The #manzilbooks update

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Bookmarks designed by Saurabh Chhabra (@2S8)

What’s happening with ManzilBooks? For those joining in now, here’s my plea to the community asking to donate books, and here’s the first #manzilbooks event we held at Wild Peeta.

Initially, the school wanted to hold their booksale in June, but haven’t hit the required 10,000 books the people helping them organise the event have requested for the sale to be held in the first place.

Where have they reached? With our donations and independent ones, they’ve passed 4,000. For this reason, they’ve decided to extend the duration of collection over the summer, and hopefully hit the target and carry out the event after the summer, and after Eid.

So…what’s happening?

I’m the contact person for pick-up points near Dubai Media City, Dubai Internet City, Emirates Hills, Greens, Meadows, Springs, Lakes, JLT, JBR, the Marina. Anastasia (@TDAllonsy) will be looking after Dubai Silcon Oasis, Dubai International Academic City (DIAC) and the surrounding areas.

Alternatively, Wild Peeta has generously donated its Dubai World Trade Centre outlet as a drop-off point. If dropping the books off there is more convenient, then please do so. Do drop me an email (autism [at] devinadivecha [dot] com) to let me know you’ve done so. There’s a collection of books people have dropped off along with these lovely bookmarks for people to have a sit-down and read while they eat (make sure you don’t drop any food or drink on the books!).

We hope you’ll spread the word…if anyone is thinking of getting rid of their books, please point them our way!

Manzil’s annual concert – “I Can”

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(First picture in the slideshow was taken at the dress rehearsal a few days before the concert by @SaharLatheef. I don’t have very many pictures from the concert – I’d left my camera with my parents while I helped @shru_ the best I could with the video she was taking of the event.)

As always, Karan’s school hosts a concert for its students to participate in. I’d missed last year’s concert because I was away in UK, so I was quite excited about this year’s. It was held at the Sharjah Cultural Palace and this year was called “I Can”.

The event started off as always with a slideshow of all the students photographs, then the UAE national anthem and the Surah recitation by one of the students. After a singing performance by the students and the Best Buddies from Millennium School, Sharjah, there was a dance performance called Fire and Water. We saw two students graduating from the school this year, much to everyone’s applause and encouragement. Then we had the musical play, I Can, which was an adaptation of Helen Keller’s life. The concert ended as always, with a vote of thanks.

I always love going to these events … whether it’s their concert or their sports days (which I’ve said before). Even if you’re going through a particularly bad patch, attending these events never fails to lift spirits. It works for me anyway. You can go in feeling really bad about something, and walk out feeling on top of the world. Just seeing the student’s enthusiasm, hard work and effort paying off is such a lovely thing. You see the students really giving their all to put on an awesome show for their families and you see how much they’ve progressed since joining the school. The atmosphere is even more charged because of the expectations and hopes the audience has; it seems like such a normal thing…to perform at an event, doesn’t it? Preps for these concerts are even more than what other “normal” schools would go through. The students are given roles according to their ability and are trained to do it well. Karan had to walk in and then go to the fringe of the stage – he was playing a mountain hehe.

Can’t wait for their next event; one of the most exhilarating experiences I have every year.

At #manzilbooks at @wildpeeta

First, have a look at the lovely timelapse video that Shruti (aka @shru_) created. Then we’ll get on to the other stuff!

Along with @TwitBookClub, I hosted a event at Wild Peeta OS at DWTC (thanks @wildpeeta!), asking people to donate their unwanted books. Manzil, a centre for challenged individuals, is a small institution doing a lot of work for people with special needs and they’re hoping to host a fundraiser soon where they will sell all the books they have collected.

We’re still collecting books for them, so please get in touch with myself (@DevinaDivecha) or Anastasia (@TDAllonsy) or email me at autism at devinadivecha dot com and we can arrange to pick up the books from you. They were initially hoping to host the event in June, but frankly, it’s mostly been our efforts through Twitter that have seen results, so they don’t have very many books yet to justify hosting an all-day fundraising event, so the date has been pushed back. So I urge you to please help with this…spread the word…that’s all I ask.

A BIG thank you to everyone who showed up (we collected 102 books that day!), and I hope you can pass this info along so the school benefits from whatever contribution people have to make.

To round it off, here’s a look at some pics from the event, where we’re mostly just having a laugh:

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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.

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!