Monthly Archives: April 2011

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