I can't remember how old I was. I think I was 13 or 14. So it wasn't very long after Karan received his autism diagnosis.

The semblance of "normal life" was slowly slipping away from our family. We'd stopped doing random things we used to do together. Gone were trips to the cinema, gone were long drives, and something that completely shattered our going out to restaurants happened.

One night, we'd decided to go out for a meal. We went to an Indian, vegetarian restaurant in Dubai, that we used to frequent a lot many years ago. Karan was still 4 or 5 at this time.

We sat down to eat, placed our order. Karan started whining a little bit; we realized eventually it was the noise in the restaurant bothering him. He kept crying for a bit, as we tried to calm him down. It didn't work immediately; his diagnosis was new enough that we were still at a learning curve, still working out how to handle him.

After a lot of stares, mutterings and pointed glares, the restaurant manager came over to our table.

We pretty much got kicked out of the restaurant.

Apparently the other diners complained about my brother and the nuisance he was causing, and the manager said it was better we left. When we tried to protest and explain the situation ("this child has special needs" etc), we heard a rather loud: "Why don't they keep their retarded children at home?" comment.

We left.

I think it scarred us for life. We tried going to another restaurant weeks later, but as soon as Karan kicked up a fuss, we upped and left. Perhaps my parents didn't want a repeat getting-thrown-out scenario. We've never really gone to a restaurant since. Food courts yes (let's face it, even if Karan screams like a banshee, no one's going to hear him there), restaurants no.

I accept it wasn't completely the manager's fault; I imagine the diners were having a go at him and upset about their meal being "spoiled" by the crying child. But there was clearly no policy on dealing with situations like this. Yes, it was a nascent time then for special needs, but oh lord, how it hurt. How it hurt.

I don't blame my parents for leaving. But I now realize that had I been older and in a position to make the decision, I would not have left. My mother and I have realized (in hindsight), that there's no point in tucking our tails between our legs and running. It's important to stand and fight.

You might say, surely we have a responsibility to not bother other people.

Well, I'm SORRY if my brother's autism bothers you, but frankly, I'm just going to tell you to get stuffed. Who the hell are you to tell me that you're entitled to enjoy a meal with your family at a nice place, and I am not? My brother is not?

Now you'll say, well he was crying anyway so he clearly wasn't enjoying it. No, he wasn't. I agree. My point is, with autism, he needs to be exposed to "normal" things that everyone else is. I want him to go out, I want him to experience what everyone else does. By shutting ourselves at home, we're just segregating ourselves more than YOU are already doing with your behaviour towards us.

So yes, I will take Karan to restaurants and places where he may cry or kick up a fuss. I will stay as long as I can with him to acclimatise him to the surroundings because it is important to him, and to us. For example, I took him to Chili's on his birthday a few years ago; we got him molten chocolate cake to celebrate (he loved the cake there FYI). He did make a little noise (happy noises to be fair!) and kept trying to bang the cutlery on the table, but if anyone looked at us oddly, I glared back. It's my thing.

I dare you to tell me to leave. I'm older, bigger and frankly, have had it with your shit.

Oh and that restaurant that told us they'd rather we left before they evicted us? We never frequented it again.

Cross-posted on FooDee

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.

If you're reading this blog, you'll know my now 15-year-old brother has autism. He is a smart, funny and cute boy, who just happens to not be able to do things other "normal" 15-year-old's can do. He is currently non-verbal in that he cannot talk to communicate his needs. There are many things he will not be able to do that everyone else takes for granted throughout their lives.

However, we are now launching something for him and by him. What is it?

Karan's school has this program to get its students to become self-sufficient in something they could potentially make their livelihood. While some students are capable of doing admin work, like filing, photocopying and entering data into forms and things like that which could get them jobs in offices/hotels/banks, Karan isn't up to that level. His work will mostly be of the artisan kind, and right now he's doing very well in two things: painting and jewellery-making.

Right now, we've started off with making jewellery. I've had the very experienced Debbie (@GeordieArmani) have a look at initial pieces and she's been very helpful with suggestions on how to improve and moving forward.

I'll be putting up some pics of stuff he's done, and will create a Facebook page soon to get more people interested in the know, and will hopefully be present at future ARTE (Artisans of the Emirates) events.

Today, I present to you: Artism.

Update: here's a link to the Facebook page!

July 28, 2011, a Thursday evening saw myself, Mom and Karan heading down to Farjam Collection gallery at DIFC. Karan was at the START art camp, and the gallery was hosting an exhibition of all the work the kids had done. Alongside the works of the START kids, were the paintings of children who had attended the Art camp as well.

Here's a look at Karan's work that was on exhibit; he also did the painting splotches in the lower right hand corner in the fifth pic in this gallery.

My sweetheart brother next to his painting.

Some of the other things at the gallery that caught my eye:

Karan, Mom and Nicola, who organizes the art events for the START kids.

Karan says...see you again!

The Walk for Autism took place at Za'abeel Park yesterday, April 30, 2011. Registrations opened at 4pm and the walk was meant to start at 5pm; Mom, Karan and I got there around 4:50pm because we knew that if Karan was made to wait around for too long, he'd get irritated. We registered and got our hands stamped so we could enter the park without paying the customary Dhs5 entry fee.

Then we faffed around with a few pics and clicks:

It was a few minutes past 5pm and we figured we should take Karan to the toilet. The perennial problem of disabled toilets being *inside* the male/female enclosure arose (for more backstory, read: Are Dubai toilets special-needs friendly? Not very.) but I walked into the female toilet, cleared my throat and told the women inside that my brother has autism and he cannot go to the toilet alone, so could I bring him in? Everyone said, yes of course and I quickly took him in.

When I came out, the walk had just started!

The walk is usually quite short. So we took two rounds instead of just the one. There were many people there, families, individuals, companies even. My placard got quite a bit of attention. I was asked about 4-5 times if I would allow a photograph taken of me and Karan together; I said yes. Video cameras also joined in; I was followed for a good few seconds by at least two videographers. Yay, more awareness!

After the walk, the base of the amphitheatre-like area was filled with stalls, and Dubai Drums was putting on a performance.

Karan was thirsty, natch :)

And we found Karan's school, Manzil (for whom I might add, we're collecting books next weekend, to donate to them for their fundraising booksale) had a stand at the walk too! 

When we were leaving, Karan decided to plop down near the fountain and take a good and long look!

Thanks to all the organizers of the event, to the people who put up stalls and to everyone to attended. A lovely evening.

The second session was at the Raffles Hotel near Wafi. 

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

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.

 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. 

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!

Have a look at this first, then read on:

Whenever we go out, and Karan needs to use the bathroom, it's often a problem because it's almost always just me and Mom with him. He can't go to a public toilet alone and needs someone with him. Now we can't enter the male toilets obviously. That leaves the female toilets. The problem is getting a 15-year-old, almost 6-feet tall male in there. Mostly we rely on the kindnessand understanding of the women inside who say it's okay to bring him in. However, going out does provide unnecessary complications when it comes to using the toilet.

I still remember this one time when we were in Deira City Centre a few years ago; we were near the cinemas when he wanted to use the toilet. We poked our head into the female toilet and saw a group of abaya-clad women there. We were a bit shy/hesitant to ask them if it was okay to bring Karan in because we felt perhaps they wouldn't really be comfortable with the idea. Believe me, they were one of the most understanding and kind people we've met. Far from having a problem, they insisted we bring him in immediately, asked us more about him and even greeted him when he came in, even though he didn't give any sign of noticing them.

Anyway, I went to Dubai Mall with my Mom and Karan, and he needed to go to the bathroom. So, we poked our head into the female restroom and saw that the handicapped/disabled stall was right the edge, which was a relief because it meant we didn't have to go all the way in and would not encounter many women who may or may not have a problem with a 6-foot-tall man in front of them, no matter how innocent. Anyway... there was no one else in the restroom save an attendant and two women sitting on the bench that was at the entrance of the restroom. We walked in, and the attendant piped up...

Her: Ehh...no no no...what is this?
Me: Oh hello. Sorry but my brother has special needs and I need to take him to the toilet.
Her: No, no, take him out.
Me: He has autism and he cannot go to the toilet alone and he needs someone with him, so I need to take him into the handicapped stall.
Her: No, no NO! He go to male toilet.
Me: I cannot enter the male toilet and he needs someone to go with him. He has autism...special needs? He cannot go alone.
Her: No, take him out.
Me: *trying to stop my mother from an all-out battle* Look, I don't care what you think, I'm going into the toilet with him, because he can't go alone and like I said, he has autism and one of us HAS to go in with him.
Her: No...I...he cannot...
Me: Fine, call the management and I'll talk to them.
Her: *silence* Okay, but go quickly.

Quickly????? I didn't even bother thanking her for grudgingly letting us go in and took him in. Do I even want to go back to Dubai Mall again with my brother? No.

Public places like malls and parks need to realize that a massive special needs population exists in this city, and in the country. We're here and we're here to stay. They also need to realize that some children and adults with special needs have a caretaker/guardian of the opposite gender. If they need to go to the toilet, how can they go if it's either male or female??? I implore the management of such places to think about us, because as it is we're thrown at the fringe of society and this is just another thing that makes us dread going out. If your intention is to keep us shut behind four walls, congratulations, it's working. It is absolutely imperative to have disabled toilets that are really independent of the male and female toilets. If you want to guard against anyone and everyone using the toilet, have an attendant in each bathroom have a key or something, and give it only to those who really need a unisex washroom (for example, someone who has a special needs issue whether physical or mental, and their opposite gender guardian). Knowledge Village has unisex handicapped toilets near the male/female ones, why can't everyone else?

We get well-meaning people (but those who don't know what they're talking about) to "take Karan outside". Yes, we'll take him. But how do we integrate into society if we're denied the basic right of using a toilet? 

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.

One of the problems I face is that Karan does not like to open his mouth when you ask him to. This was quite a problem when his milk teeth were falling - some have still not fallen. When he feels the tooth is loose, he tries to pull it off with his fingers and keeps on fiddling with it. He makes his face, clothes, the sofa and the bedsheets all bloody. He does not allow me to check his mouth and holds it tightly shut. And he does not cry.

Sometimes he has put pencils or crayons in his mouth and its quite difficult to take them out. I have been bitten a few times while trying to take things out of his mouth. Right now, he is getting a new molar but the old one has not yet fallen. He was biting down on the right side of his mouth and grimacing so I thought he had hurt himself there or perhaps had a blister. After coaxing him for many days to open his mouth slightly wider, I have found that he is getting a new tooth except it is coming out in his palate on the right side next to the molar which has not yet fallen.

Something will have to be done to ease his discomfort. He is of course not going to sit in a dentist's clinic and open his mouth to let the dentist check and do something about it. I have been told that children like Karan are usually taken to a hospital. Their teeth are checked and x-rayed and then worked on usually under anaesthesia as they refuse to sit in the chair, open their mouths and keep it open for the dentist to work on. I am sure that other kids also don't like going to the dentist but with special kids like Karan it is difficult and different.