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
