(c) Melinda Smith 2011

Posts Tagged ‘Melinda Smith poem’

I am autistic

In Autism Poem on December 23, 2011 at 5:19 pm

A while ago I posted a poem called I have autism that was a ‘google-sculpture’. I said it was half of a pair. Here is the second half, also a google-sculpture – that is, the words in the poem are edited and rearranged results from a Google search on the phrase ‘I am autistic’.  Reading the two poems together I hope gives a window into the online autism community, as well as illuminating some of the debate about ‘person-first’ language in an autism context (does one say ‘autistic person’ or ‘person with autism’ ? Depends on who you ask…)

I am autistic…
 
because I cannot be separated from how my brain works
 
, I’m not a brat
 
: ask me about my needs
 
, not just an adult with autism. It is a part of who I am. I was born this way. I would not choose to change that.
 
, I’m not crazy.
 
. I can speak. My voice is different, not weak, and if you listened…
 
. I’m an adult, with a career, a mortgage, and my first grey hairs. I’m female
 
. I don’t have autism.  That’s a thing I’ve been saying forfuckingever. And yet people keep insisting on pointedly saying that…
 
. I’m apparently what they call “high-functioning”, but I don’t like the term very much; the division feels artificial
 
, and I think in pictures. If the philosophers are correct, I…
 
, and that’s even better !
 
and proud of it, says Indonesian Oscar Yura Dompas, at the launch of his autobiography, Autistic Journey, at QB world Book Plaza
 
: what’s your excuse ?

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Social Stories for Neurotypical Adults #27 : No dogs allowed

In Autism Poem on December 16, 2011 at 4:55 pm

The poem below is in the form of a social story.  Most of those living with autism will be familiar with this behaviour modification tool, first developed by Dr Carol Gray.  Social stories are used with autistic (and other developmentally delayed) people to help them understand social situations and to illustrate appropriate and inappropriate behaviour.  They are written in a very particular (and proscribed) kind of idiom, with the sentence structure kept as simple as possible to minimise potential for confusion.  Reading a whole book of sample social stories can be hilarious: ‘When is the right time to talk about Thomas the Tank Engine’, anyone ?

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However I often find myself wishing that instead of ‘using’ social stories on my child, I could ‘modify’ the ‘behaviour’ of certain other members of the public so my child could have the right to a happy and safe experience of public space. The following poem comes out of that place…

 

 

 

 

 

Social Stories for Neurotypical Adults #27 :  No dogs allowed

I love my dog.
My dog’s name is Hackles.
I love to go walking with Hackles. It makes both of us very happy.
Hackles’ favourite thing is to run around without her leash on.
I love to see how happy she is when she does this.

There are some places where dogs are not allowed to go.
There are some other places where dogs are allowed, but only on a leash.
You can tell if you are in one of those places because there are big signs,
sometimes even with a picture of a dog with a red line through it !
I hate those signs. They make me mad !
I think it is unfair that Hackles can’t just go wherever she wants.
Sometimes I just ignore those nasty old signs.

Not everyone loves dogs.
Some people are scared of dogs.
Some children are so scared of dogs they have to scream and run away whenever they see a dog.

When someone acts afraid of Hackles, I get really upset.
Hackles is really sweet and wouldn’t hurt anyone.
Sometimes I want to take Hackles right up to the scared child and make them pat her,
just so they can see there is no reason to be afraid. 

If I take Hackles too close to a scared child it could be really dangerous.
The child might run away onto a busy road or into deep water.
Or they might scream so much that Hackles gets scared and angry and bites them.
Or they might get so upset they hurt themselves or other people, or me or Hackles.
I do not want this to happen.

I will try to remember that not everyone loves dogs as much as I do.
I will try to remember that the ‘no dogs allowed’ and ‘no dogs off leash’ areas are there for a reason.
The people and children who are scared of dogs need to have somewhere they can feel safe.

I will try to remember to do what the signs say.
Smart grown-ups obey signs.

On holding the baby of a friend

In Autism Poem on November 25, 2011 at 3:58 pm

Hi there all. So sorry for my recent radio silence. I have been doing a lot of parenting and not much poeting. Hoping to redress the balance, starting now.

I am getting close to finishing the book. Very exciting. Only two more poems to go (in addition to those already on the blog), both of them nearly finished.

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The poem below is now at the second draft stage. It is a sonnet, by the way (in case you were curious). Comments welcome.

On holding the baby of a friend

I hug and nuzzle; brush my cheek to his.
He giggles, grabs my nose and grins at me.
I close my eyes and pray no-one will see
the tear I shed at how much fun this is.
I’m sprung: ‘Clucky again? Another son?’
How can I tell her so she’ll understand ?
I had so much of this to give : I planned
to shower it all on mine.  He wanted none.

I wonder whether mothers get a store
of child-affection, swelling in the chest
like milk come in, demanding to be used.
Does having to suppress it make you sore?
MyWebMD has nothing to suggest.
I borrow babies. They reduce the bruise.

But

In Autism Poem on September 29, 2011 at 8:11 pm

This poem explores a sibling’s perspective on living with autism. I hope it shows how  love, admiration and acceptance are mixed up with the resentment and sadness that being a special needs sibling can bring. Comments welcome.

But

When I asked him about his favourite game DeathBattle 5000 I said ‘level’ instead of ’round’.
He kicked me in the shins.
Mum kicked us both off the computer.
After dinner he patted my nose and smiled.
Love my brother. Sometimes he gets angry, but.

I wanted us all to go to Mark’s house to play with his trains.
My brother lay on the floor and screamed ‘I HAAAATE MAAARRRK!!’ (Mark is his friend).
Mum said I would have to go with her another time.
Before bed, he read me a Captain Underpants story.
Love my brother. Sometimes he gets angry, but.

I wanted to have my party at Crazy Monkeys Play Centre.
Mum started writing the invitations. My brother read them and tried to tear them up.
He punched me in the tummy. ‘I’m NEVER going to Crazy Monkeys. EVER. AGAIN !!!’
(We were there last week. He went down the giant slide twenty four times.)
Mum said I can still have my party there. Dad will stay home and look after him.

At bath time my brother gave me a squashy hug. He said I was his favourite thing.
Love my brother. Sometimes he gets angry, but.

Not the Botany Bay Song

In Autism Poem on September 14, 2011 at 12:37 pm
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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.

First…Then…

In Autism Poem on September 1, 2011 at 10:39 pm
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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

The impossible blindfold

In Autism Poem on August 22, 2011 at 1:43 pm
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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.

A prehistory of autism

In Autism Poem on August 20, 2011 at 2:57 pm
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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.

Love song of autistic husband

In Autism Poem on August 18, 2011 at 1:45 pm
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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.

An autistic woman explains the terror of affection

In Autism Poem on August 16, 2011 at 1:37 pm
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The following poem is in the voice of a young autistic woman.

It is inspired by Donna Williams’ book Nobody Nowhere, in which she describes how feeling affection and closeness with another person was a terrifying experience for her, and made her fear that she would be ‘swallowed up’. She did, however, sometimes feel closeness with inanimate objects, and objects associated with certain loved people would become very special to her. It is an extremely powerful book – highly recommended.

The draft poem below is also in the form of a glosa (a poem that responds to another poem and uses some of the original poem’s lines as stanza endings in the new poem). The original poem is ‘Circle and Square’ by Edwin Muir, and the bit I’ve decided to start a conversation with (and use the lines from) is the final stanza, quoted at the start. The full poem can be found here.

Give, but have something to give.
No man can want you all.
Live and learn to live.
When all the barriers fall
you are nothing at all.    
        – Edwin Muir, ‘Circle and Square’. 

An autistic woman explains the terror of affection

A rushing of the sea:
your smile is drowning me –
I have to fight to live.
Why can’t you let me be ?
I feel in negative:
Distress is all you give.

Lost as I have been
I dare not let you in
however loud you call.
I cower in my skin
I curl into a ball.
No man must have me all.

You want to show you care?
You will not reach me there,
that is not where I live.
Just barely touch my hair
– that, I may forgive.
Live, and let me live.

Or give me for my own
a button or a stone –
something smooth and small  –
and when I am alone
I’ll feel you through this wall.
But when the barriers fall

I cannot meet your eye;
you stab me when you try
to look at me at all.
To let you is to die.
I’ll go under, I’ll fall –
I’ll be nothing at all.