First…Then…

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