There was no single thunderbolt moment when I understood my son, Liam, was not like other children. No “I knew where I was when John Lennon was shot, or Man landed on the Moon.” Instead it came over a number of weeks in one difficult summer, when little things started to add up and my husband managed to convince me that it was time to look for help.
Liam was a bright, happy and alert little boy and everyone loved him. He was obviously clever; leaning out of his stroller at 18 months to look at road signs. But sometime between his second and third birthdays, my husband started asking questions. Liam wasn’t talking, he wasn’t looking at anyone, he wasn’t answering to his name — he was leading us to the cupboard to get a drink, but not asking for it.
I resisted at first. Liam was perfect in my eyes, and he would catch up on his own. But eventually, my husband convinced me to bring Liam to our public health nurse and we got a referral to a Paediatrician who we started seeing regularly every few months.
After six months we demanded our diagnosis of autism, because the old Doctor we were seeing felt that that there was still a question mark, that we should give it “more time.” However, we knew by then that we needed to get on to waiting lists, and the diagnosis allowed us to get him into the Autism Intervention Course at the Autistic Association of Queensland in North Brisbane where we lived at the time.
Doubt and Denial still reigned. Even after Liam started at the centre, I was still hoping that maybe he had Asperger’s or something else. The sign over the door said ‘State Autism school,’ but one day I asked Liam’s teacher, “Is there any doubt?’ And she said, ‘No, there’s no doubt. He is very autistic.’”
The next few years passed in a blur, as we tried to secure services and struggled to cope with Liam’s increasingly difficult behaviour, and my attention was divided between Liam and his little sister Grace, who was born 20 months after her brother.
Gracie was breech, and delivered by a planned c-section at 38 weeks — “before she was ready,” in my opinion. The midwives had tried to turn her but she was tucked up so tightly under my ribcage, there was no chance of a natural delivery. A sign of the tenacious personality that was to come!
The day she was born she was put onto my chest, and she stayed there for the next two years. She wouldn’t sleep on her own, wouldn’t stop feeding, and I thought it was because she’d been forced into the world “too soon.” To me, Grace was fine. But my mother said, “Look at her, Lisa. She’s not interacting. She’s not looking at anyone. She won’t wean.”
And I suppose I just knew.
So off we went to the Paediatrician again, but this time it was water off a duck’s back — I knew why we were there and what was coming.
There was a wooden stacking toy with colored discs that you put on to each peg in the waiting room. I moved a red disc to a peg where there were blue ones and Grace went ballistic. And in the doctor’s office Liam helpfully rearranged a set of antique surgical instruments — it didn’t take much for Dr. B to write the letter of referral this time.
Shortly after this, we moved to Ireland. I started Liam on Picture Exchange Communication under the instruction of the Senior teacher in his State Autism Unit. The Picture Exchange Communication System, or PECS as it is known, works by allowing the user to make sentences out of a sequence of pictures, then present them to a Carer, Teacher or Peer. It ensures that the User approaches and practices their speech while enabling them to get exactly what they need with the pictures — lots of pictures!
Liam was just 4 1/2 when we introduced PECS at the start of the Summer 2002, but I don’t think we’d got past two pages of cards with him when we were out one day and he said “I want Toilet” independently — a good day!
For Grace, however, the process of learning to communicate was much slower. I had to do it all myself, as there was no provision for speech therapy for Grace in the State Autism Preschool that she had started in that Autumn.
I approached PECS very methodically, did the two-day course, followed the manual, bought the CD, made several different sized books for staying in and going out.
I took my data and learned everything there was to learn about it. And kept it going, for the next six years.
Grace was extremely good at communicating her needs with PECS but she relied on me to add to her vocabulary with new cards. As a Mum with two autistic kids, there was often a delay in taking, saving, printing, and laminating those new pictures.
As a result Grace was amazingly skilled at getting what she wanted using shapes, colors and numbers. She could put together a picture sentence that said “ I want eigth black triangle toast” meaning she wanted Vegemite Spread on toast cut into eight triangles. But she still couldn’t say “I want Toast”
When Gracie was just six, we were doing an ABA Program with a home tutor self-funded with bank loans (we told the bank manager it was for “Home Improvements” and it was, sort of). Gracie had started to make animal sounds while playing with a pop up book and one day when the Tutor said “What’s That?” Gracie got out her cards, made the “Its A” sentence, and said quite clearly, “Lion” — I will never forget it.
It was still difficult for most people to understand her approximations, she would say “Dink” for drink or “Tote” for toast. But it was enough to encourage me to continue to try and develop her vocalisations, while maintaining her picture communications as a prompt. Gracie is really smart. If she could tell that someone couldn’t understand her, she would go back to her book and make the sentence with PECS until she got what she wanted.
Eventually “Tootar” became “Cootar” — meaning “Computer,” as her articulation improved. I taught her requesting using verbs with a little travel PECS book that we brought swimming: “I want Mummy Jump” would get me to do a cannon ball into the pool. One day she got fed up with getting out of the water to make the sentence and just called it out while she was treading water: “I WANT — MUMMEE — JUMP!” I made a very big splash for her!
In 2008, when Grace was eight and Liam ten, they were finally accepted into a privately managed full-time ABA school called Saplings. We had waited five years for a place but it is no exaggeration to say it changed our lives. No more afterschool home based ABA tutors. No more stress about lack of clinical support services in their State autism school. No more poorly trained unsupervised “care” staff actually exacerbating behavioural issues. I was suddenly unburdened and ready for a new project!
My inspiration for using the iPhone came when I spotted an advertisement for the iPhone on the side of a bus in Dublin. To me, the main screen of the device in the ad, which featured a range of colourful app photos, looked like an electronic version of a Picture Exchange book. At that point I realised the iPhone’s potential as a portable alternative to the existing system and made contact with O2 Telefonica who were supporters of Autism Ireland, my advocacy group. They were very interested in helping and agreed to donate a phone to me as part of their Business Diversity Program.
That summer, Gracie and I got to work, getting pictures onto the iPhone and using it to request treats in the supermarket. But we couldn’t put them in order, and that was very frustrating, because the whole point of the picture exchange system is to put words in sequential order and build sentences that prompt correct speech.
I realised that I needed help, and luckily found a newspaper article about a gifted iPhone app developer, Steve Troughton-Smith. We communicated via Facebook and finally met for the first time at the start of 2009. I brought along all Gracie’s Picture Books and drew a big diagram on the back of a shopping bag.
From that Steve created a prototype which he loaded on to my iPhone, which Gracie adapted to expertly. The Big Picture Exchange Book stayed home to gather dust and the iPhone came out everywhere with us.
I started using the device’s inbuilt camera to take photos of things that Grace wanted which I stored on the iPhone for next time. Grace watched me doing this and one day I caught her holding the phone, trying to take a picture of a toy she wanted on eBay. She could have just dragged me to her laptop and pointed to it. But I could see she understood that it if the photo was in the phone, then I knew she wanted it!
I told Steve about this and he incorporated the photo application into the app which we then tested with four other children in Gracie’s school. He submitted the app to iTunes and it was approved late on the evening of the 11th March 2010. The Grace App was born. Over six months and 600 downloads later we are getting ready for a big update. I set up a Grace App support blog and with the help of constructive feedback via email we have made some changes.
You see, the thing about Grace App is that it won’t do all the work for you — it’s not a talking box for the child, and it doesn’t let the parents off the hook either. You have to work together, and help your child learn to communicate independently. So it is really for Parents and Carers who have worked successfully with picture exchange, who want to keep developing their child’s independent vocalisations but without all the hassles of printing, laminating, and the dreaded velcro!
We have also seen the development of the Grace App User’s independent expression as a result. By using photographs which they can take and save themselves, some of our families have experienced the joy of “Shared Attention” for the first time. This is when a typically developing toddler will look up and point at something they find exciting, like an Aeroplane or a Dog and say “Look!” — just for the pleasure of sharing it with you. When the toddler has developmental and communication delays which turn out to be Autism, this may never happen, and it is one of the hardest things for the parents. Needless to say the next update is going to include a shared attention prompt: The “Look!” card.
Grace App was recently chosen as the Best Mobile Application in the Irish Web Awards.
Being recognized by the Tech community increases their awareness of autism and how they can help improve the world for people with communication and learning disabilities. (I also encourage “early adopters” to donate their old iPhones when upgrading phones, then I restore the old iPhones and pass on to underfunded Autism Schools and Services.)
However the real Reward has been my daughter developing her independent speech, and spontaneously interacting with me — not because she wants something, but because she wants to share what she is excited about. We have become closer, and that’s made it all worthwhile.
You can read more personal stories from developers of awesome apps for kids with special needs at BlogHer.