(c) Melinda Smith 2011

Archive for September, 2011|Monthly archive page

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
artsACT Logo

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.

First…Then…

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

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