meltdown Ground Zero)":

When was it that       your frontal lobe
Cauterised      itself against your     will
leaving you endless     automised local           storms
with no way      to blow them    -selves out?

When my son Sasha has meltdowns for no apparent reason, I can sense he's sometimes as bewildered by having them, as if they truly come and go against his will. If he were verbal, he might have vented his frustration in a rant, but he doesn't have this luxury, the inside storms cause the meltdowns.

I have also written about "Autistic Acrostic" earlier last year and it still strikes me as a powerful poem. This is another poem about which I'd like to say: I wish I wrote it. It is about me. About the way I often feel helpless, vulnerable and desperate. In such a short space Melinda managed to encompass the world.

Melinda has a great gift of writing on behalf of her fellow humans. Like any great writer, she is full of compassion and understanding. Reading "Autistic child with acute auditory processing disorder" allows you to gain an insight on what it feels when you have a sensory overload:

"at a birthday party, buried under cushions and wailing like a siren
trying to say I can't stand it, the music and the voices
are tearing at me, pecking me apart"

We don't do birthday parties anymore, Sasha's or any other child's, they are an instrument of torture for him and what is the point of a party if you cannot enjoy it.

"in my bedroom after school, kicking my baby sister in the face
trying to say go away, go away, you're noisy, you're unpredictable
I've been clinging to a cliff face for six hours
and you're dangling yourself from my ankles"

That is exactly how Sasha feels, he's been enduring the school for hours. The last thing he wants when he comes home from school is the attentions of his little brother. And though he doesn't kick his younger brother, he doesn't welcome his embraces either, especially after he arrives home from "work", from being surrounded by a group of adults and children, some of whom can be very loud and noisy. And yes, anything or anyone unpredictable could be scary and uncomfortable.

The rhyme and style of "What the child hears" reminded me of Eric Carle's soothing rhythms of "Polar bear, polar bear, what do you hear?". In a way it is a homage to a children's favourite, with the same rolling sounds and a chain of animal characters.

"A prehistory of autism" is simply beautiful. It was inspired by Temple Grandin's quote "The first stone spear... was probably invented by an Aspie who chipped away at rocks while the other people socialised around the campfire". Each verse is a story in itself, creating a portrait of a prehistoric human. Clever and imaginative.

Melinda Smith takes the traditional metrical patterns of poetry and extends them to the breaking point, when they acquire an aesthetic virtuosity. Rhyme, assonance and alliteration work to evoke emotive responses from the readers. Each poem challenges our understanding of autism.

Each poem tells a story and is an inkling of what it is to inhabit the planet autism.

"I prefer" (to read the poem in full, please follow this link) is written from the point of view of a child with autism, and I imagine it could have been my son's litany and invocations of preferences:

"(I prefer)
torture to haircuts
libraries to birthday parties
standing ankle-deep in ocean...
looking at things out of the corner of my eye...
death to dentist visits...
not to see my school friends outside of school...
truth to sarcasm
home

to be left alone"

Melinda Smith is an inspirational poet and a linguistic virtuoso. She is a unique voice from planet autism.

Autistic Acrostic by Melinda Smith

Autistic Acrostic

In Autism Poem on August 5, 2011 at 4:54 pm

This poem is for all of us ASD parents who have had a ’moment of clarity’ in the middle of one of their child’s meltdowns.
Incidentally, the poem is an acrostic, meaning the initial letters of all the lines spell out a word or message. Can you read what it is?

Autistic Acrostic

Any day now, it will lift.
Under your mask of howls, I see
Two knowing eyes reproaching me,
Incensed that I should try to shift
Some blame, for this, our hell, to you.
Mummy feels like howling too.

First published in Quadrant, Volume LIII, No.4, April 2009

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There are days when I feel like howling too. There is always a feeling of guilt, a deep ache: would I have been able to prevent my son's pain and frustration? What if? What if? Is it my fault?
Sometimes when I don't sleep for several nights in a row, when my son's sleeping disorder affects him to the extreme, when he is being very volatile, challenging and difficult, I also feel like running into the wilderness and howling like a she-wolf at the Moon in frustration and anger: why?

Melinda Smith speaks for me and for all Mums of children with autism.

If you are a parent of a child with autism or if you just love poetry, you might have heard that Melinda Smith's book "First... Then..." is out. To read more about the book, please follow the link.  It will give you all the information on how you can buy the book.

I wish I could come to the launch of the book, but as it is impossible, I stretch my arms for a very warm hug across the world to say Congratulations and Thank you for being the Voice of Autism!

P.S. This poem has been reposted with the kind permission of the author.

Don't call me a bloody nuisance (a kind of a poem)

This is not exactly what I would call a poem, it is more of a meditation, self-induced during the last sleepless night when Sasha was showing the world how frustrated he is by screaming in the empty hall and banging the door at 3am.

Don't call me a bloody nuisance, Madam,
When I dance and laugh in the shop.
The shelves whirl with me, the biscuits smile,
Your shopping cart has stopped my dance,
Who's a bloody nuisance then?

Don't call me a f...ing idiot, Sir,
When I flap my arms in the coffee shop,
I'm excited at the sight of a million of bubbles in my coke.
Did you know how many bubbles exactly hide in my glass? No?
Who's a f...ing idiot then?

Don't say I have no manners, old gent,
When I scoop the ice cream with fingers.
It feels good and tastes better this way.
You farted in front of my Mum in the queue,
Who has no manners then?

Don't tell me I am a spoilt little brat, strange woman,
When I have a meltdown in the train station.
That passing train could have taken me to the faraway land.
I saw your daughter stick a chewed gum to the bench.
Who's a spolt little brat then?

Don't laugh at me, "Non capisce niente", young Italian boy,
I do understand what you said.
I can speak in my mind, but words die without being said,
Did you hear my inner voice? No?
Who doesn't understand much then?

Don't scream at me, Mum, when I hit my head
 And bang the doors in the night.
You know I love you,
And I know that you know,
But I need to vent my feeling and angst.

I am who I am,
I watch, I observe,
No criticism passes my lips.
Look around you at this "perfect" world,
Now who is the first to throw a stone at me?

Public Display of Autism (poem by Tina Moreland)

Public Display of Autism
by Tina Moreland

If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order.

If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she sees it everyday.

If dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke.

If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how.

He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today.

If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple.

Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand.

No, it’s not bad parenting. Discipline won’t help.

This is autism, it’s his life. Don’t judge him, he’s not judging you.


I came across this poem yesterday, and thought it is a very poignant and true account of what it is to live with a child on the spectrum. Sadly in our day and age there is so much ignorance about autism. When you experience the stares and nasty comments first-hand, it could be heartbreaking. With time you feel like your are growing a thicker skin and learn to ignore the nastiness, but still there are times when the defensive armour is broken and someone's unkind remark about your child and your apparently non-existent parenting skills becomes excruciatingly painful.
Don't judge us. Don't hurt us. Don't be snobbish in your ignorance and smug about your perfect children. We are good parents.

First... Then (an amazing poem by Melinda Smith)

First…Then…

First change nappy
Then Thomas the Tank Engine

First clothes on
Then sandpit

First wash hair
Then chocolate frog

First the only baby crying all night in the hospital
Then the only baby wailing for the whole of mothers’ group
First the only mother convinced her child was permanently angry
Then the only one holding him in her arms and doing deep knee bends to calm him down

First thinking it was normal to scream until throwing up whenever we changed routine
Then shocked when I realised other families didn’t have to live like that
First astonished he could read at eighteen months
Then astonished at his shrieks every time his baby brother cried
First proud of every fact he could recite about the planet Jupiter
Then wondering why he needed twelve weeks of physio to learn how to jump

First hair cut
Then play with spray bottle

First stop biting Mummy
Then play with sliding door

First poo *in toilet*
Then flush

First letting his father talk me out of it
Then talking myself out of it
First knowing those therapists just didn’t get my child
Then googling autism with a chill in my heart
First joking about ‘our little Rain Man’
Then realising the joke was on me

First paralysis
Then fear
First incomprehension
Then overload

First Music Therapy
Then Homeopathy
First Triple-P Parenting for Parents of Children with Disabilities
Then Encouraging the Reluctant Eater
First Occupational Therapy
Then the social worker
First trusting the system
Then realising the system didn’t care enough or have enough money

First sit at table to eat
Then spinning with Mummy

First swallow medicine
Then build washing machine from cardboard boxes

First reading lots of parent testimonials
Then feeling like scum for not doing six hours of therapy with him every day
First wonderfully affirmed by Welcome to Holland
Then convinced Welcome to Holland left a lot of shit out
First talking to happy well-adjusted mums of older kids on the spectrum
Then terrified our family wouldn’t survive long enough for our kids to get that old
First poring over Autism and Asperger’s Syndrome for those who love and care for three-to-seven- year-olds
Then realising the only book I needed to read was The Curious Incident of the Dog in the Night Time

First joining support groups
Then walking out of meetings because the horror stories people told at them could not possibly be true
First counselling
Then drugs
First sobbing to my friends
Then avoiding my friends and hating their normal uncomplicated children
First hearing that carers of autistic children are as stressed as soldiers in combat
Then bawling my eyes out

First thread the beads on the string
Then letterbox-counting walk

First stay at special needs soccer for ten minutes
Then computer time

First nearly destroying my marriage
Then clinging desperately to my marriage
First regretting the second child
Then realising the second child would probably save us all
First wanting my husband to see things my way
Then grateful he didn’t
First mourning my old life
Then understanding you never really get it back anyway
First obsessed with getting the whole family to accept the diagnosis
Then learning to take what help I could get and live with the elephant in the room

First shame
Then resentment
First desperate for pity
Then desperate for respite care
First whining
Then laughing

First crawling through it
Then writing about it
First today
Then tomorrow

© Melinda Smith 2011

Written with the financial support of artsACT

I wish I wrote this beautiful poem. Not everything in this poem applies to us. Sasha was not different from other babies when he was little, it is only around 18-24 months that we started to notice he is regressing. And he never recited any facts, but this poem gives a good insight about what it is to live with a child on the spectrum, and how heart-breaking it could be, and how the marriage is on the point of break-up, and things she said about the second child, and the constant stress, it is all true.
If you want to read more from the talented Melinda Smith, please visit her blog.

A boy on a Teeter Gym Ball

I'm bouncing in the air,
I'm Tigger, not a boy!
Mum grumbles, I don't care,
For me it's a pure joy!

I'm jumping in the air,
Wanna join me, little brother?
I'm perfectly aware,
You will be stopped by mother.

I'm leaping in the air,
My world's a somersault,
And I don't know where
And how I will halt.



Sasha is always bouncing, if anything, he is a human Tigger. He has so much energy and he is always on the move. When the occupational therapist first brought a bouncing ball for Sasha to try, he immediately got on it, and since then this ball has become a familiar feature in our house. We had to return the ball to the therapist and the one we use now is bought from amazon.
A Teeter Gym Ball is 65cm in diameter and comes with a pump (the pump was a devil to use, we had to use a bicycle pump instead)
Sasha has a very good balance, as mentioned many times by his horse-riding teacher.
He is very graceful, and whenever he is bouncing on his favourite ball, he reminds me of Picasso's painting "Girl on a ball".

Everyone needs a Cuski (yet another sleepless night's creation)

Being a baby
No easy task.
One of life's comforts
Is my snuggly Cuski.
"Don't go away, Mum,
You don't need the loo"
"I'll be back in a minute!" -
And she leaves the room.
I'm feeling abandoned,
Thanks for asking.
My chin is quivering,
I'm chewing my Cuski.
My soothing comforter
I twisted and twirled.
With my soft Cuski
I'll brave the world.
Someone call Social Services,
She's been gone forever.
Don't let her use the loo.
Never-ever.
She's back, my mother,
And she thinks she's funny
"Whatta brave little boy,
A courageous bunny".
For you it's three minutes,
For me an eternity,
Cuski and I -
Function as a fraternity.



Eddie has a selection of comforters, and he chomps on them with enthusiasm.
I think a comforter like Cuski is a great invention, it is soft, soothing and ever so comforting. Sometimes when I am feeling blue, I feel I need a Cuski too.

Ode to a rocking chair

You embraced us both in your rocking rhythm,
You supported my aching back,
You heard me crying - and sympathised,
And lulled my baby to sleep.

My baby was fretful and cried in pain,
Waves of misery crashed through the night.
You saw my despair - and held us tight,
And rocked my baby to sleep.

You witnessed his first confident smile,
His gurgles and cheeky grins,
You saw my delight - and quietly sang,
And danced my baby to sleep.

Every time I sit in my nursing chair with Eddie in my arms, I feel like this has been the best purchase ever. It truly saved my sanity and my aching back for many nights of feeding, with a baby wailing because of colics. We rocked and we rocked and we rocked.