Mission: Two weeks without Mom

Not many people understood. “I’m taking two weeks off from work in December,” I said. “Oh where are you going?” they asked. “Nowhere,” I replied. I was staying in Dubai and planned to spend these two weeks off looking after Karan while my parents went to India. It was hard as it was to get my Mom on the plane to be honest. “I’ll be more stressed out leaving you two!” she said to me. Go, I told her. I kept forcing her. Telling her that once she went, she’d have so much fun she’d want to leave us all the time.

Bear in mind my brother was born in February 1996, and this was the first time in nearly 16 years she has left him alone for more than a few hours. Nearly 16 years without a break. Let that sink in your brain before we move on.

She pleaded me not to tweet/blog about her trip while she was gone (because she didn’t want anyone to know it was just Karan and myself at home). So I didn’t. But I recorded my experience during those two weeks and now that she’s back, I’m going to post them as my insight into trying to truly be Karan’s primary caregiver, house-runner and general all-round superwoman (that’s her, not me…I was just trying!).

Allonsy!

Participate in a special Sports Carnival + the #manzilbooks update

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That’s just a small fraction of the books that was loaded into the bus that came to pick it all up a few days ago. I want to thank everyone who donated their books to raise money for Manzil. I had nearly 2,000 in my house, and my father for one, is extremely happy that his storage room is empty now so he can stuff his things back in! I also picked up the books from Wild Peeta; a very big thank you again to them for letting me fill their shelves with the books we were collecting (I’m going to still collect until January, so please keep donating!).

Okay, so when IS the booksale? Many people have been asking me and I’ve been quite puzzled about it myself. After loads of delays, I’ve been told the plan is to hold it during the school’s Sports Carnival. I’m attaching the information given to me about the event here, sent to my by email:

Our theme for this year is “Together We Can”. To promote the same, we are organizing a Sports Carnival on Saturday 28th January 2012, from 10.00 am to 5.00pm, at the Khalifa University, Sharjah.

We are inviting mainstream and special needs schools from the U.A.E to participate in various activities. There will also be different kinds of stalls and games. The stalls are sold for minimum amount of AED 300. This is in the form of a donation. You may choose to pay more.

Please come forward to be part of our team to show the society that you care. Entries for participation will be received on or before Thursday 22nd December 2011.

And the formal letter that invites participation from members of the public:

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Download this file

Please spread the word to anyone whom you think might want a stall at the event! Thank you 🙂

Special needs children enjoy camping in Fujairah (via Gulf News)

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The first time we stayed away from home, the first time we travelled far with our friends and the first time we used a sleeping bag. How many of us will remember these experiences?

These and many more experiences were felt during Manzil’s overnight camp at Ain Al Madhab Gardens in Fujairah. What made this camp different was that students from Manzil, a centre for individuals with special needs in Sharjah, were accompanied by their “buddies” from The Millennium School, Dubai, where they attend a partial inclusion programme every Wednesday.

All students, escorted by the staff , filed into vans one Thursday afternoon and soon reached the camp site. After putting away their baggage, the students enjoyed a game of football. They then went and explored the play equipment in the park. Later, it was time for drumming, music and some dancing.

In the evening, there was a barbeque and all the students sat down for dinner and watched a movie. By 10pm all Manzil students were fast asleep.

The next morning, after freshening up, the students had breakfast and by 9.30am they were headed back to school where their eager parents were waiting to take them home. The parents were surprised to hear about all their activities. The students had even packed up all their things independently.

It was a wonderful experience for these truly special students.

— The writer is an Inclusion Programme Coordinator at Manzil

 

Late night thoughts on autism

One night, I don’t know what came over me. I sat and tweeted everything in my mind at that moment that had to do with autism and my brother. My brother is nearly 16, and we’ve been living with autism since he was about 3. Thirteen years and I still haven’t figured everything out…everything there is to know about autism.

The people who support me and my family, you’re absolute darlings. Thank you.

I’m also on a quest to find special needs/autism bloggers in the UAE and Middle East. If anyone knows or hears of anyone, please buzz me 🙂

Also…Happy Birthday Mom! Karan would’ve been nowhere without everything you do for him, and you know it!

So…for a recap on my late-night thoughts, here: 

View the story “Talking about autism” on Storify]

A fun workshop with @startworld at Park Hyatt, Dubai

Karan has been going to START’s art workshops for a while now, and when we were told there was going to be one workshop held at Park Hyatt one weekend, we stuck our names down for it. It was the Eid weekend, and since I was free I decided to go with Karan (the usual workshops are on Tuesday’s in the evening when I’m at work).

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Zara Mahmood howing us what to do

It was a whole lot of fun, with the kids (mixed, this one. That is, both special needs kids and the neuro-typical ones [NTs]) working with roller brushes, paint, glue, cardboard and paper.

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Brushes, glue and paint!

And boy did we get messy!

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We had to cut patterns out with cardboard, stick them on a bigger piece of cardboard, then paint all over it with the roller brushes and then put a paper on top to make a patterned painting. I made the patterns, Karan did the sticking and painting.
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…except for this time when he decided he wanted to cut a bit and took the scissors from me!

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That’s MY messy hand!

First up, I made a face, but since I let the paper stick on the cardboard for too long, it tore a bit and ended up looking like a skull more than anything else, haha.

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Stages of the first painting

Next was a house, then a car, and then Karan’s handprint! Check them out:

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Thanks to START and Park Hyatt for a great morning out, and Zara Mahmood for working with the kids 🙂

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Getting an Emirates ID card for someone with special needs

Guest post by Adita Divecha, Karan’s mother

Last year, we (Karan, Devina and myself) went to get our Emirates ID cards done, but later on found out that since Karan was only 14 then, he did not require a card to be made.

So it was his turn this year, since he’d turned 15, to get the Emirates ID card. This time, Karan, his father (Rajiv) and myself went to the Emirates ID centre in Barsha.

When we went in, he was quiet, but started getting fidgety and making a few noises when he saw the crowd standing in a long line (most kids with autism don’t like crowded places). As I did last year, I spoke to the lady up front and asked if they could help us somehow because there was no way he would stand for too long without getting upset.

She sent us straight in to the supervisor, where they took all the details from Rajiv, while I sat with Karan. They were really nice about having to see us quickly, which was very helpful.

We had to get his photo taken there, so he sat in the chair, but when we asked him to look up, he ended up looking at the ceiling and closing his eyes. After multiple tries, he stared at the camera, but with one eye closed. After a few more tries, he looked straight with both his eyes open and they clicked immediately. But they ended up using the photograph we’d provided; I don’t think he looked at the camera as straight as he should have.

Next: fingerprinting. The person taking the fingerprints was there the last time we came and even though a year has passed, he remembered us! He asked if we’d come before to make sure.

First he held Karan’s right hand, while I spoke to him to keep him calm, and started rolling a finger from one side to the other (they have to take the prints of the finger in a sort of 360-degree way). Karan allowed him to do that for just three fingers before he decided he didn’t want to do this anymore. He refused to let anyone touch his hands.

Then, Rajiv, the fingerprinting man and the supervisor had to hold him, but Karan is quite strong and kept pushing. He did this without crying or showing he was angry. It’s funny, in retrospect, to see a 15-year-old boy nearly pushing three grown men away.

I was standing behind him, patting his back and reassuring him that everything was okay. Eventually, we finished all the fingers on the right hand, and had to move on to the palm. He did put his palm on the printing device but didn’t want to press it hard, so we had to apply the pressure for him.

It was with a lot of difficulty that we finished, but it was done! But then we still had the left hand to do as well.

Nothing doing, indicated Karan.

He stood up once he realized we had to move on to the other hand, pushed everyone away and refused to go near the chair again. Nothing would convince him to go back. Finally, they said it was okay. They said because he had autism and that was causing him to be uncomfortable with the procedure, they’d put in a special note for his application saying that because he wasn’t happy going through the necessary process, they’ve just taken one hand’s prints and that would suffice.

Even though Karan didn’t really cry through the entire time we were there, I could see the relief on his face when he figured out we were done.

As usual, we had people (those waiting in the centre for their applications) staring at Karan like he was some kind of pariah, I guess because he was rocking a bit now-and-then and making loud noises. Doesn’t matter so much but you’d think there would be more educated people in society nowadays. Pity.

But the staff at the centre were really helpful. Extremely understanding about it, and we had a very good experience with getting the card sorted with the least possible fuss. I can’t be thankful enough about that.

Our first @UAEArte

I was nervous. This was the first time I’d be placing Artism in the limelight, the first time I’d be seeing whether Karan’s work would be received well by the general public. I’m happy to say it went well and I’m looking forward to the next Ramadan market by ARTE on August 26, 2011 at Dubai Festival City, from 6-11pm.

It started out well, I got there at 5pm to set up and landed a sweet spot near the parking entrance, which meant loads of people saw my table first. Properly set up by about 5:30pm, people slowly started stopping at the table and having a look.

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Many stopped by, commented on what was on offer, picked up the leaflet I’d printed out (which explained more about Artism) and almost all had something to tell me. To say I was overwhelmed by the encouragement would be accurate.

Karan stopped by too, with my parents. He sat at the table for a bit, then got excited (not sure why) and got a hold of one of his creations and energetically snapped it. Then began the rummage to find the beads that had exploded all over the place. He’s been told he’s going to have to make it again!

But the night went very well. We sold about 60% of the stock we had, with people asking if we took orders, which is great! Hope to see more people at the next one.

For the full set of photographs, check them out here.

Check out the snazzy slideshow of his work that was on display:

Tweets from the night:

View “Artism at ARTE” on Storify

 

If my brother didn’t have autism…

Inspired by this fantastic post from Love That Max.

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“If I didn’t tell you, would you even know my brother has autism?”

If my brother didn’t have autism, I wouldn’t know as much as I do about various medicines, various therapies and feel like an expert in anything autism-related. As Ellen mentioned in her blog post, we’re all ready to open our own practices!

If my brother didn’t have autism, I wouldn’t have realized that something like drinking water from a glass is a milestone achievement. It’s when the kids achieve small things that everyone else takes for granted, that we appreciate it so much more. From being able to use a spoon, to drinking water, from being able to wear his socks on his own to understanding he’s not supposed to spit all over my photo frames (he still does this to annoy me, then looks at me from the corner of his eye and laughs at me as I come over, oh-so-angry) … we celebrate everything he does. No achievement is too small. It’s all AWESOME. He’s recently done something many children figure out before they are 4 or 5, and we are SO ecstatic. So ecstatic that we haven’t told anyone yet because we want to hug it to ourselves, be sure it’s here to stay before screaming it from the rooftops.

If my brother didn’t have autism, I would be so, so, so much more selfish than I already am. We’re all vain and selfish creatures – well most of us are (My Mom isn’t – hey Mom if you’re reading this, can we extend my curfew past midnight in lieu of the lavish praise? No? Okay.). And I’m quite honestly admitting I was, and sometimes am, a very selfish person and look out for myself. My brother’s autism has made me change my perspective about a few things, with me being less shallow than I could have been. 

If my brother didn’t have autism, I’d be more helpless than I am now. Unsure how to get things done.

If my brother didn’t have autism, I wouldn’t have realized what a wonderful world is out there, filled with families devoted to their children. I would never have realized how important it is to have passion in a family. I wouldn’t have felt this sense of community I do feel when I meet families with special needs.

If my brother didn’t have autism, I wouldn’t have had the courage to shout at truck drivers. True story.

If my brother didn’t have autism, I don’t think I would have loved him as much as I do now. We would’ve been the typical family, where I would bat him off for entering my room (now I always want him with me), where I would not have so many pics of him and me around, where I’d tell on him to my Mom for something he did. Oh wait, I still do the last thing 😉

If my brother didn’t have autism, I wouldn’t know what unconditional love means.

If my brother didn’t have autism, I wouldn’t have the a sense of empathy for other families who deal with special needs. Before we knew what autism was, I always had sympathy. Now I have none. I only have empathy. Because one thing I’ve realized families with special needs HATE… it’s sympathy and pity. Save it for yourselves. We just want to be understood.

If my brother didn’t have autism, I wouldn’t know who my real friends and supporters are. He helps weed out the trash from the gems. He helps keep the backward, mentally stunted (attitude-wise) and disgusting people away. I have real treasures with me because of him.

If my brother didn’t have autism, he wouldn’t be who he is – an amazing person who is smart and has a pretty decent sense of humour.

If my brother didn’t have autism, my life would never be same. He made me who I am, and for that I will always be grateful.