Karan’s big adventure – Part 1

Guest post by Adita Divecha, Karan’s mother

Both Karan and I have not been out of Dubai for the past eight years. Sometimes because I did not want to go and sometimes because there was no one to travel with me as I felt it was a bit difficult travelling with Karan alone. Most of the time our relatives would come to Dubai to meet us. This year we finally decided to go to Mumbai for the Christmas and New Year holidays as my husband Rajiv was there with us. I had been talking to Karan about the trip for many days so as to get him prepared for it. I dont know if it registered in his mind as there was no response from him but I like to think that it did.

The day finally dawned and we left for the airport. He was very calm and walked through all the checks and we were finally sitting in the business class lounge. He refused to eat anything there and as the time to departure came closer, Rajiv took him to the toilet. It is impossible for me to take Karan to the ladies toilet now as he towers over me. He is 172 cms tall and I am just 155 cms. And he cannot be sent to the toilet alone so I have to have a male presence with me. Anyway, the departure gate for our flight was very far from the lounge and when we mentioned that Karan was autistic and might get upset because of the crowd and the long walk, the Emirates airline ground staff arranged a buggy to drive us there. This was really excellent but Karan refused to get into the buggy. When we tried to push him in he started jumping up and down and screaming at the top of his voice. We got many stares by the people around us: some amazed, some compassionate and some disgusted….something I am very used to. It does not bother me anymore. Finally, I got into the buggy and held out his favourite koosh ball and after hesitating a few times he got in and then Rajiv got in after him so that Karan could not jump out again. Karan was ok after that and we finally boarded the flight.

Karan was very good throughout the flight. He sat between Rajiv and me and kept playing with his ball. Only while taking off and landing, he held my hand tightly as the noise was deafening and I guess he was frightened as he had his scared-deer look on his face. I had made sandwiches for him incase he would not eat anything on the flight but the main course for lunch was his favourite tandoori grilled chicken. So he enjoyed eating that and did not want to eat the sandwiches. But he refused to enter the toilet on the plane. I guess this was because it was too tiny and looked different from what he is used to. He went to the toilet only after we landed at Mumbai airport.

However by this time he was very exhausted and the noise of the people around him had started to irritate him and he started his whining and crying.We did not have to wait a long time for the luggage which came quickly. The customs officer took one look at Karan crying and stomping his feet and just waved us through which was a blessing. Karan calmed down once we were sitting in the car on our way home with his favourite songs playing on my phone.

All in all, the journey was quite good but i dont know how he will be able to cope if the flight is a longer one. Anyway, this was a good start and I hope it will get better and better.

Devina: I’m quite excited that Karan is on this trip…I think it shows how much he’s progressed over the years. I don’t think he would’ve handled it this well a few years ago. I’m so proud of you Karan!!!

Going to a “normal” school

Guest post by Adita Divecha, Karan’s mother

Karan loves going to his school. He attends Manzil centre for challenged individuals which is located in Sharjah. He has been going there since 2006 and is very well settled. The drive to the school from our house takes at least 45 minutes to an hour depending on the traffic. But Karan is doing well there so it is worth it and I dont mind the commute. He seems to recognize the way there because when just recently, we went back to school after it reopened in September after the holidays, he got very excited, started rocking and laughing in the car. I have to put a CD of his favourite songs so that he is calm and enjoys the ride.

This year his school has started a partial inclusion programme with The Millennium School in Sharjah where all the students from Manzil attend a full school day there. This happens every Wednesday. All Manzil students participate in the assembly, mass P.E., sport, music and art & craft sessions. More activities are being planned to ensure maximum benefits. Some of them are swimming, computers, basketball, tennis, football, athletics, badminton, clay modelling, painting and other art & craft activities. Students will assessed by staff of both schools to see how each one benefits. Some of the Manzil students attend the classrooms too.

Karan seems to like going to the Millennium school too. He gets very excited when I take the road to this school and park in front of it. He loves playing basketball it seems…no small wonder as his favourite toy is a ball. Karan does not attend the classroom because he is non verbal and does not read or write but he takes part in the other activities.

This is a great initiative by both Manzil and The Millennium School and I am sure it will benefit the students immensely. I am very pleased because my Karan seems very happy too.

I judge my friends by how they treat my little brother

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It’s true. I do.

When I make new friends anywhere, it’s important for me to observe them when they meet Karan. Or if I mention he’s autistic, I want to see what they say. I’ve had a few people say they’re very sorry and I immediately think of ways to avoid them. I mean, I love Karan and I’m not sorry for who he is. Yes, it would’ve been easier for everyone – and even more so for him – if he wasn’t autistic…he would’ve led a fuller life, but his autism makes him who he is and I love him for all his quirks. Yes, even when he chewed my Lil Ms Chatterbox bookmark. And tore my t-shirts. And spat over my photo frames. Okay maybe I got a little mad. Moving on… 😉

It’s important for me to see how they behave around him, if they’re comfortable or not. Another indicator of this is whether they include him in conversations. I’ve had people pretend as if he wasn’t there – their logic I suppose was that he can’t understand us (or so they thought) so no point in talking TO him. People who talk to him…I appreciate them.

So yes…I judge YOU based on how you treat my little brother. Sue me.

Finding autism everywhere

I was on the Tube (London Underground for those who may not know) last evening. On the District line to be precise (random thought: why are the Tube lines the colours they are? What makes the District line green? What makes the Central line red?).

But I digress.

I hopped on to a train and picked a seat. It was blissfully empty, mostly because I was at a stop away from central London. When I sat down, even though I had my iPod Shuffle blasting Muse into my ears, I noticed a movement from the corner of my eye. When I looked ever-so-slightly to my left, a young man (possibly mid- to late-20s) was sitting at the end of the carriage, with a soda plastic bottle in his hand and he was grinning. And giggling. My knee-jerk reaction: what’s wrong with him? Has he had too much to drink?

In another 2-4 seconds, I realized, quite shamefully, I was wrong. He started rocking, babbling and laughing. He was most definitely autistic.

People were looking at him. Staring even. Avoiding him. They were afraid of him.

I left the train a few stops later and he was still there, crushing his soda bottle and stuffing his fingers in his ears. And my wish for him as I stepped off was that he reached wherever he was going safely.

You know what struck me right after? People are going to be afraid of my beautiful baby brother. He may be 14 now (though he looks much older), he may be taller than me for a good amount and he may be a hefty guy. But he’s still a baby. A baby who cries, crushes bottles, giggles randomly, stuffs his fingers in his ears when surrounding noises are just too much, and rocks when excited.

And people are going to be afraid of him.

Because he’s different. Because they don’t know what he’s going to do next. Because he doesn’t fit society’s expectations of what is “normal”.

FYI: being “normal” is over-rated.

My brother: the actor!

Now, I love my brother very much. He’s the apple of my eye, my little pumpkin and a sweetheart. He’s also quite a fraud. And he pulls wool over my Mom’s eyes, and sometimes mine, quite convincingly. He’s a class actor in his own right.

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Case #1: Wearing shoes

Karan is quite capable of wearing his own shoes. Velcro ones that is; he can’t handle lace shoes whatsoever because he doesn’t understand how to tie them. Which is why we get him velcro shoes and sandals only. Anyway, he’s learned how to wear them, so you’d think he’d wear them on his own all the time. Right? WRONG.

When Mom tries to make him wear his shoes, or I do, he fumbles. And crumbles. And cries. And tries OH-SO-HARD but those shoes will stubbornly not go on his feet and we end up making him wear them.

In school, when his teacher tells him to do it however, they go on OH-SO-QUICKLY. I saw this for myself two days ago, when Chirag was at our house. We were getting ready to go out and I, in a fit of laziness, asked him to give Karan his sandals so I could make him wear them in a bit. Chirag told Karan to wear his shoes. I protested saying he wouldn’t do it. Thanks Karan, for proving me wrong. That little acting hulk (read: Karan) just opened up the velcro at Chirag’s urging and slipped his sandals on just fine, thank you very much. No crying, no protests, no tantrums. That’s it, I’m going military on you Karan. Watch out…I know you’re acting!

Case #2: Eating food

Karan can eat his food with a spoon. Me, I’m toughie on this. When I sit next to him, he scoops his food fine and eats it all and just struggles towards the end when there’s very little food left and slightly harder to scoop. When Mom’s next to him, he takes AGES and ends up making her scoop for him. That little actor.

And he can chew his food just fine. Didn’t he chew all those chicken kababs and Toblerone chocolate in a hurry two days back? Ummm yeah, not when it comes to food he doesn’t like. He’ll keep it in his mouth for ages and just stare at us with his mouth stuffed but NOT swallowing. Karan, eat those veggies NOW (those who know me might point out that I don’t eat any veggies anymore; I’ve done my time. It’s his turn now!).

Although, once he turns his Puss-in-Boots eyes at us … no, no, stay strong and firm Devina, stay strong and firm!

Let them stare if they want to.

Guest post by Adita Divecha, Karan’s mother

Karan never cries when he hurts himself.

What I mean is that if he bangs into a table or chair or if he falls he does not, like other kids, start crying or rub the area where he got hurt. He will just sit down somewhere and perhaps start playing with his ball or just lie down on the bed.

I come to know he has hurt himself only if I see a bruise after a few days. I don’t think he can relate the pain of hurting himself to crying. At times after I see a bruise on his body with any swelling and if I touch it, he has even started laughing hysterically.

Of course this does not mean that he never cries. He does cry at times, suddenly, without warning and starts hitting himself on the sides of his head. Sometimes so hard that his forehead and sides become red. At such times I feel so helpless…is his head paining? Or is it his stomach? Ears? Or is it because a sound upset him? Or the tone of my voice? All I can do is to stop him from hurting himself further is to hold his hands down and calm him down by speaking in a firm but calm voice. These episodes last for at least 30 minutes to one hour.

I have also found that he calms down faster if I sing his favourite songs to him. At times when I hold his hands down to stop him hitting himself , he grabs my blouse with his teeth as if to bite me. He has torn many of mine and Devina’s clothes like this. I used to get embarrassed earlier when he used to behave like this in public as people would stare at him as if he was badly behaved, but now I don’t care what they think.

Let them stare if they want to.

Moments of laughter with Karan

Guest post by Adita Divecha, Karan’s mother

Looking after a child with special needs – especially one who is diagnosed as ‘low functioning’ on the autism spectrum – is quite a challenge. There are so many things that come up on a day-to-day basis that leave you confused, angry and helpless. At times the whole day goes by, and you feel you have not achieved anything positive.

But life with Karan is not all problems and difficulties. He provides us an opportunity to laugh too. There was this one particular time when he saw Devina sitting next to me and chatting. He came running and jumped between us and put his hand on my mouth to stop me from talking to her. He then pushed Devina away and hugged me … and both Devina and I started laughing. Then there was the time when he used to wait for Devina to come home from college. When she was back, he would follow her around the house and then go up to her room where she used to put on the songs he likes. He would sit there sighing with content. He used to be Devina’s tail when she was here and still is when she comes on holiday. He misses her a lot I think, because whenever she comes back, he ignores her for a few days to show her that he is upset with her for not being there and then warms up to her again.