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.

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Karan’s first Tuesday Workshop @thejamjar

Guest post by Adita Divecha, Karan’s mother

Note: Sorry I didn’t take any pictures; Devina already told me I should have!

Devina had arranged for Karan to join the Tuesday Workshops organized by START at the Jam Jar in Al Quoz. They have 1/1.5 hour sessions every Tuesday where children with special needs get to do some artwork.

Karan has been doing a lot of painting in school and we thought this might be something he would enjoy and hopefully get involved in.

I was a bit nervous initially; I’ve never taken him outside for painting or art before. But I drove to the Jam Jar yesterday and found it easily enough. It’s a big open space inside and there were a few people already there, sitting at the long table with thick sheets of paper in front of them.

We met with Nicola who was from START and I signed in. There were also people from Dubai One filming, although I’m not exactly sure for what. They were asking volunteers questions about their work at START I think.

The volunteers were getting the kids to dip their fingers in thick paint and copy the artwork in front of them. Karan isn’t very good at imitating yet, and he hates his fingers brushing against in any new substance, but we tried. He dipped one finger into a bowl of blue paint and had the most pained expression on his face as he did so. He then wiped his finger all over his t-shirt. Then we hurriedly put an apron on.

So I asked for a brush for him and then he was okay. He did four paintings; didn’t copy the design very well but had wonderful splotches of bright paints all over his sheets.

After an hour and a little more, he got a bit whiny so we decided to leave while he was still in a reasonably good mood.

I think he liked it … let’s see what he does next week.

The Birthday Post

Karan was the birthday boy two days ago when he turned 15.

FIFTEEN!

In the evening, I thought we should take him to the beach. Hilarity ensued when he decided he didn’t want to walk through the sand and stayed put for the better half of the 45 minutes that we were there. Although I think he was mollified when we bought him cake, which he gorged on once we got home.

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To all those who remembered and wished him, thank you!

A very special Sports Day

 

Karan’s school, Manzil, organizes a Sports Day for its students, which is usually held in Al Thiqah Club, Sharjah. Every time, Mom and I head over to cheer all the kids on. We’re never told what Karan is doing – it’s always a surprise every year.

Now, Karan can be quite active, but only when he wants to be. If we tell him to run, or play, or do absolutely anything, he’ll clam up. For Sports Day, we just hope he’s in a good mood so he gets to participate as well.

This year, he was in two races. One involved him wearing some kind of paper giraffe hat, running to a vine with a string of leaves, picking up said leaves and running to the finish line. Haha, only he hates wearing stuff on his head…so when he ran to the leaves vine, he pulled off his giraffe hat and fiddled with the leaves. Still, he came third, after ambling. No running for my lazy darling.

The next race, he was given a basket and he had to pick up objects in his path, put them in the basket and run to the finish line. He did not run. However, he did amble a bit faster than usual, so he came second in the semi-final which put him in the final, where he came second again. Here’s the video of the final:

Not all of the kids are fast or want to run, and some don’t know why they’re doing it (like Karan for example). But it doesn’t matter. When someone crosses the finish line first, the audience (all parents except me!) cheers. And so on. And then the race is over but for one cute little kid far behind. It doesn’t matter. We scream, we cheer, we shout encouragements. Then when the child passes the finish line, we whoop.

Some of the memorable moments from the day include:

  • A little one who probably comes up to my knee moving his tiny little legs as fast as I’ve ever seen, looking adorable as he did.
  • A student who runs super fast, raising his hands in victory even before he crossed the finish line. He won.
  • Another student is one my favourites to watch on Sports Day. His enthusiasm and positive nature is unflagging. Every single year, whether he wins or loses, he crosses the finish line and raises his hands above his head, pumps his fists and looks at the crowd, cheering him on. This year he did not disappoint. I love love love LOVE his attitude; it’s so uplifting. He won a couple of races this time and I’m so happy he did.
  • Students running towards the finish line, then abruptly stopping a millimetre before the line, wondering whether they should cross it or not. Cuties.
  • A cheerleading performance by the students.
  • The Millennium School in Sharjah runs a Best Buddy scheme with Manzil, where some of their students volunteer for events, as they did for this day, and pair up with those students at Manzil able to communicate and become their peer buddy. They were terribly helpful during the event.
  • There’s always a race for the Moms and Dads who attend the event. Mom doesn’t participate because of her problems with legs, but generally I do. This time however, I’d managed to splay myself on a Karama sidewalk the day before and my knee looked like splotches of purple, pink and green, and my right leg was in some discomfort. So I declined to run. However, the best buddies clamoured around us because we were among the few not going down. Then those kids called me ma’am and aunty!!! I was appalled and even more determined to sit firmly in my seat. Aunty…AUNTY?!?!?!

Some pictures:

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I love attending events like these, and his concerts for example. It’s such a testament to what these children are capable of. It’s also so much more laudable considering the issues they face on a daily basis. For the NTs (neuro-typical…that’s all the “normal” folk to you), it’s just a race. You run. You place first, second, third, last…whatever. For my brother, it’s an achievement.

Congrats on your certificate Karan!

How we buy clothes for Mr. D

We don’t know if Karan understands or appreciates the clothes Mom and I buy for him, but we certainly enjoy it. As you can see, we found a t-shirt that said “Mr. D” on it and I knew then we simply had to buy it:

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I’ve transferred my love for buying t-shirts with phrases on them to when I buy Karan’s clothes. I don’t think we’ve bought anything for him (t-shirts i.e.) that are plain blocks of colour. There’s always something happening on his t-shirts…a graphic, a phrase, a combination of both! Like these t-shirts:

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There are a couple of restrictions though, as Karan has a couple of requirements for his comfort. The fabric should not itch him, especially around the neck, otherwise he starts scratching himself, so cotton is a good choice. In addition, we don’t buy shirts for him. It’s not easy for him to button things up and we just feel he’s more comfortable in tees…and we’re worried he’ll nibble the buttons off! The only shirt he owns:

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With regard to trousers, he doesn’t have any jeans. They don’t allow him the mobility trackpants do, and again, it’s simpler for him to pull the trackpants up than wearing jeans, zipping it and then buttoning it up.

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He doesn’t wear caps because he doesn’t like anything or anyone touching his head. Lately however, we’ve trialled putting caps on and seeing how long it takes before he whips it off and throws it across the room.

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Shoes are another consideration. His fine motor abilities, while improved over the years, are not that developed for him to be able to tie shoelaces. Velcro shoes work best. I must tell you though, it’s quite hard for us to find adult shoes that have velcro on them! But when we eventually do, we snap them up! So he wears sports shoes or sandals with velcro, which are easier for him to wear.

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Clothes shopping for him is not without limitations, but even within that, I think he looks rather smart, doesn’t he? 🙂

In the front seat

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Mom sent me this picture today. It’s showing Karan sitting in the front passenger seat of Mom’s car. If you look at the background of the photograph, there’s a clothes-stand in the backseat, which meant Karan would’ve been extremely uncomfortable sitting at the back. He normally doesn’t sit in the front because…well, he gets excited because it’s new for him (we’ve done trials in our quiet neighbourhood), and loves stuffing his face near the AC vents and we’re just afraid he might get upset and grab Mom while she’s driving on Emirates Road (she has to drive from one end of Dubai to Sharjah to take him to school and back).

But this day, she had no choice.

And this is him after they arrived home. He apparently sat all the way really happily, staring out the window and did nothing untoward. Fingers crossed he’ll keep this up. It’s a real milestone for us, that he sat from Sharjah to Dubai, on a journey that takes a minimum of 45 minutes (if there’s traffic at the National Paints roundabout, all bets are off…it could even take up to 3 hours). The only “problem” was that he got annoyed that the sun was bearing down on his hands. In the back seat, he doesn’t have to deal with any sunlight and sits happily in the shade. What a princess! 😀

So here is our darling Karan, in all his glory, in the front seat of our car.

Congrats sweetheart!

Karan’s big adventure – part 2

Guest post by Adita Divecha, Karan’s mother

Karan has an extra tooth which has come up on his palate next to a molar on the right side. An appointment had already been taken with the dentist, who happens to be my husband Rajiv’s cousin, for the day after we arrived.We arrived at the clinic in time and were made to sit in the waiting room. Karan was very quiet and kept looking around fearfully as I guess he could sense we were at a doctors clinic. It always smells different in a clinic and he always seems to know when we’re at a hospital or clinic.

Finally, we were ushered in. One look at the chair and he refused to sit on it. There was no whining though. He shook hands with his uncle ,the dentist, and gave him a big smile. He opened his mouth slowly after being coaxed a few times, all the while standing and holding one of my hands tightly. This had to be done a few times but Karan did it without whining. This was a great relief. Anyway, the doctor said that as the extra tooth was not hurting him in any way there was no need to remove it .There were no other problems like cavities so no cause for worry. Only his teeth are too sharp so as a preventive measure they should be rounded or blunted. This will have to be done in the next few days under anaesthesia.

Rajiv’s cousin sister Kaajal who lives in the US has also come down to Mumbai with her husband and two kids. They came over to meet us at our home. Karan just waved at them when told to look and say hi and went and sat on the sofa playing with his ball.That evening all of us went over to Rajiv’s sister Madhavi’s home for dinner. She has a dog, a beagle, called Toto. When Karan heard him barking he was a little taken aback and kept staring at him. Toto started jumping and licking my hand while I petted him. Karan had gone and sat on the sofa and suddenly Toto jumped on him and started licking his face. All of us kept looking at Karan anxiously but there was no need for concern. Karan was laughing loudly and letting Toto lick him. Then he started petting him, pulling his ears and touching his tail, putting his hand in Toto’s mouth, clearly unafraid. And Toto was letting him do this without growling. It was quite amazing. And then Toto just sits next to Karan at times and Karan just touches his back and at times they both ignore each other. But Karan is not afraid of Toto and neither is Toto afraid of Karan. It is really amazing how animals understand children like Karan.