A Parents view of autism
A companion story to ‘A book about what autism can be like’
By Sue Adams
This is Chris.
Chris is 12 years old.
Chris has dark hair and brown eyes.
Chris has autism.
I am Chris’s mum.
This is our family’s story.
Chris has always been smiling, even when he was very little.
He used to smile at me.
Now he smiles over my shoulder, looking past me into space.
It is hard work for Chris to smile at my face.
No-one needs knows if Chris was born with autism or if it ‘just happened’.
Problems with talking were the first thing to be noticed.
“Chris should be talking by now”, said Nan.
A visit to a speech therapist gave the same answer.
So Chris and I worked on talking more.
As an older brother was diagnosed with learning problems, I thought maybe that is what Chris has too.
This is when I was told “Chris has autism”.
I was amazed.
At first I wanted to know more.
I borrowed every library book I could find.
I spent hours on the Internet.
Now I was an instant expert!
We tried special diets – they helped a bit.
We tried exercise – it helped a bit.
We did classes and reading and computers and games and more… everything helped… just a bit.
I learned that nothing was going to be the magic answer.
Lots of things can help, but just a bit.
This is when I started to cry.
I grieved that everything I expected for Chris was now on hold, that he was living in a different reality from me, a world I could sometimes be invited to visit but not to stay.
I cried for all the things that I had expected, that were ‘normal’, that were my RIGHT as a parent!
And so my tears turned to anger.
I wanted to know whose fault it was so I could yell and scream.
But, you can only cry or scream for so long.
Tears dry up of their own accord.
Screams lose their power as your throat goes hoarse.
And you realize that life goes on.
Even though your child has this label, he still needs to eat, play, sleep and learn.
So, I have done my three steps: denial, grief and anger.
Now we are moving on.
We chose for Chris to start pre-school a year late so he would cope better, and he still repeated pre-school.
In the middle of grade two, Chris’s teacher was very concerned when she had to tell us Chris may need to repeat the year level. But we agreed and, together, planned how to make it the best for Chris.
In the middle of grade three, the gap was getting bigger. The educational difference between Chris and his friends was becoming a yawning chasm.
I loved the school Chris was attending with his two brothers, but there is a limit to the resources one child can hold when the rest of the class is waiting too.
So I looked wider. A special education setting was the logical step, so I chatted, phoned and visited.
When I decided on a new school I cried again. Not because of the school, as it is fantastic, but for another small dream lost and lamented.
When Chris’s Dad and I talked about changing schools, it was his turn to cry. We were grieving again.
But the process is faster the second time around.
This time we had a light shining in the dark tunnel.
Our mainstream staff was, and still is, always helpful, eager and enthusiastic. But for Chris, in a class with 25 other students, the mountain was just getting too hard to climb.
Now Chris is in a class of 12 with two full time adults – one teacher and one teacher’s aide. Chris has skipped up two grade levels to be closer to his own age group of playmates and is working to reach his own personal best. He is encouraged to stretch as far as he can, to enquire, research and theorize, to build, explore and test.
In mainstream school, Chris would still be trying to bridge the chasm, as his friends moved further ahead and out of sight.
Now Chris can play in the sand pit, take toys to school in his pocket and laugh at burp jokes that most 12 year olds have grown out of.
At home, we have timetables on the fridge to remind us about chores, homework and jobs at bedtime. We give points for good work and barter them back for treats like stories and long bath times.
For holidays, we go camping in the bush because it is quiet.
In the middle of Australia, the sky is truly dark and the stars sparkle like diamonds. We watch the campfire and drink hot milk, telling silly stories and burp jokes until it is time for bed.
Then, in the dark, I make up stories and grand adventures for three tired boys. Stories with happy endings.
Life is not simpler now but it is happier.
We have more ups than downs, more smiles than frowns.
I still tell people that “I have earned my nervous breakdown and no-one is going to deprive me of it”. I have even printed it on a t-shirt to make the point.
But recognizing and naming the problem was a big step forward for us.
Autism is still an issue for Chris and also for his younger brother but it is no longer a problem.
It is something that we are learning to work around.
We enjoy the hugs, smiles and wicked sense of humour (burp jokes are still big).
We weather the frustration, anger and sadness.
Autism has not stopped us being a family – we are just different, that’s all.
And different can be special.
Sue Adams © 2009
Post script – 2014…
Chris is in his final year at School.
The hurdles are still there but they are different now.
Chris still can’t read – it just doesn’t seem to work for him.
But his world has opened up with an e-book reader that talks.
He could not do the VCAL program as he can’t read…
But he is one of the leaders of the alternative program that the school runs.
He wants to work with wombats & that looks like it could be a possibility.
Chris has also started to show an amazing talent for ceramics – maybe his way of looking at the world could be a vision other people would like to share.