First... Then (an amazing poem by Melinda Smith)

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 wouldn’t survive long enough for our kids to get that old
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 the beads on the string
Then letterbox-counting walk

First stay at special needs soccer for ten minutes
Then computer time

First nearly destroying my marriage
Then clinging desperately 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

© Melinda Smith 2011

Written with the financial support of artsACT

I wish I wrote this beautiful poem. Not everything in this poem applies to us. Sasha was not different from other babies when he was little, it is only around 18-24 months that we started to notice he is regressing. And he never recited any facts, but this poem gives a good insight about what it is to live with a child on the spectrum, and how heart-breaking it could be, and how the marriage is on the point of break-up, and things she said about the second child, and the constant stress, it is all true.
If you want to read more from the talented Melinda Smith, please visit her blog.