(c) Melinda Smith 2011

First…Then…

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

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  1. Mel….First thought it wad great poem
    then thought it was amazing heartfelt story told in the most simplest way possible

    First i commend your bravery in attempting to write something like this
    Then i salute you for seeing it through determination

    Can i have your permission to reprint this in my book?

    Love
    Erosha

    • Hi Erosha! Glad you liked it. Props for keeping with the First…Then… theme in yr comments 🙂 Re reprinting in your book, I will send you an email.

  2. I thought this was great! I could definitely relate! I was just telling my husband the other night that I feel guilty for not doing the max amount of therapy possible, but with 2 kids with special needs (heck, even if I only had my son on the spectrum!) I think I’ll lose my mind if I do nothing but therapy all day long. And your line about the Holland poem made me laugh out loud 🙂

    If it brings you any hope though, my husband is on the spectrum and he LOVES his job! Yes, some aspects of it are stressful, but I think anyone who works – autism or not – would say that about their job. So while some people might describe job stress like a combat zone, everyone with autism is different!

  3. Thank you for sticking it out with this poem, Melinda. I know how hard it is to bring the words and experiences out of your heart, but there’s always that person somewhere (hopefully more than one!) who will find encouragement in knowing they’re not alone. Every path is different, but I found much in your poem that I could relate to! Thanks for sharing!!!

    Debbie K.

  4. This is a fantastic, powerful poem. One of my friends in Canberra (a fellow “ASD Mum”) shared it with me, and I found myself nodding my head with nearly every line. Thank you for having the courage to write it!

    Kristen

  5. Melinda – fantastic job. I always love your poems and I admire you immensely for writing what so many of us are feeling out there. I will be sharing this link on facebook as it really does express so many of my experiences and emotions of the past few years. Thanks!! See you soon I hope!

  6. Thank you for expressing so succinctly what many of us ‘poetically challenged’ mums can not. It was like reading a timeline of our life thus far. One thing is for sure, life with a child or children (or partners for that matter) on the spectrum is never easy but always rewarding. I am just glad that we have each other to rely on in those dark times when you despair that anything will ever change for the better.

  7. Thank you Melinda for writing this and sharing it. It is indeed a piece that is written by someone living this reality. Parts of it are really so simplistic but sometimes these simplistic words are the hardest to put in writing – why? Possibly, it is the raw emotion behind it. I saw you sharing it in a FB forum and I hope you don’t mind I have now shared this link on my FB page. Thank you for what many are thinking, feeling and living but have not had the courage and/or talent to share with others.

    Debbie

  8. Please everyone share the link to this poem as widely as you want, it was written for all of us to read. So glad this piece means somrthing to so many people. x.

  9. Gorgeous, raw, and honest. Perfect in every way.

  10. overwhel,ingly honest – thanks for sharing 🙂

  11. Beautiful…..no other words….just beautiful 🙂

  12. Melinda,

    This is a powerful poem and so much I can relate to. ‘First, then’ is one of the strategies I used with my son (now 13, diagnosed with autism at 3yrs 1 week, a day I will never forget).
    I too felt guilt on an almost daily basis and grew tired of trying to explain it to family and friends and those strangers rude enough to stare and whisper when my son was having a meltdown in public. I admire your courage in pushing on with the poem and have no doubt it was difficult to write…keep doing it.

    Best,
    Lisa

  13. Your poem really spoke to me. There is light at the end of the rough tunnel.

  14. […] 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 […]

  15. Hi Melinda , what a beautiful, poignant poem andso true. Love it wendy xxx (savette Gazette)

  16. […] title was originally going to be CircleQuirk but I have changed it to First…Then… after the most popular poem in the […]

  17. I have never read something that is so true to how I feel, thank you, I will remember this in my darkest times.

  18. […] poems in this book have been used to spread awareness of autism spectrum disorder (ASD), including the title poem, Autistic Acrostic, Brain weather, and more recently I prefer, which will soon appear in the […]

  19. Oh wow, what a powerful poem – you’ve said everything that could be said. Lovely words. Well done, and keep on spreading your words of love and help for yourself and for others. This poem should be handed to every parent on the diagnosis/giving of their child’s label.

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