The following poem is by the mother of a seven-year-old girl who suffers
with an Autism spectrum disorder. It is breathtaking, heartbreaking and
most of all, full of a love so huge it rolls off the words in sobs.
“I stand quietly while you do
somersaults on the bed as you aren’t being naughty, you are just trying to get
your out of sync body under control.
I stand quietly by the toilet
door every time you need to go, and come with you around the house, and
sometimes even just across the room, because I know you can feel truly
frightened when you are not near me.
I stand quietly at the
supermarket checkout while everyone stares at you barking like a dog and
blowing raspberries on my arms to cope with the buzzing lights.
I stand quietly while you tell
the baffled shop owner that you are looking for shoes that feel hard like
splintered wood because your skin can’t bear soft things.
I stand quietly when the
attendant gives us scornful looks when I ask for the key to the disabled toilet
because the hand dryer noise is too overwhelming for you.
I stand quietly while the nice
old lady who lives over the street tells me you wouldn’t be like this if you
had siblings.
I stand quietly watching the
part-cooked dinner flush down the toilet as the smell was becoming too strong
for you to bear.
I stand quietly as you
diligently brush your teeth even though it feels like the toothpaste is burning
you.
I sit quietly while you scream
at me, trying to control the panic you feel because I gently touched your head
when brushing your hair.
I sit quietly while the teacher
tells me she knows about autism and that you are not autistic and asks if I
would benefit from some parenting classes.
I sit quietly while the GP, the
occupational therapist and the paediatrician agree how bad it is but say that
there are no resources to support us further.
I sit quietly while you cry
because your friends say you can’t play with them any more because you tried to
change the rules once too often, even though it was only so you could cope.
I sit quietly watching you
desperately try on countless items of clothing, searching your cupboards,
feeling the textures, knowing that we will have to cancel your beloved horse
riding lesson again because they all feel too bad to wear.
I sit quietly as you explain to
me that you can go to no more birthday parties and no more clubs as people are
just too scary when they are excited.
I sit quietly when my family
tell me that you will grow out of it, you just need more routine and earlier
bed times.
I sit quietly and rack my brains
for something for you to eat as everything you try today makes you gag and
wretch until your eyes stream with tears.
I sit quietly when an old friend
suggests I would be better off putting you on the naughty step and taking away
a beloved toy.
I sit quietly all night whilst
you sleep on the cold wooden floor with your head on my leg as you are really
poorly but the warm softness of the bed that should be a comfort is making you
feel worse.
I sit quietly while you try to
regain some kind of control over your body in a meltdown, scared and sobbing
and writhing about, hitting yourself harder and harder and begging me to hit
you as hard as I can too.
I lay quietly with my back to
you as my smell makes you feel sick and although we both desperately want and
need to cuddle, you can’t bear to.
I lay quietly beside you when
you tell me that you are the wrong sort of special and the wrong sort of
different and you want to die.”
