Category Archives: Uncategorized

When lunch didn’t go according to plan

As I’ve posted before, I have been trying to take Karan out for lunch to different restaurants to get him used to new places, and not stick to a usual routine.

Anyway, one place which we regularly go to is Aappa Kadai in the Dubai Marina. Not only is the food good, they’re pretty accomodating when Karan decides now is the time to belt out loud noises.

Karan has been really good every time we went out – so I wasn’t too surprised when we had an off day. Even for an “off day” though, it wasn’t too bad. We settled down in the restaurant, ordered some food, and Karan started eating the kababs (which he is madly in love with). He’d eaten maybe two kababs when…

… a small girl at the next table (perhaps 4 or 5) started talking. I don’t know what it was about her voice, bless her, but it riled my 17-year-old hulk up. I have a hunch it was her pitch and tone, because he’s normally okay around kids for most part, but sometimes noisier ones just upset him. It’s not their fault – they’re being kids! Karan’s just got sensitive hearing :-/

Anyway, she kept talking, and Karan started getting irritated. I was sitting next to him and he started doing something he hasn’t done in a while and reserves only for when he’s getting annoyed: pulling my clothes with a grip that’s nearly impossible to escape. I think initially when it used to happen, it was embarassing – one, because we live in the Middle East, and two, because my family is Indian. Both reasons lend to embarassment when clothes are pulled, bra straps etc are shown and whatever else. I’ve always maintained when he used to do this before, that I better wear good underclothes when I go out because I’ll be damned if he pulls my clothes and shows off icky underwear (people who deal with similar situations…you’ll understand! Even my Mom got around to this method of thinking).

So he started doing that and refusing to eat. I just placed my hand over where he was pulling so as not to give away more of a free show than he was offering. My dad suggested we leave. I refused saying if Karan didn’t want to eat, that’s his problem, but I’m getting my food first. However when my bra strap peeked out despite my best efforts, my parents needed to be calmed down. A centimetre of my bra strap showing ISN’T going to tarnish my honour guys, just calm down. Yeah other tables might be staring, but that’s their problem, not mine.

I eventually told Karan I didn’t appreciate having my clothes stretched, slowly extricated myself from his grip (which is tough because it’s vice-like) and sat on the edge of the table where he couldn’t reach me. We finished our food, and only then did we leave. His food was packed, and at home he was hungry and ate it up.

He’s got to learn that we’re not going to pack up and run – there are going to be many kids in the world being annoying/grating to his ears. I think the more he goes out, the more he’ll adjust. If we pack him away, he’ll never learn to cope with a range of experiences.

I don’t want to expose him to more distress than necessary, but we need to get him comfortable with this big, crazy world, right?

Accept the difference. Don’t ignore it.

The following image from www.postsecret.com

[autism.jpg]

When I saw this post, I started thinking about those who deny the existence of special needs in their children, and withhold from them the opportunity to get any therapy that might be needed.

I’ve come across those who are offended at the idea that their child might have “something wrong” with them. I’ve come across others who find the suggestion laughable: “My child? Special needs? Haha, what nonsense!” and then, there are those who just behave as though everything is fine and blankly ignore any suggestions from well-meaning others to perhaps get some help? When people say: “I can’t believe her teacher/doctor/whoever said we should get her checked for <insert whatever special needs term you like here> … I mean, she’s just a little different, but that’s no reason to label her!” I’m not sure what to say … what’s wrong with getting your kid tested?

And what is this stigma attached to special needs? The concept that people who are differently abled from the majority of the population as being “lesser” than everyone else is revolting. Sure, not all those with special needs are geniuses…but they’re pretty cool anyway. Just like you and me.

I wish parents would understand: if there is even a small chance your child has some kind of special needs, getting help is not a bad thing. Labels mean nothing nowadays. Labels are what you make of them. IT’S OKAY if your kid has autism. Or Down Syndrome. Or Fragile X. It’s going to be difficult, sure. But the “label” is not going to ruin anyone’s life. Not unless you let it.

I’m not even saying to go with one opinion. Take two. Or three. But if everyone says the same thing, get help. Please. Don’t ruin your child’s life by being too late.

Lunching with my brother

I’ve been trying to get Karan to go out for lunch every weekend, at least once, so that he gets out of the house instead of staying cooped in. So far we’ve experimented as a family (all four of us), as a trio (Karan, my Mom and I) and today, it was a duo date – just Karan and I.

I took Karan to Aappa Kadai in the Dubai Marina a while back, and he fell in love with their kababs and mango lassi.

So today, when it was just the two of us, I decided to go back there. I quite forgot about the time, and ended up there around 2.40pm rather than much earlier.

It was packed.

I decided to order the food as take-away, but the staff members there (who recognised Karan and I from our many outings there) said one of the tables was clearing soon. So I gave my order and waited. They were really cool about it…gave Karan a chair to sit on so he wouldn’t get agitated.

I did get the usual stares from the pre-dominantly desi crowd. But there was one woman there, with her husband and two kids. She looked at Karan for a bit, but it was different from the usual weird stares I get. She then looked up at me and smiled.

I felt much better instantly – till that point I was fretting a bit about whether Karan would wait for the tables to clear, whether he would get upset because he was angry. She, however, with a smile that said to me: “Hey, hope you’re okay!” , made me feel just a little less worried.

A table did clear up within 10 minutes or so, and Karan gobbled up loads of kababs and his customary mango lassi. He was really cute… he was quite hungry and every time a waiter walked past with a tray of food, he would straighten up and look at the tray hoping it was for him.

Honestly, the staff at Aappa Kadai are absolutely lovely when it came to dealing with us. We’ve never told them Karan has autism or anything, but they’ve always treated us well. And that is why I love going back. Apart from their crazy good food of course!

Apologies in many forms

It’s been a while. Hello there.

A lot is my fault – I have been so caught up in work, I have not been able to pay full attention to this blog, or any of my blogs.

But anyway, apologies are in order.

A lot has been happening with Karan. He’s got his summer vacations now, and is fully installed at home with my mother. Perhaps I need to remind her this blog exists, because she, not I, will be able to tell you more about what’s happening with him right now.

He’s 16 as you know, and it’s now showing through facial hair growth. I think he’s going to have to learn how to shave soon. Not looking forward to that…feels daunting. Not that I’ll be doing that, since I’m not at home very much.

Last night I came home early and curled up with a book on the sofa, and he sat next to me, with his head on my shoulder. I missed him and I felt gratified to know he missed me enough to want to cuddle up next to me for a bit (in 10-15 minutes his attention wandered and he walked off haha).

While he sat there, tranquil, as I read my book, I felt a bit sad. Like I haven’t done enough. I remembered some of my Gappa’s last words to my mother: “I’m sorry I didn’t do enough for Karan.” I felt like that last night. I think I have tried, as much as I can, to do enough for him. I know I am limited by time constraints, like a 9-6 job for example, and having my own life outside of my home, but that doesn’t make me feel okay about it I think.

So I try and contribute by helping spread the word about autism and special needs-related events, I try and find things my brother can go to, like his painting classes with START, or finding places where he can get evaluated and get more therapy. Things like that.

Spreading awareness where I can.

It’s been harder lately, again because of time constraints, but I do try.

Even so, I feel like I need to apologise…not to anyone else, but to Karan.

I’m sorry Karan, because I wish I could do more. I love you fatso.

Autism and restaurants – my first experience with discrimination

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

A mother’s thoughts on Autism Awareness Day

Guest post by Adita Divecha, Karan’s mother

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.
Last month my son Karan celebrated his 16th birthday. He cut his birthday cake with his friends and teachers at his school and enjoyed himself. His teachers took photos of him cutting the cake, even smeared his face with cake and he did not get upset. As I watched my tall (he towers over me) and handsome son walk with me to the car, I realized how much he had progressed over the years. Of course there are still many more things to be achieved but we will get there soon.

Also, to digress a little, I realized suddenly after so many years that Karan would have been in the 10th grade if he had not been the special child that he is. I mean for all these years I have never really thought about this. And also even now I realized this just because my niece, Ananya, who is 4 months older to Karan, was having her 10th grade exams. And I was relieved I did not have to go through the tension I felt my sister-in-law Madhavi was going through because of her daughter’s exams. I don’t even know if I am right in feeling like this.

I think my chain of thoughts are still muddled. I was talking about Karan’s progress. We tend to celebrate every little thing that he achieves. I still remember how he used to scream when we would throw a ball to him. It is now a thing of the past: he loves to dribble the ball and throw it into the basket now.

He has mastered the concept of drinking with a straw after a long time. He just would not understand how to suck, something we just take for granted. So this was quite an achievement.

And the greatest achievement of all…He is toilet trained but was still wearing diapers at night as he still did not understand how to go to the toilet at night if he needed to. Then suddenly one fine day – I mean night – he suddenly figured out he just had to get up and go to the toilet if he needed to and that there was no need to wear a diaper. How we screamed in happiness. Now I am just waiting for him to achieve the next step of being able to clean himself. I am sure he will achieve this too.

He loves to paint and his brush strokes are getting better and better and he really looks forward to and enjoys his weekly outing to the START Workshops he attends. Also he enjoys beading and so likes to sit and make necklaces and bracelets. We have also introduced him to the iPad which I hope will improve his communication skills.
He likes to sit in the front seat of the car while going to and from school. He puts on his seatbelt as soon as he enters the car and then puts on the music. He does not like me talking on the phone so if it rings he puts his hand on my mouth, as if to say “No talking”. Very smart boy.

So on Autism Awareness Day, I ask you to educate yourself a little bit more on this enigma called autism…now that the latest figures are showing 1 in 88 children have it, it’s highly likely you will know someone who is autistic.

So go on, I’ve laid my thoughts bare for you…ask me anything you want to know. Perhaps with spreading knowledge, will I get acceptance for my smart son.

Please stop saying the word retard

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.

Marriage, autism and doubts

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.

 

Ryan Gosling’s ‘Hey Girl…’ – Special needs edition! by @xtremeparnthood

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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via extremeparenthood.com