First… Then… (the book of autism poems that started out on this blog) has been reviewed by the lovely Galina Varese at her blog, Chez Maximka.
I have never met Galina in person, but if I had the chance I would like to give her a hug and thank her for her close reading and generous comments. I wrote the book for people like her and her son, and I am so glad that she has been able to connect with the poems.
It’s official : Social Stories for Neurotypical Adults #27: No Dogs Allowed has now overtaken First… Then… as the most viewed poem on this blog. I don’t know who is out there Facebooking, Tweeting or linking to it, but it has been a steady performer for many months now, and has now cracked over 2000 views. Thank you, whoever you are.
(2000 doesn’t sound that impressive, I know, but believe me, for a poetry blog, that’s a big number. Most of First… Then…’s almost 2000 views were achieved in one day, when it went totally viral in the autism community on Facebook (just over a year ago). Again, pretty unprecedented for a poetry blog. Most poetry *books* these days sell in the hundreds, unless written by Billy Collins, Wendy Cope or Les Murray. I love the internet.)
If you’re new to this blog, this is the part where I explain that both of the above poems are now in a book, also called First… Then…, which you can browse here and buy here. If you’d rather not pay shipping, why not wander into your local bookshop / bookstore and ask them to order you a copy from Ginninderra Press ?
Thanks for visiting. I am working on setting up some more readings from the book so watch this space for details (‘tour dates’). In the meantime, Keep Calm and Watch the Paralympics. And have a pleasant day.
The following review of First… Then…, the book of this blog, appeared in The Canberra Times, Saturday August 25, 2012. It was written by Peter Pierce, editor of the Cambridge History of Australian Literature.
‘Another planet, other places’
The title and opening poem of Melinda Smith’s First…Then…, a collection of “poems from planet autism” is choppy, unnerved, but essential to what follows. It recounts her deepening realisation of the changes that will be wrought in her life now that she is the parent of an autistic son. The foreword has already revealed that ‘all the poems in this book are about life with autism’; has also dealt with how Smith has presumed to write not only of her only experiences as a mother, but ‘in the voice of a person with autism when I am not myself autistic.’ In ‘Brain Weather’, she writes of how she has to try to understand a brain whose frontal lobe was cauterised, leaving you ‘endless atomised local storms’. The child is given a voice in the striking poem ‘I prefer’, which lists some of those disquieting preferences : “serious illness to surprises/computers to my brother/reading number plates to Christmas morning”. In the brief compass of this book there is much else that is imaginatively and formally challenging. Consider some of her titles: ‘Love song of autistic husband’ (one of the most plaintive of these poems), ‘A prehistory of autism’, the brilliant and almost persuasive ‘All magpies are autistic’, and ‘Not the Botany Bay song’, which is tellingly subtitled ‘A sea shanty for ASD parents and carers’. There is no lyrical impulse at work in these poems. They are terse, concentrated, questing without false hope.”
I am actually pretty happy with that. Why not browse this blog – or buy the book – and make up your own mind 
I got some good news yesterday. Two of the poems in First… Then… (the book of this blog) are going to be in the second Perspectives Anthology, a collection of poems inspired by autism and other disabilities. The Editors of the anthology (James P. Wagner and Marc Rosen) will be taking the book on the road soon, mostly in the Long Island area of New York. Alas, I live too many continents away to be able to come on the tour, but keep a look out for details if you are in that area. I will post more information here when I know it.
Just in case you are interested, the poems of mine selected for Perspectives II are Brain Weather and I Prefer. Sneak previews on the other end of those links
To buy your copy from Ginninderra Press , scroll aaaaallll the way down to Melinda Smith, find my third book ‘First… Then…’ and click BUY NOW.
About the book
First…Then… is a short collection of 24 poems about autism, written by the mother of a son with ASD. The poems explore many different voices from planet autism – from verbal and non-verbal autistic children, to autistic men and women, to parents, carers and siblings. Some are moving, some are harrowing, and some are laugh-out-loud funny. Together they provide a unique window into a much misunderstood facet of the human experience.
The writing of the poems in First…Then… was supported by an ArtsACT new projects grant during 2011. During that time the poems were drafted, redrafted, posted on this blog, and Tweeted and Facebooked to within an inch of their lives. Some of them were also published in other places (Tony Attwood’s website, Scottish Autism’s blog, Aspie in the Family, Quadrant Magazine, Blackmail Press, Geek Mook and ACT Carers’ Circle, to name a few – thanks to everyone involved for their support).
Now the poems are between two covers and ready to make their way out into the real world. Maybe they’re coming to your house ? I hope so.
PS: You can take a sneak peek inside the book by browsing around this blog. Start here. Enjoy.
PPS If you’re reading this before 12 April 2012 and you feel like coming to a launch or a reading, you’re invited ! Details here.
Poetry appearing on this page was produced with the generous support of artsACT
A bit of fun this week. I feel like we need it after the heavy going of First…Then… . This one is almost like the other side of that coin.
The thing that got me started writing this little ditty is the thought that, in my humble opinion, having a child with autism is not so much like a trip to Holland, as like being hauled against your will to an inhospitable wilderness with a bunch of strangers, dumped there and left to survive on short rations and daily floggings. You make friends with your fellow prisoners, you adapt, and after a few years you can even see how to make a life for yourself in this strange new land – but you can never go home again…
Despite how depressing the previous paragraph may sound, the following is meant to make you laugh, as well as say a few things ASD parents and carers are not ‘allowed’ to say. Try singing it to the tune of ‘For we’re bound for Botany Bay’ (an old Australian popular song about the convict days, for those of you from other countries).
Enjoy, and comments welcome.
Not the Botany Bay song
: A Sea Shanty for ASD Parents and Carers
Ohhh….
Farewell to the high life forever
Farewell to my suits and my heels
For my child’s on the autism spectrum:
my career juggernaut’s lost its wheels.
Singing echo-lay, echo-lay, la-li-a
Singing meltdowns as public disgrace
Singing though we might live in Australia
It can seem we’ve been shot into space.
Well our home is all plastered with visuals
and we never have guests as a rule
and the unstructured horror of holidays
means we can’t wait to get back to school.
Singing maybe this thing is contagious
Singing I used to think I was fine
But now all of my best friends are therapists
- or they’re parents of children like mine.
Then there’s friendships and hygiene and puberty
and employment and learning to lie.
It’s a long row to hoe, that’s for certain sure
- and then who’ll step in when you die?
Singing once I was witty and erudite
Singing once I had beauty to spare
Now I bang on about intervention plans
and I think I’ve got lice in my hair.
Poetry appearing on this page was produced with the generous support of artsACT
This is one of the hardest poems I have ever had to write. I say ‘had to’ because I have tried several times to abandon it but it has kept on coming back to haunt me.
The poem is for parents. It is a pretty frank account of living through the first few years of life with a child with neurodevelopmental problems, including diagnosis and starting therapy. If you yourself have lived through this you may need a kleenex or two handy (although the poem ends on a positive note, it doesn’t pull punches about how dark things can get). If you have people in your family or circle of friends who still don’t get why you’ve been acting so weird since your child with difficulties was born, make them read this.
Please feel free to comment below. I should also acknowledge that this poem was written with the support of artsACT.
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 would disintegrate before our kids ever got to that age
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 beads on string
Then letterbox-counting walk
First stay at special needs soccer for ten minutes
Then computer time
First nearly destroying my marriage
Then clinging 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
Poetry appearing on this page was produced with the generous support of artsACT
This poem is in the voice of an adult with ASD, and explores his / her ambivalent feelings about working with a bunch of neurotypicals.
It was inspired by the writings of Edgar Schneider (Discovering my Autism) and Temple Grandin (Thinking in Pictures).
The quote from the Bible used at the beginning is one that Schneider returns to again and again in his book. If you look carefully, you’ll see I have hidden one word from the quote in each line of the poem.
For my thoughts are not your thoughts, nor are my ways your ways – Isaiah 55:8
The impossible blindfold
: an autistic adult prepares for a day in the workplace
Today again I’ll strap on my mask for you;
zip up my ludicrous human suit;
force most of my thoughts into small closed boxes
so that when I speak, you are not made uncomfortable.
When I am not trapped in a room full of chattering
sometimes I can pass for one of your kind.
You few who reach for me with well-meaning thoughts:
even you have no clue how hard this is, nor can you.
If you are sighted and want to try blindness,
bind your eyes for a day, a week – you might come close.
But there are no easy ways to shut down your radar,
lock yourself in my clumsy robot cage
and be. For my thoughts are not your thoughts, nor are my ways your ways.
Poetry appearing on this page was produced with the generous support of artsACT
This poem is in the voice of a tribal elder from long ago, describing some of the special members of the tribe who display ASD-like behaviours.
As the mother of a child with ASD I have often wondered how my son would be perceived if we were living in a different place and time – one without a mass education system, where the main societal unit was a small community or tribe. Of course no one can ever know the answer to that question, but my hunch is that his ‘deficits’ would not be as much of a problem, and would be tolerated better because his ’gifts’ would be thought of as supremely useful. What follows is a poetic response to that thought experiment.
UPDATE: Since writing this poem I have come across an article published in May 2011 in the Journal of Evolutionary NeuroPsychology by Dr Jared Reser, hypothesising pretty much the same thing. Here is a summary of the article and here is the article itself. When this poem first appeared on my other blog, Dr Reser was kind enough to comment on it (in a good way). Great minds think alike…
A prehistory of autism
This one can run and run, never tiring;
climb trees and cliffs until the gibbons are afraid for him.
Even when he falls he feels no pain. He has little need of sleep.
He speaks only by repeating what he hears
but he is the best of nightwatchmen
and in the hunt he is magnificent.
That one scents the lions on the wind;
smells the poison in the berries.
If her special stone is taken away
she makes wounded beast howls
but she can spot a snake’s hole at forty paces
from three newly bent twigs and a fresh hollow in the dust.
This other knows the places of the stars by heart.
He speaks often of the wandering ones:
he can see their journeys as clear as the track to the waterhole
although he will not look any man in the eye.
He sits alone all day, dotting sky pictures on pieces of bark.
Only he knows the day when the wildebeest will move.
That one over there has no love but for making spears.
He chips stone after stone until the sun is low;
walks far to find strong wood for the shafts.
He does not join the hunt: he is slow and clumsy
and does not do what he is told – but in the hands of others
his weapons fly true and bring down many of the running herd.
Another has the gift of singing -
all melodies are hers at one hearing.
She has mastered the speech of those over the mountain
and of the fishers by the lake.
She will not let men come to her, although she is grown.
She screams and spits at any who try. Her kind smiles are only for small children
and for those who bring her new songs.
Poetry appearing on this page was produced with the generous support of artsACT
This poem is in the voice of a high functioning autistic husband talking to his neurotypical wife. It is not meant to be a portrait of a particular relationship, but it owes a lot to Edgar Schneider’s book Discovering My Autism and a little to the film Snow Cake.
The verse from Isaiah quoted at the start (from the Bible, for those readers not familiar with it) is one Edgar Schneider discusses a lot in his book. The poem’s slightly awkward, repetitive rhythm is based on the cadence of ‘for my thoughts are not your thoughts’.
For my thoughts are not your thoughts, nor are your ways my ways
- Isaiah 55:8
Love song of autistic husband
It is pleasant to see you;
when I’m near you I’m happy -
and if ever you leave me
I will think it a pity -
but my love is not your love.
You assume that your feelings
are a halo around you
I could see if I tried to;
that your heart is a mystery
I could solve if I wanted -
but to me it’s an organ
and the secrets inside it
are just muscles contracting.
I am always a stranger
understanding you sideways
but I’ll always be loyal;
I can’t help but be truthful
I remember the housework
and I’m there for the children -
surely these are important ?
You insist I’m withholding
all my tenderness from you
but it’s not like a river
that I’ve slyly diverted:
it is more like an absence
like a cave or a sinkhole.
When we fight (so you tell me)
you are harrowed with terror
but my anger is over
when my voice has stopped shouting -
it is you seems to carry
little scars for a lifetime.
When I think of the future
I consider you dying:
what will stretch me to breaking
won’t be grief at your going
but the alien business
of the funeral, the lawyers.
My routine will be scrambled
I’ll be sick to my stomach
I will shout at the children
I will leave the wake early
and when later I’m solo
I will balk at your absence
I’ll be frightened and angry
– but I don’t think I’ll cry.
