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

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I have not been able to put down my thoughts for a long time now. Don't know why. Something always came up, or my thoughts were always muddled, or I was just being plain lazy. My daughter Devina is always encouraging me to write more and I keep on procrastinating. So anyway here I am trying to say things which I hope make sense.

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I posted about this last year too.

I'm ashamed to say I'd nearly given up since then. I know people, on more than just an acquaintance level, who say "retard" all the time. I tried with a few, but they just don't change. They promise they won't say it, but then they do. I feel embarrassed that I've given up because every time they say the word, I cringe. I cringe and I don't understand why they use it. I cringe and hate myself because I feel like I'm letting Karan down by keeping quiet.

I said a lot last year about how it hurts. But this video from Love That Max says a lot more. I did shed a few tears when I saw this, because instead of Max, I kept seeing my brother, Karan.

Here's to me not keeping quiet any longer.

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I came across this link on Twitter, have a look. Some things said in this video:

"I've seen Rain Man."

"You're autistic? I'm so sorry."

"Oh I've read Temple Grandin's book. Do you like cows?"

"What are you...retarded?"

"I like autistic people as much as I like real people."

What does everyone else think? 

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As I sat in the plush chair in a salon in Bombay a few days ago, I nearly started crying. No, the heat of the blow dryer wasn't too much, neither did the searing hot iron burn my scalp.

I was getting my hair done to attend a wedding function that night...and an idle mind can lead to many things. This post might surprise many, including my mother, who probably has no idea I think this way [Edit: I just showed my Mom the post before hitting publish and she surprised me telling me she knew I thought this way]. Writing is cathartic though, and here I am, to share my experience with others who may be in the same boat.

I'm, annoyingly enough, at that age where people are asking about when I'm getting married (in desi years, I believe I'm near the end of my shelf life hahaha). Luckily, my parents aren't too fussed about me tying the knot any time soon, so my Mom has been deflecting all attempts from well-meaning relatives to get me to see a boy. "No, she's too busy with her career, not now," my Mom says (I LOVE YOU MOM, YOU KNOW THAT?).

Anyway, as much as deflections are being made...I do think about the future. Who wouldn't? Sure, I'd like to get married someday, with someone whom I love and who loves me (therefore putting a spanner into a traditional "arranged marriage" concept for me). But there is a condition to it: he has to love and accept my brother too.

I've gone through enough recently and seen others go through the same...a situation where one is rejected (as a potential wife/daughter-in-law) due to the existence of a child with special needs in the family. So now I've kind of brainwashed myself to believe that, in general, most people are narrow-minded and as a result of this, it's highly unlikely I will ever find a man whom I can love and who will accept my brother, not just as a part of the family, but as someone whom I will be taking care of eventually. I think it's a defense mechanism I'm employing, to avoid being hurt again.

Apart from this, another thought entered my head as the stylist tonged my hair and curled my ends: what if I do find a man like this and end up getting married? Can you imagine the logistics?

My brother is not a high-functioning autistic. He cannot speak, he only babbles. We still have to give him a shower and clean him once he uses the toilet. While he has progressed a lot through the years, he is still in need of 24/7 vigilance. Anyway, weddings are noisy and long affairs...how on earth is he going to attend ceremonies like the sangeet for example (an event where people basically dance, eat and drink in celebration)? Will he be able to handle the noise? What about the people? The crowds? If he's even able to attend, what about my Mom? Can she really enjoy herself? What about looking after my brother? Will she be able to participate in the festivities?

All these thoughts kept repeating for each of the traditional ceremonies I'd expect to have if I was getting married. Before you say: don't have these ceremonies, let me tell you, I'm a bit traditional at heart. If I ever get married (note my defense mechanism of "if" - it's never "when"), I want the whole shebang. It doesn't have to be necessarily big in terms of number of people there, but big in terms of absolute fun.

I'm so paranoid, innit? If...if...if.

At this point...I open my eyes, see my hair falling down over perfect curls on my shoulder, blink my eyes to dry the tears away... and move on. I allowed myself my 10 minutes of wallowing, now I was done and ready to enjoy the night with full-blown enthusiasm (I did, in 3.8-inch postbox red heels at that). As the song goes...the future's not ours to see.

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I need to have a fangirl "SSQQQQQQQUUUUUUEEEEEEEEE!!!" at this point. Last night, while skimming my Twitter timeline, my eyes got stuck on a tweet that had the following words:

"Hey girl" ... "Ryan Gosling" and... "SPECIAL NEEDS"

*click click click*

WORK FASTER, INTERNET SPEEDS, DAMN IT!

I absolutely love it! Created by Sunday Stilwell, the mom behind the blog, Adventures in Extreme Parenthood, there are currently two blog posts I can find with this meme. These can be found here, and here.

I leave you with one image from her blog...one of my favourites. Please, please click on the links and read the rest...if you deal with special needs on a daily basis, you will identify with them. And looking at Ryan Gosling doesn't hurt either :)

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Warning: Long post ahead. Settle down with a cuppa if interested in autism and/or special needs.

Hark, I hear the Medieval Ages calling...okay, just the 1950s, and Dr Tony Humphreys is ushering it in.

First, read the following article which was printed in the Irish Examiner, which I stumbled across only yesterday:

 

by Tony Humphreys

Do not read this if you have had a difficult day/week!

Monday 6th Feb, 11.30 am. This article has still not appeared on the online version of the paper.

A team of researchers at Cambridge University is currently exploring the connection between high-achieving parents, such as engineers, scientists and computer programmers and the development of their children. Professor Simon Baron-Cohen, who is the director of the Autism Research Centre at the university, says there are indications that adults who have careers in areas of science and math are more likely to have autistic children.

In studies in 1997 and 2001 it was found that the children and grandchildren of engineers were more likely to be autistic and that mathematicians had higher rates of autism than other professions. What is shocking is that Dr Baron-Cohen and the team of researchers are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominanently in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.

After all, the deepest need of every child is to be unconditionally loved and the absence of it results in children shutting down emotionally themselves because to continue to spontaneously reach out for love would be far too painful. 

Children's wellbeing mostly depends on emotional security - a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism or ASD (autistic spectrum disorder) only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.

It is frequently the case that it is when these children go to school that their emotional and social withdrawal of eccentricities are noticed, mainly by teachers, who themselves can struggle with how best to respond to these children. An unconscious collusion can emerge between parents and teachers to have these children psychiatrically assessed so that the spotlight is put on the children and not their adult carers' own emotional and social struggles. Regretfully, the relationship contexts of the childrens' lives are not examined and their mature development is often sacrificed on the fires of the unresolved emotiuonal defences of those adults who are responsible for their care.

It is important to hold to the fact that these carers do not consciously block their children's wellbeing, but the unconscious hope of children is that other adults (teachers, relatives, educational psychologists, care workers) that when they are emotionally and socially troubled, it is their adult carers who often need more help than they do. 

Indeed, my experience in my own psychological practice is that when parents and teachers resolve their own fears and insecurities, children begin to express what they dare not express before their guardians resolved their own emotional turmoil.

A clear distinction needs to be made between the autism described by psychiatrist Leo Kanner in 1943 and the much more recently described ASD (autistic spectrum disorder, often referred to as Asperger's syndrome). The former 'condition' was an attempt to understand severely emotionally withdrawn children, the latter concept, which is being used in an alarmingly and rapidly increasing way, is an attempt to explain children's more moderate emotional and social difficulties. Curiously - and not at all explained by those health and educational professionals who believe that autism and ASD are genetic and/or neurobiological disorders - is the gender bias of being more diagnosed in boys (a ratio of four to one). This bias is also found with ADHD. Surely that gender phenomenon indicates the probability that boys are reared differently to girls and that due to social and cultural factors boys respond to the troubling behaviours of their adult carers in ways that are radically different to girls. 

What is equally distressing is that, as for ADHD, a whole industry involving research, assessment, screening, education and treatment has been developed, despite the absence of any scientific basis or test for either the originally 'detected' autism or for the broader construct of ASD.

Sami Timimi, a consultant child and adolescent psychiatrist and two colleagues rigorously examined over 5000 research articles on autism and ASD and found no scientific basis for what they now refer to as mythical disorders. They outline their findings in their book 'The Myth of Autism' (2011). The conclusion of their indepty studies is that "there is no such thing as autism and the label should be abolished".

The authors are not saying that the children are not emotionally and socially troubled. What they are saying is - and I concur with them - that focus needs to be on the relationship contexts of these children's livews, and to take each child for the individual he or she is and to examine closely the family and community narratives and discover creative possibilities for change and for more dynamic and hopeful stories to emerge for both the children and their carers.

Dr Tony Humphreys is a consultant clinical psychologist, author and national and international speaker. His book 'All About Children" is relevant to todays article. 

I quite honestly, wanted to curse out loud when I read this. You know what this guy is talking about??? He's essentially trying to eradicate all the progress the community has made towards understanding autism, it's going back to the dark ages, when doctors didn't know what autism was and decided, HEY LET'S BLAME THE WOMAN OF THE FAMILY!

Ever heard of Refrigerator Mom Theory? This was the theory floated around in the 1950s and 1960s that said autism was caused by detached mothers, those who could not emotionally bond with their kids. Often, when reading accounts from the past, you will find parents who say the wife was often blamed for the autism, saying it her coldness that caused the child to retreat within a shell.

This is one of the letters that appeared in the newspaper yesterday as part of the outrage sent in by readers:

‘Psychobabble’ has been discredited for decades

Tuesday, February 07, 2012

The article by Tony Humphreys claiming that autism is caused by "cold" or emotionally distant parents, displays such willful ignorance, lack of understanding and density of inaccurate and offensive statements that it is shocking that the Irish Examiner would publish it.

This kind of psycho-babble has been discredited for decades.

Autism is a biological, brain-based disorder. It is also a genetic disorder. The scientific evidence for these statements is overwhelming. We now know of more than 100 distinct genetic conditions that can result in autistic symptoms.

These conditions affect early development of the brain and researchers are making progress in understanding how that results in the specific symptoms seen in autism, which may range widely in severity.

In contrast, the claims by Mr Humphreys are a throwback to psycho-analytic theories that are completely unsupported by any evidence, as well as being actively damaging and hurtful.

In publishing this waffle, your paper does a disservice to responsible journalism and to all the patients, parents and teachers struggling to cope with the real disabilities caused by this condition.

Kevin Mitchell PhD
Associate professor of genetics and neuroscience,
Trinity College Dublin

 

This appeared in the printed version of the Irish Examiner Tuesday, February 07, 2012

Some other letters linked here: a letter from Kevin Whelan, chief executive at Irish Autism, who said: "What people with autism and their parents need is more research that specifically addresses how the condition occurs — not the defrosting of an assumption over half a century old"; then quite appallingly, a letter of support, from a music therapist no less! I can only imagine parents of children with autism who may be sending their kids to him, won't anymore. 

And then...a response from the newspaper: "Autism controversy - The right to an opinion".

I want to tear this apart, but it has already been done exceedingly well at The Voyage, I suggest you read it there.

I got in touch with Grace app creator, Lisa Maree Domican, who said one thing we can do is this:

If you want to write to the press council 

Press Council of Ireland
1,2 and 3 Westmoreland street, Dublin 2
Republic of Ireland.

info@presscouncil.ie

Also in her blog post, Lisa mentions a Twitter protest idea:

Join Twitter and use the hashtag #ilovemyautistic to refute the myths with examples from your own life
eg: "@lisamareedom: #ilovemyautistic son because he cracks me up! And laughing every day keeps me young"
you get the idea. Now go forth and counter!

I know this is a long post, and there's a lot to get through, but people who are supposedly doctors, and say things like this which can impact the autism community and set us back to where we emerged from, need to know they cannot say whatever they like with impunity, and get away with it.

I shall reiterate for anyone who's stuck reading this post so far: The refrigerator mom theory is bunkum. It's bogus, it's not real, it's absolute SHIT.

As a personal example: my brother was showered with all the love he could get...he had started talking even. He had his grandparents to spoil him silly, an elder sister who was uber-excited about being with a little baby, a Mom who loved her new child. He was a child brought up in love. He still has autism. After the diagnosis, he was showered with even more love, even though it doesn't seem possible we could've loved him any more. He still has autism.

So if anyone, anyone at all, whether he/she has a professional degree, tells you your child's autism is your fault, is because you didn't provide for him/her emotionally, I suggest you walk out of their office/clinic there and then, and name-and-shame them.

Don't blame yourself; you need to be strong to take care of your child, not beat yourself up over a baseless opinion.

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This post is to inform everyone the books we've been collecting for Manzil are finally going to be put on sale. It's also going to be combined with the school's Sports Carnival, which will take place on Saturday, February 11, 2012 at the Khalifa University, Sharjah.

Normally, these events are a bit low key, with just the parents and families involved. But this time, the Manzil Sports Day has evolved into the Sports Carnival.

Here's the event invite; do pop by!

If not to cheer the adorable students while they compete in various sports, but to buy some books and play some games? Come on, it'll be a fun day out. The event invite says 10am-5pm; from 10am-12pm are the sporting events and then onwards is the fun fair activities, including the booksale.

Anyone want to help them out? Read on, thanks!

Also, if anyone is interested in supporting the school, here's how you can do it:

1. The school is selling spaces/tables for firms and/or individuals with businesses who want to showcase their wares and sell their items on that day. Participation for this closes February 2, 2012. Do spread the word.
2. They need a photographer and a videographer from 10am-1pm that day. Anyone who's up for some pro bono work, drop me a line at contact(at)devinadivecha(dot)com.

Thanks again to everyone who supported the collection of books!

Previous posts you might want to read:
- Participate in a special Sports Carnival + #manzilbooks update
- The #manzilbooks update
- At #manzilbooks at @wildpeeta
- Donate books to help raise funds for a special needs school

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Read the past posts here:

• Mission: Two Weeks Without Mom
• The One Where The Autism Siblings Were Alone Together
• What I experienced with my autism sibling as his caregiver

Devina's Final Thoughts
I'm exhausted. And I'm only 24. Every day, mostly the only thought I had was: "I cannot wait to feel that soft bed underneath my body and rest." It's tiring. It's draining. And when you have no help, it's even worse. You're assaulted by feelings of not having enough time for anything other than your responsibility to your child and to your house. You end up feeling guilty for not having enough time. You feel alone. Sometimes you doze off on the sofa, or your eyes feel scratchy when you're driving on Emirates Road because the monotony of that route definitely doesn't help your sleepiness. But you do it anyway because you have to and nothing is too much for your child (in this case, my brother, but he feels like my baby most of the time!). It hits you that what you would've normally done only for a few years of your child's life, you will do forever. It's not exactly uplifting but when you sink into bed every day having gotten the job done, there's a sense of satisfaction and the hope that when you wake up the next day, you'll do it well, all over again. When you wake up, yeah you're worried today is the day you'll collapse and just not be able to do it anymore, but...you soldier on. Because this is your child. And if you don't support him/her and don't fight for him/her, then no one else will.

Adita's Experience
It was a nice change though in the beginning I was feeling very stressed and not getting sleep because I was constantly worrying about both my children. Then slowly I got used to it. Since every day I normally do things with and for Karan, throughout the trip I was feeling very empty, like I didn't have anything to do. I felt lost quite a bit because of that. Even towards the end of the trip, I wasn't getting sleep properly, not because I was worried but because I'm used to waking up all the time to check on Karan. It was nice to meet people and just go wherever I wanted without a second thought because otherwise I always have to think about what Karan will be happy with. So liberating in a way. Everything is always according to his routine, but here I was free to do as I wished. I was going out for movies, staying out for dinner with family and friends...but I think I'm so used to this life, I missed my routine too! After 16 years, because I've been doing everything according to him, even though I went out and did everything that is fun, I don't miss that sense of social life I think. I was sort of waiting to get back to my routine life. But it was definitely a nice change to get a few days off.

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First post: Mission: Two Weeks Without Mom
Second: The One Where the Autism Siblings Were Alone Together 

Same advice as last time...read in parts or keep 10-15 minutes aside. Or 20 if you read verrrry slowly.

The One Night Where Dee was Dancing
One evening, Karan decided he was going to cry his heart out. Now he has these rare moments where he cries properly with a quivering mouth, real tears and his ears go red. He started crying. For real. I freaked out, called Mom and asked her what could be wrong (he'd eaten, gone to the loo...everything). "Put on his favourite songs," she said. I paused Dollhouse, and looked and found a CD of...Dabangg. Yeah, really. And so that evening for one hour, if anyone looked through our windows, they would've seen me jiggling away to Munni Badnaam Hui. Seriously. I decided since he couldn't see Salman Khan and Malaika Arora Khan, by the billions of blistering barnacles, was I going to give him a show (to be clear, I was channeling Salman Khan in my moves)! I couldn't move him upstairs and play it on my laptop since it's generally a bad idea to try and bug him further than he already is at the moment. After a while, he calmed down and could be found rocking to the tunes of the song himself.

The One Where Dee Wakes up at 5:30am. Every Day.
When he finally got better, the week starting December 18 (a Sunday) was when I started sending him to school again. His school is in Sharjah, off the infamous National Paints roundabout. I live in "new" Dubai (Springs/Meadows). Yeah. That. Mom says she wakes up at 5:30am and advised me to do the same. I do. I wake up, brush and all the usual morning stuff before heading down to make Karan's snack for school. Right now he's in a pasta phase (apparently he's been refusing his sandwiches) so pasta it is. Every day. Fresh. Little bugger. Once the pasta is made, dishes are washed and all that, I wake him up. Brush his teeth. Give him breakfast. Get ready. Get him ready. Jet off between 7:30am-7:45am. On the third and fourth day of the week, my alarm fails me (read: it correctly follows my "snooze" button instructions) and I wake up only by 6:30am. I don't know how I manage but I do (in a rush) and leave by 7:45am or 7:50am max and make it in time for school (time = 8:30am). Then I wait till 1pm when I have to pick him up. Then drive back home and go back to work (feeding, cleaning, cooking, cleaning, dishwashing, clothes washing, vacuuming, bathing, feeding). 

And the dishes?! Where do all these dishes come from? There's just two of us, for crying out loud! I shudder to think of how many dishes there are when four of us are in the house. I'm very sporadic with my dish washing otherwise. To be fair we have a dishwasher, but for some reason, the day after my father left...it stopped working. Ummmm. Yeah, I didn't do ANYTHING. It stopped on its own on the day of the height of my flu situation. Poor, sick ol' me washed EVERYTHING.

The One Where Dee Feels Lonely
Wow. It's lonely here. You have no idea. I knew Mom felt alone but I experienced it first-hand now. It's insanely bad. There's nothing, you know? You wake up, take him to school, either finish grocery shopping or quickly have some breakfast while you wait, drive back home on the same, deserty stretch that is Emirates Road every day, cook, clean, wash, try and put your feet up for a little while and sleep. Rinse and repeat...forever. You feel so tired at the end of it, you don't feel like doing anything else. The thought of even blogging for me was repugnant during this time because I was just so bloody pooped. And I love to write; I make my living by writing, for heaven's sake! And to be honest, no one else was there. I don't know how to explain it...I was still tweeting for example, talking to friends/chatting...all that. But there's this sense of isolation that prevails when you take care of a child with special needs. Two friends visited me during the 16 days I was alone...one to bring me cake because I was having flu-cravings (she claims this does not exist...I do), and the other drove all the way from Deira to my place to pick up a very heavy water bottle to place on the water dispenser since my back issues prevent me from doing so myself (thanks Shruti and Ayub!). Every one else is busy...I don't blame them. People have lives to lead. But when you are caring for a special needs child, they lead their lives as it was with no thought for you (as it should be...no one else is responsible for you or your charge. Never expect. EVER.) and it just makes you feel more alone than before. Bear in mind most of my friends have cars and I would've liked some company sometimes... but you know. Shit happens.

The One Where Karan Goes Out
I was very conscious of the time that he was sick and I was sick that we didn't go out very much. As soon as we both were in varying stages of flu recovery, I tried taking him out. Once I ended up at a café on Sheikh Zayed Road with a few friends...he ate a bit from my plate and I left in time to get him home for his dinner. He was alright during that time...apart from wanting to grab the food off my plate without waiting for me to cut/scoop/feed. Impatient boy. Another time, in an impromptu fashion, I went to a tea joint near my house after a friend tweeted and said why not come over. I demurred at first...what if Karan didn't like it? Friend said come anyway. I was still divided. Called up Ayub and asked his opinion...he said gooo! I went for about 40 minutes. Karan was alright...didn't want to eat the cake I ordered though. He scratched the beejesus out of the rattan chair (he likes the texture) and eventually I left when I thought he was nearing the end of his tether. I'm glad I went both times though...my way of thinking is he needs to be exposed to different things and if people have a problem (ie other people at a public venue), then I am there to fight for his right to enjoy the same things they are. Innit?

The One Where We Eat Popcorn
Movies. I've talked before about how I want to get cinemas in theatres to have special needs showings like they do in UK and I haven't been able to follow up on this yet, but this is still something I want to work on and I think I'll have more time in the new year to do that. But till then, I brave the crowds and hope I find people in the theatre who will be understanding. But even so, why make it harder on myself? I pick an animation...Puss in Boots (or Cat in Boots as it's called on the posters in the UAE). I pick the first morning show on a Friday. As empty as it can be, the better. Still, there are about 6 people in there apart from us. Karan devours that popcorn bucket like a starving man (he wasn't Mom, I WAS FEEDING HIM I SWEAR!) and watches, closes his eyes, then watches again. Towards the end, he decided he was going to join Puss with the dialogues and went "Mmmmmmmmmmmmmm" and "AAAHHHEEEMMMMMM" for extended periods of time, but most of this was during action sequences so no one heard him. He did try it during a dialogue-y scene, and while a few kids did look back, they didn't say/do anything since Karan wasn't making it so that they couldn't hear anything. He did seem to like the music though, which is only a good thing.

To be continued...

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First post in the series here

Read it in parts, or settle down with a cuppa for a bit.

DAY ONE (9/12/2011)

Okay 6am...why is Karan awake? Okay. He needs to use the toilet. I wonder if I can go back to sleep after this? I dozed off for a bit but my grandmother called a few times so we had to wake up. Karan is disoriented by this point. He looked confused about being in my room, for one. Then spent the rest of the day walking in and out of Mom's room, trying to find her. He still hasn't got the hang of grabbing the iPad to show me what he wants so when I gave it to him, he quickly navigated his way to the Grace app and selected Mom's face. I couldn't bring her back from Bombay in a minute, so we settled for Skype and a phone call. He just got more annoyed. I've lost count of how many times he's left to look for her in all the rooms of the house and has come back to where I am, looking utterly disappointed. He's still got a bit of a cold, leaving him slightly tired. 

DAY TWO (10/12/2011)

Karan's still looking for Mom. Going to her room, sitting on her bed, waiting for her to appear. He refuses to talk to her on the phone or Skype. He's angry, that's for sure. I cook today...scary! I watch nervously as Karan bites into my chicken curry. What if he turns up his nose at it because it doesn't taste like Mom's? But he eats and seems to like it. Whew. But this is insane...I look at all the dishes piling up and how much I've to clean and it seems insurmontable. Why are there so many dishes?! Why does my father not help clean up?! Oh wait, he never does. But...I now see how much work there is in the house. I've even put the dishwasher to work and empty it at the end of the day. I'm pooped by the end of the day and just want to sleep!

DAY THREE (11/12/2011)

Karan wakes up again around 6am. I can't handle it...I go back to sleep and he walks up and down the room as I probably snore my way through for a few more hours. Today I don't cook; there is enough left over from yesterday. I do walk downstairs to piled up dishes...what a surprise...my father hasn't done anything. Again. I clean up behind him and after Karan's dishes, go out to the garden to pluck some tulsi leaves to make a homemade cough remedy. But then I have to put the clothes in the washing machine. For this I'd written down instructions on how to use it (yeah I know...I knew how to use the washing machines in Sheffield and London but those seemed far simpler!) and followed them to the T, hoping nothing funny would happen to the clothes. But everything seemed to go well. The clothes were clean at the end of it, which is great. Karan has stopped waiting in Mom's room but he still asks for her on the iPad. Uh oh...I've started coughing. I hope I don't fall sick...when I'm sick, I'm pretty much useless.

THE NEXT 10 DAYS

I give up trying to write every day. I'm just so knackered all the time! I told a friend I didn't mind tweeting because outbursts in 140-characters only seemed much less of a task than actually doing any work. I did fall sick...Karan essentially passed on his cold to me.

He eventually stopped looking for her constantly. Although he did occassionally ask for her by navigating to her picture on the iPad. Then there was the massive meltdown night.

To be continued in next post...where instead of days I write down incidents that I want to share.

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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!

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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:

invitation_for_Stalls_-_11-12.pdf Download this file

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

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I harp on so much about autism awareness and how I think there's not enough information about it out there in this region, and how there needs to be more resources for families...well, I read something last night and then again today that sort of proved my point (in my head anyway).

Telling link between diet and autism - The National shar.es/oIFGb

— Autism Eye(@AutismEye) December8, 2011

I saw this tweet last night, clicked and started reading. Dealing with autism on a daily basis, we've heard and seen it all. Including the idea of gluten-free diets, gluten-free casein-free (GFCF) diets and more.

Many years ago, we took the decision to put Karan on a GFCF diet. He was quite strictly controlled for many, many months. We saw no difference from before the diet and after, and eventually decided to re-introduce gluten and casein back into his food. No difference whatsoever. We realised there was no point in putting so many restrictions in front of Karan since it didn't affect his behaviour one iota.

The doctor in the article refers to 90% of children with autism having milk and wheat allergies. While it does not link to what study these findings are based on, I never knew it was conclusive, ie that dietary changes most definitely affect "autistic" behaviour. I did know that some people think changes in diet do help kids with autism and if that's true, then that's great you know. Whatever helps - there's nothing right or wrong I think. I guess what this just reinforces is how different every person with autism is, and how a method that benefits one person doesn't necessarily benefit another.

Then I saw these sentences:

Experts said there was a general lack of knowledge about autism in the UAE. Even the extent of the problem was not well recorded.

No shit, Sherlock! I don't know how many times I've needed to scream from the rooftops on how the knowledge about autism and special needs in general is not very high and it needs to be addressed. Now even experts have agreed with me. And this line here:

"We know it is a problem but we have no statistics to determine how many children are autistic," said Dr Ali bin Shakar, the president of the Emirates Medical Association.

And if doctors here don't have statistics on the issue...can I really expect the general public to know anything?

The second half of the story also focuses on costs associated with therapy and education for people with autism. This is true: it is expensive for families who deal with special needs if they want to go all the way. When I say all the way I think about schooling, then extra therapy such as speech therapy or occupational therapy or even physical therapy (for fine or gross motor skills etc). Not everyone can afford to do all of that here; when I read of how therapy sessions in certain countries in Western regions of the world are guaranteed no matter what, I despair a little. One-on-one sessions, which by the way, are highly recommended, can take a massive toll on the bank balance unless one is from a family of means. Here's a quote from the article:

The result is huge bills – an average of Dh70,000 a year to treat an autistic child, according to Dubai Healthcare City, which has four private treatment centres. But Dr Abdul Kareem Al Olama, an executive director at Dubai Healthcare City, says parents should never lose hope.

“There are many [public] facilities, such as Rashid Hospital and the Dubai Autism Centre, that parents can approach,” he says.

“Parents shouldn’t panic, there is help available.”

Two issues here: the expense (which is a lot) and then the doctor saying "there is help available". Yes, there is help available but there isn't enough. Do you have any idea how long waiting lists are for special needs institutions in the UAE? Of course we're going to panic when we wait, and wait and hope we get a call soon saying we have a place at the school! Of course we're going to panic when we hear the enormous cost of getting my brother one-on-one sessions with a speech therapist for example. (He doesn't go for one-on-one treatment FYI. I wish he did.) I've never lost hope for my brother...never will. I just get frustrated because I wish I could do more for him somehow.

On available therapies themselves, I've been looking at reports on how dolphin therapy helps children with autism. Do I even have the option of trying that out in the UAE? I saw news about a year ago saying this was in the pipeline but I see nothing to tell me it's a reality now (please, please correct me if I'm wrong; I'd love to be wrong about this one). In addition, some kids with autism take time to pick things up, and sometimes they just get in an instant. So if Karan doesn't take to something immediately, it will require many sessions to get something through to him...how much is that going to cost?

I also want to point out what this line in the article made me think of:

“There have been many improvements, but he’s still autistic and there are many barriers to overcome in the next few years.”

Heaven knows I'm not being harsh; I deal with autism myself every day... but no matter what therapy you put your child through, no matter how "normal" he or she will seem at the end of it if the therapy is very successful... autism isn't a disease that can be cured. If a person is autistic now, he/she will always be autistic. Autism is a part of the person. For life. The sooner families dealing with it accept it, the better it will be I think.

I think this article just reinforced my belief that the awareness levels in this region on autism and special needs is just really low, which only contributes to the discrimination and derogatory behaviour some of us have to face from the general public.

It's sad you know... people with special needs treated as "sub-humans" by other "humans" (not referring to doctors here but to the general public). What does that say about humanity?

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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

via gulfnews.com

 

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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]

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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).

See the full gallery on Posterous

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.

See the full gallery on Posterous

Brushes, glue and paint!

And boy did we get messy!

See the full gallery on Posterous

...except for this time when he decided he wanted to cut a bit and took the scissors from me!

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. 

See the full gallery on Posterous

Stages of the first painting

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

See the full gallery on Posterous

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

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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.

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Post on GeekFest and pictures coming soon on my other blog, "Devina Divecha. Journalist."; till then, you can view the Prezi I presented at the GeekTalks.

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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.

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

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