Grace Apps for Autism: How an app can change lives

Apps can be fun. Apps can be useful. But Apps can also be incredibly important and irreplaceable in people's lives. This is a short story of how an iPhone and a young iOS developer completely changed the life of Lisa and her autistic daughter Grace.
Lisa Domican has two children, Liam & Grace. Both have autism and as a result did not develop speech. To allow autistic children with this limitation to communicate with their parents, Picture Exchange Communication Systems (PECS) are used. The term that might as well also describe an IT protocol is used to describe a rather hardware-driven solution: It is a selection of printed laminated pictures.

"The system teaches them to hand you a picture of a drink, which you quickly reward by giving them this drink," explains Lisa. "Little by little you teach them a vocabulary of different pictures for different things, all of which have huge value to the child. At the same time you are pointing to the picture and saying the name of each item in order to encourage the development of speech."

Autism: Pictures as language
The system worked well for Liam, and by the age of four, he started speaking without the pictures. His younger sister Grace did not. "By the age of six, she had over 400 pictures in her vocabulary – but could not say a word", remembers the Australian mother living in Ireland. "Her pictures were stored in a book that I had to carry everywhere, or risk the return to tantrums".

The book was heavy and not very practical, it was growing and growing, but it was the tool through which Grace communicated with her mother, so she took it wherever they went.

"Little pictures on a glass screen"

That is until a billboard gave Lisa a new idea: "Staring out of the window of our car as we paused at the lights, I noticed a huge iPhone advertisement on the side of the street. What grabbed my attention were the little pictures on what appeared to be a glass screen. I wondered if it would be possible to put Gracie's pictures onto that screen."

Lisa met the CEO of O2 Telefonica at an autism event shortly after, talked her way into getting an iPhone to try out for free. She was not much of a smart phone user before, but once she had worked out how to use it, she put the 400 pictures from Gracie's picture book on to the iPhone.

Putting the book in the phone

"Gracie was able to access the pictures the first time I showed her and with a point of her finger, she could get whatever she wanted, wherever we went, without carrying that big ugly book," Lisa says.

Still, accessing pictures on the iPhone was not intuitive enough for Grace to "make sentences" as she had with the hard copy system. And once again, coincidence worked in favour of Lisa. She saw a report about a young Irish developer, who made quite a bit of success with his iPhone puzzle game. "He is the first person I had ever heard of who did anything with iPhones. So I Facebook-stalked him, wrote to him." Steven's liked the idea of the app, said "that's a great thing", and that he'll ask his father to drive him to the mall, so they can meet. Steven was just 20 years old at that time.

UX: Not the parent, but the child is the user

"I had Gracie's book, I told him the story, I drew a diagram on a white paper bag - which is very much developer-style, as I learned later on." Communication between developing party and instructing party can be difficult. In this case it worked extremely smooth.

"Not only did Steve have the skill to code the App the way I wanted it to work, he also intuitively understood that this was to belong to the user, the person with autism..

So while it was quite complicated to create, it had to be simple and beautiful to use."

An early prototype was created, feedback send back and forth, and the App improved again and again. Eventually, the camera was included, so Grace could take pictures of her own. By now, she is able to combine pictures to full sentences such as:

"I Want  Toast (in) 8 Triangles (and an) Apple - Drink".

Steve suggested that they name the App after Lisa's daughter and Lisa agreed. "The Grace App" was born.

To express her gratitude, Lisa dedicated a combined blog post to him and Steve Jobs, entitled "Two Steve's who changed my life". Steven has been extremely busy, producing apps for different operating systems. Amongst other things, he did also work on porting Siri to the iPhone4. But as comparably simple the Grace App might have been from a technological point of view, it is for sure one of the most beautiful in terms of the use case.

International recognition

People around the world have gotten to know the great contribution of the Grace App, and the app is available to everyone through the iTunes store. The price is about €21 as apps of that kind cannot be advertisement-supported.

Thanks to the Grace App, people with autism can communicate easily with their family, without the need to carry around heavy books, which also often stigmatised them as disabled. Putting the picture system on a smart phone is a simple, yet a very elegant solution.

For this achievement, Lisa & Steven were awarded with prizes such as the Irish Web Award, the UN-cooperated World Summit Award Mobile and the "Women Mean Business" Award for "The Big Idea"

The App has now been translated into 7 languages including German, French and Spanish by Tethras, a mobile app localisation firm based Mountain View, California. and Dublin, Ireland.

 

The first Android version is also available on the Google Play store offering a lot more choice in screen sizes and more affordable pricing. Lisa is currently trialling a Samsung Note II with Gracie so look out for her feedback and some photographs on the blog and facebook page.

www.graceapp.com

www.facebook.com/GraceApp

By

Andreas Rothe

First published on Telekom Austria 22.12.2011

Best Case Scenario -Gripcase for iPad 2/New iPad

In the 5 years since I began developing Grace App I have paid for and trialled countless cases; Gripcase is the first one I have seen designed SPECIFICALLY for kids.  And kids are rough, whether they have extra needs or not!It is also the first case I have ever tried that got an immediate reaction on Facebook. Seriously, I put up one photograph when I unwrapped it:

And I get 15 comments asking where to get one.

You can get it online at CompuB Store  with delivery around Ireland.

The Gripcase is exactly what it looks like;  a durable "shock absorbent case that protects iPad during impact" The easy grip design means there is a lot less likelihood of dropping and incurring an impact.

As the mother of two autistic kids I checked on the chewability - the case is made of non-toxic materials that do not break up when picked at or bitten 

(I actually tested this myself: chewy with no weird aftertaste)

My Facebook Friend Eileen told me this:

"In our house we have two iPads between four boys with ASD. We did have a third although but unfortunately it was broken by my 6 year old. EJ has low muscle tone in his arms due to Hypotonia. When we seen the Gripcase we thought it would be a great investment to protect his iPad. What we have found with is that the handles are a lot easier for little hands to manage as they can wrap their fingers around it to hold the iPad while moving around. The iPad has been dropped on a numerous occasions, but with the Gripcase being made of a spongey material it has bounced !! Even when it fell screen down on the floor the Gripcase protected it. On the downside there is no screen protection. We had a screen cover already on the iPad but because the Gripcase moves slighty with use it has started to lift the cover. We have tried different protection cases for the iPads and the Gripcase is probably the best one we have tried."

and "I forgot to mention how EJ loves to chew it !! It's like incorporating a chewy tube with an iPad cover !!!!" 

She backs up her review with this:

The case is also very light as you can see above, and comes with a handy stand for watching movies or sharing a game. Unusually the stand works equally well on portrait or landscape aspect - not many cases do that.

While this case ticks all the boxes for many users, I don't see it suiting us. We use our iPads for typing and since I learned to touch type on a manual typewriter in the 1980's, I tend to be a bit hard on the keys. My son learned to type from me and is even tougher at about 150 words per minute!

So we are sticking with our covers with the built in polycarbonate covers, like Otterbox Defender III.

UPDATE: You can make Gripcase mobile as my friends at www.chatbag.net DO make a cover for it:

My pink camo one is on the way!

So I will be trying this out as a mobile protection for communication when the Chatbag arrives.
I am also delighted to recommend Gripcase for entertainment, therapy and especially hand-writing and drawing Apps where you need to use a finger or stylus directly on the iPad screen.

It could be the Best Case for what you need. xx

Updated to add this adorable video from Gripcase Australia showing the impact protection in action

The Amazing Mr Squiggle! or how embracing obsessions can make the world a better place for people with Autism

Today I am going to talk about Obsessions:

In the early days, a lot of well-meaning but very misguided 'professionals' might try to tell you to squash obsessions. Indeed when Liam was small and starting in a mixed special needs pre-school, the staff would take his Thomas the Tank Engine toys away from him and put them out of reach.
 This just made poor Liam more obsessed with holding them ALL the time and it became a problem when he needed to do other tasks.

The solution was provided by a teacher in his Autism Specialist School, who had years of experience of reaching children with autism. We got Liam a clear plastic pvc back-pack and when he needed to do a hands on task, she gently put all the Thomas trains in it, then let him wear it on his back.

When he completed the necessary task, he was allowed hold them again. Slowly he reduced the number of engines and increased his participation until he could happily attend at 'circle time'  holding only "Trevor the Traction Engine"  which was his favourite.

Opinion on encouraging or trying to extinguish obsessions remains divided. Even in the ABA community where you would expect people to be better informed about how to motivate and engage learners; you will come across the practice of  "banning" access to favourite TV shows, because they think it isn't age appropriate or worse, encourages the child to tune out.

It makes me grind my teeth in frustration when I read or hear about it.

Firstly; Why make a rod for your own back? If you find that there is a TV show or video that engages your child long enough for you to have a cup of coffee, a shower or even better; to go to the toilet with the door closed, (FFS) - why are you removing that from your child's life?

And Secondly; Why not use it as a force for good? One of the most effective tools in evidence based teaching is the power of 'Pairing" - using something that a learner loves to get them to feel comfortable with something new and engage with it.

Crushing obsessions can lead to all kinds of trouble as I explained above. Embracing obsessions or as self advocate Sean Foley calls them: "Passions" can be a way of reaching the parts that other teaching methods cannot reach.

The journey of embracing, then pairing and developing a wider range of interests for someone with autism can be as rewarding for the people who love them as it is for the person themselves. As Sean said in the 2011 RTE Documentary 'Living With Autism' -*

"Take a step into their world, and they in turn will take a step into yours"

My Facebook friend and fellow evidence-based education advocate Jodi has found this.
I will let her tell you her story herself:

"Hi there,

I wanted to talk about Ethan's interests and how tapping into his interests from early on, has helped to calm him, teach him things and helped him to cope with situations he finds difficult.

Thinking back with the knowledge I now have about my beautiful 7 year old, Ethan's very first special interest was the Teletubbies...when he was around 9 months old he was sitting on my lap while I was flicking through the TV channels and I chanced upon an episode of the Teletubbies. Immediately my active little baby boy started giggling with the most beautiful, infectious baby laughter. I hadn't seen him respond to anything with such immediate obvious joy before. 

A few weeks later while I was driving, he was crying in his car seat and on a whim I said "Eh oh!!" like the Teletubbies... he stopped crying immediately and giggled in response. So I continued and was delighted with his responsiveness to this interaction. Fast forward several  months and he would often wake up at night sobbing uncontrollably. We would try everything to settle him, I would breastfeed him, give him Panadol, cuddle him and rock him, but nothing would work...until one night we tried showing him a Teletubbies DVD. He would stop crying and stare at the screen, mesmerized until he calmed down enough to go to sleep. He was non-verbal as a toddler and most days would tantrum until we put the Teletubbies DVD on. 

Around age 3 his interest in Teletubbies waned as his fixation with The Wiggles grew. When he was 3 1/2 he was diagnosed with severe autism. One of the first indicators of his Wiggles interest was his amazing ability to observe the tiniest Wiggles logo in a shop, he would cry and reach toward the logo and I would have to stop, search hard to find the logo he had seen so easily, and let him look and touch it for a few minutes before he was happy to move on. He would want to watch Wiggles DVDs everyday, and would spend hours standing on our bed, watching his reflection in our big mirror as he performed the actions for "Everybody Clap". Every night was a crazy show as my husband and I sang and danced "Hot Potato" to keep our little guy happy and distracted enough to eat dinner. Ethan learned colours thanks to his fascination with The Wiggles. 

After a while we realized we could use his interest in The Wiggles to teach him concepts, work on his speech and language, motivate him and engage him. When we was 4 1/2 I wrote a letter to The Wiggles, explaining how much they had helped him learn and that his interest in them had been an important learning tool and motivator for him.  Following receipt of the letter, we were invited to come and meet the Wiggles prior to a concert...the joy and amazement on Ethan's face when he first caught a glimpse of them was priceless and unforgettable...and led to an even stronger interest in them!

Mr Squiggle. An Australian children's television favourite since 1959. His assistant in this photograph is Miss Rebecca.

Ethan's next major  - and still continuing - interest was Mr Squiggle. His grandfather had found a Mr Squiggle toy at a garage sale and bought it for Ethan. Ethan immediately fell in love with his new toy, and Mr Squiggle accompanies us everywhere. Ethan had always loved drawing and when I showed him You Tube clips of the old Mr Squiggle shows, he was enthralled and even more smitten with his new friend. He sets Mr Squiggle up with a blackboard and makes him draw pictures.

 

Ethan and Mr Squiggle have drawn a monster

See; Mr Squiggle has his glasses on too!

Over time Mr Squiggle has become a great tool to help Ethan cope with challenging situations such as doctor or dentist visits...he seems to find comfort in having his little friend come along. 

Often Mr Squiggle will have a turn first, making it easier for Ethan to face these situations. Recently Ethan sustained a broken tooth which has required many dentist appointments and Mr Squiggle has been a faithful companion, helping Ethan to cope.  

 

The Dentist "get" Ethan's passion- she drew this.

Ethan's interests are all encompassing... 
and instead of trying to get rid of his "obsessions" we have focused on using his interests and passions to help him learn, motivate him, and help him face the challenges this overwhelming world sometimes presents.

 

My little boy teaches me so much everyday and has helped me to see life from a different, much more interesting perspective. Along the way he has helped me rediscover forgotten aspects of my childhood...such as Mr Squiggle! " **

Ethan and his best friend.

UPDATE: The very lovely Miss Rebecca who features on the DVD cover above is actually Rebecca Hetherington, the daughter of the late Norman Hetherington who created Mr Squiggle and friends and "enabled" Mr Squiggle himself for the 40 years that the show ran.
Yesterday she read our blog and wrote to Ethan's Mammy today:

 
I think my heart might just about burst with love. Thank you Miss Rebecca. We wish your father could meet Ethan too.

xx

**Disclaimer: This editor absolutely adores Mr Squiggle too. Still have my own Mr Squiggle toy. 

Be Amazed, Part 2

The amazing Temple Grandin was in Dublin this week for an Autism Conference.

Her TedTalk bio describes her as:  "diagnosed with autism as a child, talks about how her mind works -- sharing her ability to "think in pictures," which helps her solve problems that neurotypical brains might miss. She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids"

Temple Grandin has an an enormous impact on global thinking about autism and the potential of autistic thinkers to contribute to society. But her greatest gift to parents is helping us understand the how and why that our children see the world and act the way they do. It helps me to empathise with my children's autism and see the same tendencies to be visual and spatial myself.

Her book "Thinking in Pictures" describes how she is able to build entire visual systems in her mind. She can envisage something in detail and see it from every angle, as whole. It must be a bit like one of those 3D games that you wear special goggles to play but without having to pay someone to write the code. It is a huge advantage when it comes to actually building effective and humane systems like the livestock handling corrals for which she is famous.

We parents see this "whole picture thinking" in our kids when they begin to draw like Sean Mulligan who you met in my last post.

Today I want to introduce you to Dash*, another gifted visual thinker. His Mum describes him here:

"Dash is 10yrs old and was diagnosed with autism 6yrs ago – not the high-functioning / genius type that you would hope for, if your child was to be affected by a condition, but at  the classic pre-verbal end where the challenging behaviours and intellectual disabilities lurk.

He is a handsome, happy, lovable boy who loves Thomas the Tank Engine, The Gruffalo, Music and Drawing.

We are lucky, Dash is now verbal but his language didn’t develop as a typical childs did.

In the early years, to help encourage language we read lots of books and sang lots of nursery rhymes.

To help reduce Dash’s upset and stress we would sing routines and I am convinced that it was his love of rhymes and songs that ultimately encourage him to talk.

Today Dash language is still very echolalic. He is very good at labelling & requesting and can recite massive chunks of Thomas the Tank Engine, several Disney videos that he loves and many many many nursery rhymes

In the early days to help encourage improvement of Dash's fine motor skills, we bought a ‘doodle-do pad’ (Dash’s word for it) which is an etch & sketch to the rest of us, and it was through his doodle-do pad that we discovered Dash's love of drawing.

The Gruffalo

Most of Dash’s drawings are characters from books or programmes /dvds that he loves, or covers of his books or dvds too, and to say that he is prolific is an understatement!!!   

We currently go through about a ream of paper a week and the best thing you could buy Dash is pack of printer paper and a set of colouring pencils.

 

We're Going on a Bear Hunt - DVD read-a-long cover.

Of course as with any ‘passion’ there is always a down side – Dash’s love of drawing unfortunately isn’t restricted to paper.
We have over the years have substantial amounts of art work adorn our walls / windows / roller blinds  and he is so generous with his artistic skill he doesn’t restrict it to our house and has been known to leave “mark” on the ceiling of friend’s houses (sorry Katy )  – Michael Angelo eat your heart out :D"


Dash might have started his drawing career with an 'Etch a Sketch" but he was born into an era of iPhones and has recently begun to take selfies, which demonstrate not only his talent, but his eclectic musical taste:

His Mum decide to share this one to the artist that inspired it, posting this on his website which she shared with us on Facebook:

 Hi Damien - just wanted to share this picture with you. This is my son "Dash' - he is 9yrs old and autistic - but he absolutely loves your Rocky Road album (good taste in music ehh? :D) and this is him recreating the album cover today.
 
Hes been taking pictures of himself posing with a glass on my iPhone for a few days but it has taken us days to figure out what he was doing.
 
It was only today at dinner when he said 'Damien Dempsey music' that we twigged what he was up to.
Thought it was cute and would share that your music touches many.

Dash particularly likes your version of the Twang man and Kelly From Killan - so we get to hear them repeated over and over daily

Hope this brings a smile to your face, as much as it does to ours,

Dash's Mammy xx

And Mr Dempsey replied:

"Thanks very much for that, it warmed my heart. I should take a leaf out of  'Dash's' book and try what he's havin, it looks a lot healthier!
Tell Dash to not go chasin the twang mans mot, or any other oul hen! Gra Mor, Damo."

 Seems we can all be amazed by Autism.

*name changed to protect the identity of the artist, until he decides he wants to be famous.

Become Aware, Accept and Be Amazed in Autism Month

Meet Sean Mulligan

Well, this is his "insides" - Click on it to make it bigger and you will see a pretty accurate representation of what goes on inside our bodies.

Sean is one of the 1 in 88 people who have been diagnosed with an Autism Spectrum Disorder. 

Autism is a sensory disability that can affect everything a person sees, hears, touches, tastes, smells and feels, including their motor planning and sense of balance.

While a large number of people with autism will be non-verbal, it does not necessarily affect intelligence so you should never presume that a person with autism does not understand you.

What you can presume is that whatever level of competence they are able to demonstrate, they probably had to work twice as hard as anyone else to achieve it. Holding a pencil, walking in a straight line, keeping their arms still when they are happy, even looking you in the eye can take a tremendous effort and life can be quite stressful, however "normal" they may be trying to appear.

However, what I like most about autism is how the "unders and overs" of sensory perceptions can lead to a unique way of looking at the world. My own son makes me laugh everyday as he mashes together 2 or 3 films based on the character roles the actors may have taken at different times.

For instance, he is convinced that the actor Mandy Patinkin  does the voice of the seagulls in "Finding Nemo"  Why? because Mandy Patinkin played the character Huxley in "Elmo in Grouchland"

Huxley has a problem with sharing and at one point he sings a song called "Make it Mine"

Mine Mine Mine.......

 Get it?  

 










I don't think enough people really "get" how interesting and remarkable people with autism can be. So this month, which the United Nations General Assembly has designated to "raise awareness of autism on all levels in Society" (according to Wikipedia) I am going to run a few posts about exceptional people like Sean.

His proud mother Ann Mulligan can introduce him:


"Sean is 10, he will be 11 in August.  He is our eldest child, we have an 8 year old girl Sarah.  

Sean was diagnosed with PDDNOS or Atypical autism at three and a half years old.  We knew absolutely nothing about autism then in Feb 2006 and were obviously devastated.  

Fast forward to 2013 and Sean is the funniest, most clever, kind hearted, intelligent little man and continues to amaze us on a daily basis.  Just yesterday telling me "jeesh, take a break, take a kit kat" when I was annoyed with them over something trivial!!  This from the boy who didn't call me Mammy til he was nearly 4.  

From the boy they said ('they' being the clinic where we went for a diagnosis) was only going to be able for special needs schooling.  I have high hopes for Sean and really feel so lucky to have him in our lives.  
He still has very difficult days, days when the world is just a bit much for him but he is able to verbalise this and has through many hours of play therapy learned how to turn the dial down on his emotional reactions to situations.  He is much less likely to have a major melt down now.  
He is more confident and happy around those he knows well and still finds social interactions difficult such as talking to a waiter or shop assistant very hard but these too are getting a bit better.  He can be quite stiff and formal around his peers too and sometimes I wish they could see the really cool version we get to see at home!!  
But hey, he has come such a long way and he is by no means finished yet."







This, as you can see is what would happen if Angry Birds made eating fruit and vegetables more interesting!

 
If you know someone like Sean or you just want to share something fabulous about someone with autism, send me an email with a photo and a few words and I will feature it. Because I think everyone deserves to know more about autism, so they can be more aware, accepting and amazed by how great they can be.

About Me

Recently I was back in my hometown of Ballarat to do a series of Grace App workshops. These were in aid of www.turnalifearound.com.au - a charity run by a Bendigo school teacher called Jacqui Righetti who was inspired to fundraise to help Autistic people to communicate. She collects old iPod Touch (3/4th Gen)  iPads and iPhone 3Gs, 4 and 4s and raises money to buy new devices for families who do not otherwise qualify for government funding. If you can help please visit www.turnalifearound.com.au and contact Jacqui.

Part of drumming up some publicity for the cause was making contact with the local media who covered it here in the Bendigo Advertiser and on ABC Radio Ballarat's Steve Martin show, And in the newspaper I grew up with: The Ballarat Courier.

They took a different spin, asking me to contribute to the "Catch Up With" section as a former resident. My sister gleefully tweeted the resulting article last weekend with yet another "what was I thinking?" photo....

So far so chatty...

What the?

While I was at home I went to my lovely Grandma's 90th birthday party which was attended by my also lovely Grampa who is 92! You can read about his birthday here on the Spirit of Carlton Website as he is a life member.

Gramps and Granma with me and my Suzie Quattro Shag-do

After the party, my Mum for some reason* decided to give back all my old school reports and photographs (?)  So in the spirit of self examination; I will reproduce a few of my old school portraits, along with the questions and my answers here:

The Courier "Catch up With": Lisa Domican

Full name: Lisa Domican



Occupation: mother, social entrepreneur

Family members: Husband Bill, son Liam and daughter Gracie.

Interests:
Travel, hill walking in the Wicklow mountains, eating sushi & dumplings.

My earliest memory is...  Writing to the Queen to protest the sacking of Gough Whitlam.  (seriously)

Hmm, some time around 1975?

When I was a child I wanted to be... A vet, an air hostess and an actress.

My greatest moment in my life was... Hearing my daughter's first word. (She was 6)

In four words, I am... Woman hear me roar

Grade 6 in 1980. And I had no right whatsoever to wear a Maori Headband)

I wish I'd never worn... White lace. Ever.

Cat or dog? Dog. Outside dog.

I often wonder... Why anyone would knowingly wear crocs?

When I want to spoil myself I...drink champagne in the bath. Alone.

Drinking champagne and taking selfies in Singapore Airlines Business Class - points upgrade!

The first thing I reach for on a Sunday morning is... My iPhone.

The hardest thing I've done in my life is... Say goodbye to my youngest sister.

My ideal day would be spent... With my husband and both my children walking in the Wicklow mountains, followed by roast beef dinner with an excellent pinot noir and a TV movie.

If I could change one thing in the world it would be... The distance between Ireland and Australia.

After life there is... Whatever light you've left behind.

I love... my family. And wine. And coffee. Real coffee. 

  
In life, I have learned...there is always a way.

Pouting again, in 1985

 
My pet dislike is... People who sniff when they really should blow their nose!

I can't live without... Yoghurt

Before I die I would love to... Make inequality unacceptable.

If I could invite any five people to dinner they would be..., Tina Fey, Micheal Palin, Sir David Attenborough, Gough Whitlam and Louis Theroux.

The meaning of life is... Love

If I could be anyone else for a day I would be... Gloria, from 'Modern Family'

I'm passionate about... COMMUNICATION!

A book/movie/song that inspires me... Bob Geldof's biography "Is that it?" - whenever things seem impossible, I remind myself how one man made  "Live Aid" happen.


If only I could... Sing.  

±±±±±±±±±±±±±

*Will blog for free psychotherapy