Author Archives: Devina Divecha

Karan goes back to art!

Guest post by Adita Divecha, Karan’s mother

The second session was at the Raffles Hotel near Wafi.

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When Karan and I got there, everyone was in the lobby.

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Nicola came and took us to the third floor, to this huge banquet hall which was almost empty except for two large round tables.

Then representatives from the Raffles Hotel came and met all the kids and then said they would like us to look around the Botanical Gardens. There was a door which opened out onto a huge terrace and the Botanical Gardens were there. It’s actually the roof of the mall which they converted in a garden, with canals running through it with fish in them, surrounded by trees and flowers.

We then took a tour of the gardens. Karan was really excited especially when he saw the water.  I actually thought he was going to try jumping into it. There was also a fountain there and because there was a lot of wind, the water was spraying on his face which he really got excited about. He was in a happy mood.

Then we went back in and all the children sat on the tables on which were paintbrushes, paper and paint…even crayons and pencils. Karan only does his art with a brush and thick paint.

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So he got to work, took the brush, dipped it into the bowl… “Dip and dab, dip and dab,” is what I have to keep telling him.

Everybody’s art was later kept on the side to dry. Karan did three paintings.

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They even gave the children cookies and something to drink. Karan just had the chocolate cookie. He was very happy. One of the other girls kept saying, “don’t get so excited!”

Then they gave certificates to each child for attending the session. So all in all, it was a good day!

iPad2: will it help or won’t it?

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The iPad2 arrived yesterday and I think we’re keeping our fingers crossed. Karan’s only played with the Talking Tom app right now and so far he’s loving it. He’s been blabbering to Tom for a while, much to our delight. We’ve also started populating the Grace App with pictures he is familiar with and have started getting him picking a picture for whatever he wants before he gets it.

We’re definitely not expecting miracles…he’s not going to suddenly start communicating in a day and we know that. I think we’re just hoping he takes to it, gets comfortable with using it and is able to convey what he wants and what he thinks to us.

Karan’s first Tuesday Workshop @thejamjar

Guest post by Adita Divecha, Karan’s mother

Note: Sorry I didn’t take any pictures; Devina already told me I should have!

Devina had arranged for Karan to join the Tuesday Workshops organized by START at the Jam Jar in Al Quoz. They have 1/1.5 hour sessions every Tuesday where children with special needs get to do some artwork.

Karan has been doing a lot of painting in school and we thought this might be something he would enjoy and hopefully get involved in.

I was a bit nervous initially; I’ve never taken him outside for painting or art before. But I drove to the Jam Jar yesterday and found it easily enough. It’s a big open space inside and there were a few people already there, sitting at the long table with thick sheets of paper in front of them.

We met with Nicola who was from START and I signed in. There were also people from Dubai One filming, although I’m not exactly sure for what. They were asking volunteers questions about their work at START I think.

The volunteers were getting the kids to dip their fingers in thick paint and copy the artwork in front of them. Karan isn’t very good at imitating yet, and he hates his fingers brushing against in any new substance, but we tried. He dipped one finger into a bowl of blue paint and had the most pained expression on his face as he did so. He then wiped his finger all over his t-shirt. Then we hurriedly put an apron on.

So I asked for a brush for him and then he was okay. He did four paintings; didn’t copy the design very well but had wonderful splotches of bright paints all over his sheets.

After an hour and a little more, he got a bit whiny so we decided to leave while he was still in a reasonably good mood.

I think he liked it … let’s see what he does next week.

Eight things to remember about a mother of Autistic children – Cleveland Stay-at-Home Moms

I am the mother of three developmentally disabled boys; each falls at a different place on the Autism Spectrum. This is what I wish others knew.

1. I love my children, very much so. If you watch us together and it appears that I have not connected with my child; please don’t judge me. I have done everything within my power to connect; we have managed to the best of our ability.

2. My child is not spoilt. I do believe in discipline. He also has a serious disability, which makes him appear unruly by choice. This could not be further from the truth most of the time.

3. Yes, my children will talk and even babble while we sit and try to enjoy a nice dinner out of the house. They are not screaming, fighting, or even throwing food. You have no idea how unusual this is. However, I apologize; they do not mean to “ruin” your evening. We are simply trying to enjoy something that every other family in America takes for granted.

4. I am a stay-at-home mom. I often forget that we do not live in a house in a bubble and the rest of the world is able to hear us. I am aware that you are able to hear my boys screaming and throwing massive fits. I am not abusing them; they are simply very upset. You don’t have to believe me on the abuse. If you so choose, you could decide to speak with any of the government agencies we are currently working with; quite a few of whom are in our home on a regular basis.

5. I am also a woman with feelings. I know that the odds of me being able to attend your party or Girls’ Night Out of dinner at AppleBee’s and a movie at Tinseltown are slim. However, that doesn’t mean I wouldn’t like to be invited. It’s just a little gesture that shows you haven’t forgotten I exist.

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6. Please try to remember that I’ve lost many friends and even some family along the way on this journey that is Autism. When I call you to vent I am not trying to burden you with my life. I simply need a sympathetic or perhaps an empathetic ear to listen, nothing more.

7. In addition, each of my boys also has Sensory Integration Disorder. They either seek out or seek to avoid sensory related things. If these sought after actions results in a trip to the Emergency Room, please do not treat me as if I have Munchausen by Proxy. I also am likely not over-reacting; however, I have to be overly cautious. My boys can’t communicate effectively so it’s best for me to take them in to be sure. Think of how you might feel if you were me and you didn’t check and something was broken or seriously wrong.

8. Above all else, please just try to be supportive. I love my children more than life itself. You don’t have to live my life or agree with my methods but everything I do is for them. A little support and perhaps some love from my friends and family would be nice.

via examiner.com

I read this and many points resemble my life… all except 7 because Karan doesn’t have SID although I can completely identify with the author of this post.

Awareness is not Enough – What Autism Means to Me (The sibling’s view)

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me…

Echoing what my mother said…it’s a way of life. I don’t know if there is any other way to be, any other way to live. Families that go on outings, plan weekend trips together, go for movies, dinners, lunches…it seems surreal to me. It seems like a completely different world. And I’d imagine that’s what my world seems like to you. I grew up with autism. It is my life now. Some pictures from our growing years…

Italicized open letter courtesy Autism Understanding and Acceptance

Awareness is not Enough – What Autism Means to Me (The Mother’s view)

Guest post by Adita Divecha, Karan’s mother

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me..

It’s a way of life. Everything in my life is centred around it. It dictates what I can and cannot do. Because of it, sometimes I do feel that I don’t have a life. And it’s not just me…it’s Karan as well. Does he really have a life? He can’t do so many things other 15-year-old boys do, he doesn’t have fun the way they do. It’s limiting. When I look at other 15-year-olds, I feel bad for him because he is, in a way, missing out. It’s not so much about me than it is about him. Normally you’d think when your child is 15, they can look after themselves and you’d be free from certain responsibilities. But my son is going to be a baby, mentally, all his life. Hopefully he will be completely independent in a few years but he will always be a child compared to other people his age. Your child has not grown up. Karan hasn’t grown up. He will not really grow up. It makes me sad to think that he isn’t truly experiencing everything as he should have done. But for me, it gives me constant stress because all I’m worried about is what will happen to him when I am not there. It stresses me out to an extent you will not believe.

Yes, autism has taught me to be more patient, to be strong, to be loving…more than I could have ever thought. It also helps in the sense that you come to know what people are really like; faced with autism, some people turn out to be nasty in a way.

It’s very easy for people to give talks and seminars and tell me to go out and do this and do that. Most of the time I want them to just shut up. It’s easy to give talks and lectures, but it is not easy to actually do what they say.

But Karan is my sweetiepie…the apple of my eye. He is so loving…so loving. The thing that amazes me is that Karan does not understand how to hate or to dislike anyone. He’s always smiling, trying to hug you or kiss you. It always amazes how he never gets angry with anyone. How we get angry with people, suddenly hold grudges. People with autism are so loving; Karan is a sweetheart. I’m thankful he is who is. He is my blessing. Because he is never going to lie to me, he’s never going to hate me, he will never break my heart. He is what he is…he will never be two-faced. Other parents have so much else to be worried about with “normal” teenagers, none of which I have to contend with.

You know, he loves it when I tell him he’s a handsome boy. A “normal” 15-year-old would probably cringe at his mother being so affectionate. But my son will always love me and want to be close to me. We will never grow apart.

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Italicized open letter courtesy Autism Understanding and Acceptance

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.