For the benefit of my friends who rely on visuals; Here is the script of what I am saying. References to slides, where you can't see my lips are given in bold.
This is the title of a Youtube clip that does the rounds on social media. It’s a network news story about Carly Fleishman a young woman with a speech disability who begins to express herself distinctly using a computer. And it really pisses me off.
I realise it is inspirational, but it is the tagline that annoys me. Why say “Unimaginable Intelligence” ? why couldn't anyone imagine that Carly was always intelligent - technology just caught up.
Carly has autism
Most people understand autism as one of 2 extremes. One is the “savant” the Rainman who can count cards, memorise the calendar, and draw a map of an entire city after only seeing it once.
Popular culture and the media has lionised these people to the point where when someone, finds out your child is Autistic not Artistic
will ask “ What is their special talent?”
(it's not the Miss World Pageant)
And at the other end of the scale we have severe and “unreachable” autism - The ones who are Predominantly non-verbal, who may engage self harm or aggression and “inexplicable” “meltdowns”
like this (point to video of little girl at computer)
This looks like one of these "unreachable" autistics. She is distressed and screaming and obviously agitated...
- because someone switched the internet off!
Now, be honest ... Who here hasn't said a few choice words when the wifi fails?
This little girl didn't have words. And like Carly she was Judged by her ability to communicate “our way”
Well that little girl is my daughter Grace,
who along with her brother Liam has autism,
They are now teenagers and as charming, interesting and loveable as any mother could hope for..
Grace is the reason I created the Grace App
Grace app is a communication system for the iPad or iPhone which won a United Nations World Summit award a couple of years ago
It was created to support my daughter
But a speech disability can happen to anyone at any time. of the 2000 people in this theatre:
5 of you could have a stroke.
Another 7 might suffer a brain injury.
And in the general population, I in a 100 people HAS autism.
Any of these things could result in an inability to speak.
You might imagine that there would be services dedicated to providing communication support as a matter of urgency.
after all, society has evolved and legislated to make allowances for mobility impairment.
We build ramps, wider doorways and set aside parking spaces to make the world accessible.
If you had an accident and lost the use of your legs, no one would expect you to climb up the stairs in order to get to work.
Where are the "ramps” for communication support?
Imagine if you had autism and could ... not ... talk.
First you would have to wait for diagnosis then wait for services which in the case of autism can be several years and even then, there is an assumption that the most important thing is to encourage speech -
So you might have no way of communicating appropriately while you were waiting for all that.
Now THAT is unimaginable – can you even begin to imagine how frustrating that is?
I can: In the morning, I can’t function without decent coffee, so when I travel I need to go out of my hotel and find a well-known American coffee franchise.
I can just about manage to queue up and place my order - until the cashier wants me to call it one of those ridiculous made-up coffee names,
They want me to ask for it “their way” and I wanna jump across the counter and say:
JUST GIVE ME THE COFFEE
Well this is what we do when someone has a speech delay.
Carers and professionals alike will put off providing alternative means of communication in order to:
“let the words come”
Our hospitals and acute care services are not set up for this either.
If you are one of the dozen people in this room who had a stroke or a brain injury you could be waiting quite a while for speech therapy.
I was contacted by a lady in Germany whose non-verbal son was hospitalised and he had no way of expressing how much pain in he was in.
So I found a set of “smiley face” pain scale pictures, translated them into German and sent them to her, so she could put them on her iPhone.
The hospital did eventually provide a standard pain scale for the child.
THREE DAYS AFTER HE WAS ADMITTED, AND ON THE OTHER SIDE OF THE DOOR.
Schlimmst moblicher unertraglicher schmerz = ... The worst pain
So what am “I” going to do about that?
Research and experience have shown that the best way to influence a community is to reach people in their homes. As with so many things to do with education, better-prepared and informed caregivers are the key.
But kids don’t come with an instruction manual
and we don’t always realise that something is wrong or what to do about it
What I am trying to do is try and change how society identifies, accepts and understands people with communication disabilities
so that as and when become parents, or carers, we know where to look for help
Because when it happened to me, I was NOT prepared
I was a bit of a high achiever in my early life. I got 4 A Levels and I got into Melbourne University, which was a pretty big deal where I'm from.
When I got a job with a National Clothing company. I taught myself everything there was to know about selling and became the No 1 Salesperson in Australia for Spring Summer 1990
When I decided I wanted to sell wine, and I didn’t have the “essential” degree in wine marketing so I taught myself - I attended courses, volunteered at cellar door in the Hunter Valley and I excelled.
I was the Number 1 Boutique wines salesperson calling on the best restaurants in Sydney.
And then I became a Mum. I was the mother of the world’s most beautiful baby boy
But he wasn’t developing as he should. And there were no more awards or certificates. No one calls you up to receive a prize when your son is more interested in playing with buckles than learning to talk.
It was my husband who had to make me face the fact that we needed help for Liam. we have a family history of Autism - he recognised the signs, but when I did finally accept it - I felt lost.
Now Gary Glen, the sales motivational trainer I used to listen would say: If it is to be, It’s Up to Me.
so like the frocks and the wine, I realised that if I was going to be able to reach my son I had to learn how to do it myself.
I read books, I went on courses and I spoke to every professional I could get near. Liam had limited interests but one of them was animals so I took him to every zoo and open farm on the East coast of Australia to try and stimulate his language.
And it was there in the Ballarat Wildlife park that he said his first real word.
From then on I read him animal books, bought him animal toys and we re-enacted the annual Serengeti migration on the living room floor.
That zebra has had a run in with a crocodile, but he makes a full recovery.
It worked, he began to say words. He couldn’t say Mum, he couldn’t ask for a drink or a sandwich but he was connecting.
On one of these courses, I learned about PECs - where you use pictures to prompt functional language
It worked, Liam was able to remember and say the words when he used the cards and within 3 months he didn’t need them any more. He was talking.
By then we knew that Grace was also autistic and like Liam she wasn't talking.
Now what I lack in patience, I make up for in tenacity and just as well. Because while Grace took well to picture communication, she was not making any sounds.
having the pictures reduced her frustration so I stuck with it as her vocabulary grew - FOR 5 years
HOLD UP BOOK
as you can imagine , this can get pretty awkward to carry around.
So if we wanted to go out somewhere, I used to try and bring a smaller book - with less pictures.
One day we went to a toy shop so Gracie could choose a new DVD.
She couldn't find it on the shelf, and she didn't have the right picture to ask for it, she got really upset, lay down on the floor and screamed.
As I hoisted her on to my shoulder to carry her out of there - I remember thinking, "There has to be a better way"
I saw an Ad for the iPhone on the side of the bus and blagged one for free, from the CEO of Telefonica,
I Taught Gracie how to use it and then I facebook stalked a young hacker and iPhone developer called Steve Troughton Smith
and talked him into helping me create an App that could help Grace and other people like her.
The real beauty of the App has been that it gave Gracie, who it was named after, power to get what she wants
She doesn’t have to rely on me to find the right pictures, and remember to bring them wherever we go..
so this is what the app looks like
its broken into folders, like those big pages so the user can find what they want easily
and ask for it, using their pictures and words and its this section that matters the most.
this is where Gracie can save the pictures of all the things that matter the most in her world, so I know exactly what she likes
And the app can be adapted to suit Anyone of any age
while you might be into Formula 1
I like pretty shoes and handbags, and we each have the ability to say what we want.
The device never has to get any bigger and whether you have a smart phone or a tablet the vocabulary is infinite
One day I found Grace taking a photo of a toy on ebay. A toy that I had given away to charity 4 years before
She could have just brought me to the computer and pointed to it, but she knew that if she took the photo and asked for it with the App - that I would know, that she wanted it back.
Bidding was tight because it was now a collectible and it cost me 40 bucks to get it back - but it was worth it to see that she could finally say what she wanted her way, without relying on me,
While she has to come and engage with us, it doesn’t replace her voice. So Gracie can communicate with pictures if she wants to, or she can try to use her voice
But we can always understand her, however she chooses to communicate.
I can take a step into her world by following what she likes and she in turn trusts me enough to want to be a part of mine
In 2011 I travelled to Australia for my Grampa’s 90th birthday. Gracie stayed home with her Daddy. One night I phoned home to talk to my husband and Grace was getting ready for bed so he held up the phone for me to say Goodnight.
And across the 17,000 miles I heard: I WANT MUMMY - I waited 11 years for that.
My other reward, and the reason I am here tonight is that by showing me how SHE wanted to communicate, Grace has given me a voice,
It’s my chance to try influence society that everyone, regardless of ability or “imaginable” intelligence, deserves to be heard.