Social Stories for Neurotypical Adults #27 : No dogs allowed

The poem below is in the form of a social story.  Most of those living with autism will be familiar with this behaviour modification tool, first developed by Dr Carol Gray.  Social stories are used with autistic (and other developmentally delayed) people to help them understand social situations and to illustrate appropriate and inappropriate behaviour.  They are written in a very particular (and proscribed) kind of idiom, with the sentence structure kept as simple as possible to minimise potential for confusion.  Reading a whole book of sample social stories can be hilarious: ‘When is the right time to talk about Thomas the Tank Engine’, anyone ?

Poetry appearing on this page was produced with the generous support of artsACT

However I often find myself wishing that instead of ‘using’ social stories on my child, I could ‘modify’ the ‘behaviour’ of certain other members of the public so my child could have the right to a happy and safe experience of public space. The following poem comes out of that place…

 

 

 

 

 

Social Stories for Neurotypical Adults #27 :  No dogs allowed

I love my dog.
My dog’s name is Hackles.
I love to go walking with Hackles. It makes both of us very happy.
Hackles’ favourite thing is to run around without her leash on.
I love to see how happy she is when she does this.

There are some places where dogs are not allowed to go.
There are some other places where dogs are allowed, but only on a leash.
You can tell if you are in one of those places because there are big signs,
sometimes even with a picture of a dog with a red line through it !
I hate those signs. They make me mad !
I think it is unfair that Hackles can’t just go wherever she wants.
Sometimes I just ignore those nasty old signs.

Not everyone loves dogs.
Some people are scared of dogs.
Some children are so scared of dogs they have to scream and run away whenever they see a dog.

When someone acts afraid of Hackles, I get really upset.
Hackles is really sweet and wouldn’t hurt anyone.
Sometimes I want to take Hackles right up to the scared child and make them pat her,
just so they can see there is no reason to be afraid. 

If I take Hackles too close to a scared child it could be really dangerous.
The child might run away onto a busy road or into deep water.
Or they might scream so much that Hackles gets scared and angry and bites them.
Or they might get so upset they hurt themselves or other people, or me or Hackles.
I do not want this to happen.

I will try to remember that not everyone loves dogs as much as I do.
I will try to remember that the ‘no dogs allowed’ and ‘no dogs off leash’ areas are there for a reason.
The people and children who are scared of dogs need to have somewhere they can feel safe.

I will try to remember to do what the signs say.
Smart grown-ups obey signs.

autism crumpets

Poetry appearing on this page was produced with the generous support of artsACT

I have been having fun with anagrams this week. Did you know there are 107,143 possible anagrams of the words ‘autism spectrum’ ? I picked a few of my favourites and made a poem for you. It does actually make a kind of alien sense if you read it through like you would a normal poem - as a story told from the outside, from the perspective of observers and carers.

By the way, pica (mentioned in the poem below) is a condition where a person has an appetite for things that aren’t food – e.g. soil, nails, paper, etc. Some ASD folks have pica in addition to their other challenges. Note it is different to oral sensory-seeking behaviour where the person sucks and chews things – with pica, they actually want to eat them.

PS : If you want some anagram fun of your own, go play with the internet anagram server.

 

autism crumpets

Static ‘me’ rumpus.
Imp tutu screams.
Mute. Strums. Pica.
Eat up! Mm! Tics-r-us.
Mute Mac purists.
Um…miscast erupt?

Up came mistrust
(rips Mum acutest).
Impact: muse rust.
Tacit ‘summer’s up’
captures its Mum.

Sure must impact,
must impact user.

Mum stirs teacup.

But

This poem explores a sibling’s perspective on living with autism. I hope it shows how  love, admiration and acceptance are mixed up with the resentment and sadness that being a special needs sibling can bring. Comments welcome.

But

When I asked him about his favourite game DeathBattle 5000 I said ‘level’ instead of ’round’.
He kicked me in the shins.
Mum kicked us both off the computer.
After dinner he patted my nose and smiled.
Love my brother. Sometimes he gets angry, but.

I wanted us all to go to Mark’s house to play with his trains.
My brother lay on the floor and screamed ‘I HAAAATE MAAARRRK!!’ (Mark is his friend).
Mum said I would have to go with her another time.
Before bed, he read me a Captain Underpants story.
Love my brother. Sometimes he gets angry, but.

I wanted to have my party at Crazy Monkeys Play Centre.
Mum started writing the invitations. My brother read them and tried to tear them up.
He punched me in the tummy. ‘I’m NEVER going to Crazy Monkeys. EVER. AGAIN !!!’
(We were there last week. He went down the giant slide twenty four times.)
Mum said I can still have my party there. Dad will stay home and look after him.

At bath time my brother gave me a squashy hug. He said I was his favourite thing.
Love my brother. Sometimes he gets angry, but.

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

Brain weather

Poetry appearing on this page was produced with the generous support of artsACT

This poem is in the voice of a parent / carer / friend of an autistic child, looking on helplessly while the child has a total meltdown.

In case you’re wondering, the extra spaces are intentional.

Brain Weather

:autistic meltdown ground zero

Think of                hemispheres:    Western, Left;
the wind-flows                 that connect them; the currents                       of sea; of electricity.

When was  it that             your frontal        lobe
Cauterized          itself against your       will
leaving  you endless       atomised local                   storms
with no way       to blow them    -selves out?

The last words you          said before the clouds came
stutter on            your small           tongue;
settle    in like cat-and    -dog rain, the syllables
hammering down, fixing one      thought with      a dozen stabs of lightning.

The miracle is not that it                stops, but how afterwards you can be so              calm and charming
- and puzzled that the rest of us still        drip and shiver from the rain.