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.

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).

How we buy clothes for Mr. D

We don’t know if Karan understands or appreciates the clothes Mom and I buy for him, but we certainly enjoy it. As you can see, we found a t-shirt that said “Mr. D” on it and I knew then we simply had to buy it:

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I’ve transferred my love for buying t-shirts with phrases on them to when I buy Karan’s clothes. I don’t think we’ve bought anything for him (t-shirts i.e.) that are plain blocks of colour. There’s always something happening on his t-shirts…a graphic, a phrase, a combination of both! Like these t-shirts:

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There are a couple of restrictions though, as Karan has a couple of requirements for his comfort. The fabric should not itch him, especially around the neck, otherwise he starts scratching himself, so cotton is a good choice. In addition, we don’t buy shirts for him. It’s not easy for him to button things up and we just feel he’s more comfortable in tees…and we’re worried he’ll nibble the buttons off! The only shirt he owns:

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With regard to trousers, he doesn’t have any jeans. They don’t allow him the mobility trackpants do, and again, it’s simpler for him to pull the trackpants up than wearing jeans, zipping it and then buttoning it up.

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He doesn’t wear caps because he doesn’t like anything or anyone touching his head. Lately however, we’ve trialled putting caps on and seeing how long it takes before he whips it off and throws it across the room.

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Shoes are another consideration. His fine motor abilities, while improved over the years, are not that developed for him to be able to tie shoelaces. Velcro shoes work best. I must tell you though, it’s quite hard for us to find adult shoes that have velcro on them! But when we eventually do, we snap them up! So he wears sports shoes or sandals with velcro, which are easier for him to wear.

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Clothes shopping for him is not without limitations, but even within that, I think he looks rather smart, doesn’t he? 🙂

In the front seat

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Mom sent me this picture today. It’s showing Karan sitting in the front passenger seat of Mom’s car. If you look at the background of the photograph, there’s a clothes-stand in the backseat, which meant Karan would’ve been extremely uncomfortable sitting at the back. He normally doesn’t sit in the front because…well, he gets excited because it’s new for him (we’ve done trials in our quiet neighbourhood), and loves stuffing his face near the AC vents and we’re just afraid he might get upset and grab Mom while she’s driving on Emirates Road (she has to drive from one end of Dubai to Sharjah to take him to school and back).

But this day, she had no choice.

And this is him after they arrived home. He apparently sat all the way really happily, staring out the window and did nothing untoward. Fingers crossed he’ll keep this up. It’s a real milestone for us, that he sat from Sharjah to Dubai, on a journey that takes a minimum of 45 minutes (if there’s traffic at the National Paints roundabout, all bets are off…it could even take up to 3 hours). The only “problem” was that he got annoyed that the sun was bearing down on his hands. In the back seat, he doesn’t have to deal with any sunlight and sits happily in the shade. What a princess! 😀

So here is our darling Karan, in all his glory, in the front seat of our car.

Congrats sweetheart!

The One with the Road Trip: Karan’s Big Adventure Part 3

Guest post by Adita Divecha, Karan’s mother

Note: If you haven’t already, read The One with the Flight (Part 1) and The One where Karan Goes to a Dentist and Pets a Dog (Part 2)

My husband, Rajiv, had to go to Pune for some work and he suggested that we go along with him. It was to be a day trip. We would go in the morning and come back by evening. Pune (it used to be called Poona earlier) is about four hours by road from Mumbai because of the new express highway which links the two cities. It used to take much longer earlier. Of course this highway has been there for quite a many years but is new to me as I have not been to India for the past eight years.

Anyway, we left early in the morning at 7.30am with Madhavi (Rajiv’s sister), at the wheel. Rajiv was sitting in front and Karan and myself at the back in the car. Karan is used to sitting in a car for long periods as he commutes daily to school in Sharjah from our house in Dubai. So he was very happy, looking out of the window taking in all the scenery. There was a little traffic on the way but not too much and once we were out of Mumbai, it was smooth sailing. We stopped on the way at a McDonalds outlet and Rajiv took Karan to the toilet. Then a little ahead we stopped again at a rest stop (in a small town called Khopoli, i think) and had breakfast. Karan did not want to eat anything there…He had already had his breakfast before leaving home. He ate a few of the biscuits he likes later in the car.

We reached Pune by 12pm and Rajiv met the person he was to meet and finished his work. Again, as Karan needed to go to the toilet we went to the Poona Club where he would be comfortable. Then we went to my cousin sister Padma’s place as she had invited us for lunch. Karan enjoyed himself there as he got to lie down on the sofa in peace (one of his favourite activities…hahaha) and he got his favourite chicken biryani for lunch. Later he had mangoes for dessert. So he was in a very good mood.

We left Pune around 4.30pm after a really great lunch and tea and having a really good time with Padma, chatting about so many things. Karan also was fine on the way but a little whining had started. So I made him listen to his favourite songs on my phone and he calmed down. The whole journey was uneventful but once we entered Mumbai, the traffic jams started. Due to the traffic jam and the incessant honking of the cars, Karan started getting upset and started crying. We had to stop on the way at a hotel so that he could be taken to the toilet. He seemed to feel a little better after that but as he was still whining, the music had to be played again so that he calmed down. We reached home finally at about 9pm after which he had his dinner. Karan went off to sleep very quickly as he was exhausted after his trip.

All in all, it was a very good experience for Karan and he sailed through with flying colours