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Grace App for autism free on World Autism Awareness Day, 2 April 2011

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Screenshot of Grace App; supplied by Lisa Domican

We’ve recently ordered an iPad2 for Karan, having heard a lot about how apps are being used to encourage people with autism to communicate. My brother is non-verbal, which means he does not talk to communicate with us. He has a few signs, but a lot of times we guess what he wants, based on cues or routines.

I’ve heard about a lot of apps on the iPad/iPhone for people with autism and this is one of them – and it’s going to be available for free on April 2 2011, which is World Autism Awareness Day.

Lisa Domican is a mother of two children with autism. Her daughter Gracie is severely autistic girl who doesn’t speak a lot but uses pictures to communicate. Lisa explains the concept of using pictures well: “Many kids with autism or speech delay use pictures attached to a board to ask for what they need or say how they feel. These boards are stored in a book which they have to carry around with them. Even if and when they begin to say a few words, they may be difficult to understand and so they rely on a growing picture vocabulary which can become very unwieldy.”

She says, “I wanted to keep supporting her speech development by prompting her to use her own voice – with the support of her pictures anywhere.”

She developed Grace App for this purpose and explains how it works: 

Grace App replicates the picture exchange system by storing a basic picture vocabulary of Foods, Things I like, Places, Colors, Sizes and Shapes on an iPhone with a function for creating a sentence. It can also be used on iPod Touch and iPad. On the smaller devices you tilt and the cards are enlarged for you to point and read together. iPad works on Landscape or Portrait view with the pictures big enough to be read easily without enlargement. There is also a facility for finding, taking and sharing photographs of all the other things that you may need or want. You can sort the pictures into categories, delete those you don’t need and teach the child or user to add their own independently – giving them power over their communication choices.

The app was created with the support of O2 Telefonica and developed by Steven Troughton-Smith. Grace App was awarded a United Nations, UNGAID sponsored World Summit Award for m- Learning and Education in 2010.

So those interested in trying out the app can consider getting it on April 2 2011 when it will be available on the iTunes store for free. Once you have the app (whether you’ve downloaded it for free or bought it) you will be able to get whatever updates the app undergoes in the future. A major update will also be launched soon.

Lisa says, “My goal is to engage and inform as many educators, therapists, parents, carers and service providers about Grace App and hopefully as a result, get the gift of independent expression to as many people with Autism and other disabilities as possible. Everyone should have the right to say what they want. My aim is for them to get it!”

I think it would be interesting to see how users can customize the pictures to get the person with autism to communicate with a familiar photo. I know that when I try this app out I’d love to add our own pictures, just so that Karan has a sense of familiarity and it hopefully won’t be too hard for him to understand how to use the app. Last night, while we were getting ready to sleep, he pulled me downstairs and signed for food, then tried to open the fridge, then signed for toilet and ran back upstairs. It’s times like these I’d like to know what he really wanted. So fingers crossed, that apps like this one will clear up communication channels between us.

For more information, check www.graceapp.com

Disclaimer: I was contacted by Lisa regarding the app; I endorse her efforts to help people with autism. I have not tried the app myself, but will be doing so once I get the iPad2 I’ve ordered.

Remember #autism even after #DubaiTwestival

At Dubai Twestival, I was given the wonderful opportunity to speak for a few minutes about autism, given my personal interest in it. I remember having a vague idea – a bullet point list if you will – of things I wanted to cover in the 2-4 minutes I was allotted. Problem was, once I started talking…well, autism is something I can talk about for ages, so I went along my own meandering path, going wherever my synapses were telling me to go.

So…now that I can put pen to paper (or fingers-to-keyboard-to-screen) and try not to get distracted emotionally (as I did in the middle of what I was saying at Twestival…remembering how society in general has treated us sometimes was painful), here’s what I want to say to everyone reading… 

As I mentioned while talking, the awareness among people in Dubai about special needs and autism is appalling. It really is. Granted, there is so much more awareness over the last few years…but remember, I’ve been around in Dubai for dog’s years. I was here when Karan was diagnosed, I was here in the late 1990s when there was no help for us, I was here in the 2000s when we’ve faced problems over getting him into a good school. The general public just doesn’t know what it is. Either they’ve never heard of autism, or they have some fandangled opinions about it. The textbook definition will tell you that autism is a lifelong developmental disability where the person has impaired communication skills and social interaction, and can indulge in repetitive behaviour or be obsessed with something. It’s true enough. However, there are so many other issues…readers of this blog will know we’ve dealt with non-verbal issues (Karan does not speak to communicate with us), clothing issues, food issues, self-help issues and so much more.

One VERY important thing: if you’ve met one person with autism…you’ve met one person with autism. Each person with autism comes with their own set of unique challenges. The standard definition is like an umbrella, if you will. While that definition holds true, you’ll find n-number of differences with each autistic person who overcome completely different obstacles.

Now I’d like to appeal to organizations and businesses within the community. With the current rates of autism (1 in 110 globally, think it’s 1 in 100 in UK, lower in other places), within the next 5-10 years, we, the society, will have on our hands a massive number of adults with autism. It’s an employment resource just waiting to be tapped (and here I acknowledge that sadly, there are some adults whose autism is severe enough that they cannot work throughout their lives). Like in the neuro-typical (NT) world (or all you so-called “normal” people out there), it works the same here: if you’re good at something, that’s where you would like to get some work. Just because a person has special needs doesn’t mean they cannot be a productive member of society. It is so important for people with special needs – not monetarily, mind you – to have a sense of self-respect and self-worth (and goodness knows a major chunk of society gives them no respect whatsoever). Employment is a way of enhancing self-esteem and self-worth, and gives dignity and acceptance to anyone. I know of a couple of organizations in the UAE that do take on interns with special needs and give them jobs, as part of a social responsibility program. My brother’s school is heavily involved in placing their older students with organizations such as banks and hotels. Students are also encouraged to focus on an activity that they are good at and can hold them in good stead when it comes to future employment. Yes, it’s a little bit of extra work, and extra training… but trust me, organizations will find that once the person knows what he/she has to do, they will not stop at anything to get it done for you. Think about it.

So please… don’t forget about autism. It’s here to stay… it’s the so-called NTs that need to adjust.

Donate books to help raise funds for special needs school

Hello,

I’m blogging to appeal for book donations. Manzil, a centre for special needs children, which is based in Sharjah, is planning to host a book sale sometime in June (I don’t have exact dates yet) to raise funds for their school.

My brother has been going to their school for quite some time now, and has made tremendous leaps and strides towards being able to care for himself. Their school isn’t as large as some of the more commonly known special needs institutions out there in the UAE, which is why they’re probably more in need of funds and support. They do great work and have a lovely, qualified staff who take pride in what they do.

If anyone has any books they’d like to donate, it’s terribly easy. Autism & Us has partnered up with TwitBookClub to host this tweetup: Books for … Manzil. We’re collecting books to donate to Manzil to feature in their booksale. #ManzilBooks makes it easier for the Twitter community to gather and donate their books for a good cause. And when the booksale is being hosted in June, they’re expecting to have 10,000 books to sell, so I’ll put up another twtvite closer to time. Books and charity…it all goes rather well together!

So anyone cleaning out their bookcases, get over to the twtvite page and RSVP immediately!

Thank you.

The R-Word. Stop using it. Now. @EndTheWord

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Image courtesy http://www.r-word.org

Over a year ago, I’d written something to submit as part of my portfolio for my Master’s degree. Here’s a short excerpt (read the entire piece here):

Too often people use disabilities as an abusive way of insulting the so-called normal human beings. A few years ago, my family and I were in a restaurant, my then 4-year-old autistic brother started crying and refused to calm down. A patron sitting at the next table looked over and said very loudly: “What’s wrong with these people? If they have retarded children, they should keep them at home.” Then we were asked to leave the restaurant by the management because ‘the other diners were getting disturbed’. It hurt. It hurt because my brother is not retarded. He, like thousands of other people has an autistic spectrum disorder. It also hurt because it was acceptable then (and still is) to insult someone by way of calling them ‘retarded’ and prevent them from experiencing a routine aspect of life. It’s absolutely abhorrent when one hears the word ‘retarded’ being thrown around as if it were commonplace even in classrooms in secondary schools.

Last night I saw this tweet from Ellen Seidman (or @LoveThatMax as she’s known on Twitter):

Twit friends: For next week I’m tweeting at people who use “retard” as a hashtag—and asking them to take this pledge http://www.r-word.org

I had a look at their website and signed the pledge, and plan to spread the word as well. It just drives home the point that I was trying to make a long time ago: the r-word, or “retard(ed)” just hurts. It’s incorrect, offensive and derogatory.

The website has informative pages on why you should take the pledge, as well as an explanation of why the r-word is hurtful. While you’re at it, have a look at how many times the word has been used on the world wide web, on the R-word counter.

My brother isn’t retarded. He has autism. He doesn’t suffer from it. Give him, and anyone with intellectual disabilities, respect.

The Birthday Post

Karan was the birthday boy two days ago when he turned 15.

FIFTEEN!

In the evening, I thought we should take him to the beach. Hilarity ensued when he decided he didn’t want to walk through the sand and stayed put for the better half of the 45 minutes that we were there. Although I think he was mollified when we bought him cake, which he gorged on once we got home.

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To all those who remembered and wished him, thank you!

Our big boy loves big cars

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Mom’s old car was sold 10-12 days ago. A new one came less than a week back. Rather than get upset with the change, he absolutely adored the new car. It’s big, spacious and high enough for him to peer out the window when we’re cruising on the hot Dubai roads, just like the previous car we had. I was informed that when they went car hunting, he got into this car at the showroom happily, but refused to clamber into a smaller car. He’s a space junkie for sure.

When he got into the car, he couldn’t stop grinning, and laughing a bit towards the end of his first drive in the new car. Just seeing the happiness and excitement on his face made our day.

A very special Sports Day

 

Karan’s school, Manzil, organizes a Sports Day for its students, which is usually held in Al Thiqah Club, Sharjah. Every time, Mom and I head over to cheer all the kids on. We’re never told what Karan is doing – it’s always a surprise every year.

Now, Karan can be quite active, but only when he wants to be. If we tell him to run, or play, or do absolutely anything, he’ll clam up. For Sports Day, we just hope he’s in a good mood so he gets to participate as well.

This year, he was in two races. One involved him wearing some kind of paper giraffe hat, running to a vine with a string of leaves, picking up said leaves and running to the finish line. Haha, only he hates wearing stuff on his head…so when he ran to the leaves vine, he pulled off his giraffe hat and fiddled with the leaves. Still, he came third, after ambling. No running for my lazy darling.

The next race, he was given a basket and he had to pick up objects in his path, put them in the basket and run to the finish line. He did not run. However, he did amble a bit faster than usual, so he came second in the semi-final which put him in the final, where he came second again. Here’s the video of the final:

Not all of the kids are fast or want to run, and some don’t know why they’re doing it (like Karan for example). But it doesn’t matter. When someone crosses the finish line first, the audience (all parents except me!) cheers. And so on. And then the race is over but for one cute little kid far behind. It doesn’t matter. We scream, we cheer, we shout encouragements. Then when the child passes the finish line, we whoop.

Some of the memorable moments from the day include:

  • A little one who probably comes up to my knee moving his tiny little legs as fast as I’ve ever seen, looking adorable as he did.
  • A student who runs super fast, raising his hands in victory even before he crossed the finish line. He won.
  • Another student is one my favourites to watch on Sports Day. His enthusiasm and positive nature is unflagging. Every single year, whether he wins or loses, he crosses the finish line and raises his hands above his head, pumps his fists and looks at the crowd, cheering him on. This year he did not disappoint. I love love love LOVE his attitude; it’s so uplifting. He won a couple of races this time and I’m so happy he did.
  • Students running towards the finish line, then abruptly stopping a millimetre before the line, wondering whether they should cross it or not. Cuties.
  • A cheerleading performance by the students.
  • The Millennium School in Sharjah runs a Best Buddy scheme with Manzil, where some of their students volunteer for events, as they did for this day, and pair up with those students at Manzil able to communicate and become their peer buddy. They were terribly helpful during the event.
  • There’s always a race for the Moms and Dads who attend the event. Mom doesn’t participate because of her problems with legs, but generally I do. This time however, I’d managed to splay myself on a Karama sidewalk the day before and my knee looked like splotches of purple, pink and green, and my right leg was in some discomfort. So I declined to run. However, the best buddies clamoured around us because we were among the few not going down. Then those kids called me ma’am and aunty!!! I was appalled and even more determined to sit firmly in my seat. Aunty…AUNTY?!?!?!

Some pictures:

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I love attending events like these, and his concerts for example. It’s such a testament to what these children are capable of. It’s also so much more laudable considering the issues they face on a daily basis. For the NTs (neuro-typical…that’s all the “normal” folk to you), it’s just a race. You run. You place first, second, third, last…whatever. For my brother, it’s an achievement.

Congrats on your certificate Karan!

The One with the Taxi: Karan’s Big Adventure Part 4

Guest post by Adita Divecha, Karan’s mother

Once we had to go to Madhavi’s (Rajiv’s sister) place by cab since the car wasnt available. So we we left our house and went downstairs to get a cab. Luckily, there’s always a long line of Fiat taxis – the black and yellow ones – just below our house. We, ie myself, Karan and Rajiv, hailed a cab.

The thing with these taxis is that the doors don’t open all the way. I told Karan to get into the taxi, but he refused. He kept staring at the taxi for a while. Then he put his head in and looked at the seat and then he came out again. It was quite comical. Then he stood there looking at me with a frown on his face. Rajiv kept telling him, “Go inside” but he refused and kept doing the same thing around 3-4 times.

Then he slowly put one leg in and then brought it back out. Finally I got into the taxi and told him to come in. I said, “Come in, see Mummy is also sitting here”. Still he refused. Then I showed him his koosh ball (which he likes)…and he finally got into the taxi. Then Rajiv sat in the front passenger seat.

Karan was staring at the taxi driver. The taxi driver was, in turn, staring at us wondering what was going on, wondering why such a grown-up looking boy wasn’t getting into the taxi. Karan was constantly making the sounds “AAH! AAH! AAAH!” and held on to my hand tightly, with a look that felt as though he was wondering where his mother was taking him. When the taxi reached its destination, Rajiv opened the door and Karan couldn’t get out of the taxi fast enough.

We didn’t sit in a taxi again.

Clearly my son was born in a 4WD (he’s recently been refusing to get into any other kind of car, and if he does, with some hesitation).

Backtrack to: The One with the Flight (Part 1), The One Where Karan Goes to a Dentist and Pets a Dog (Part 2) and The One with the Road Trip (Part 3).

When we interrupted Karan watching @BeingSalmanKhan

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So Karan likes watching Salman Khan on television, and likes quite a few of his songs. It does depend on his mood though – if he’s in a good one, he’ll watch whatever’s happening on TV and smile. If he’s in a blah mood, he’ll sit quietly but listen.

The Filmfare awards was being broadcasted, and there was a Salman Khan dance sequence. He settled down in the sofa opposite the television and watched. I was standing there with Mom’s phone, knowing I’d end up catching him grinning or laughing, when he turned to look at me, opened his mouth wide, didn’t make a sound but gave me this look!

It was a “Quit bothering me, I’m trying to watch TV!” look non? 😀