All I can say is: Welcome to our world.
Over a year ago, I’d written something to submit as part of my portfolio for my Master’s degree. Here’s a short excerpt (read the entire piece here):
Too often people use disabilities as an abusive way of insulting the so-called normal human beings. A few years ago, my family and I were in a restaurant, my then 4-year-old autistic brother started crying and refused to calm down. A patron sitting at the next table looked over and said very loudly: “What’s wrong with these people? If they have retarded children, they should keep them at home.” Then we were asked to leave the restaurant by the management because ‘the other diners were getting disturbed’. It hurt. It hurt because my brother is not retarded. He, like thousands of other people has an autistic spectrum disorder. It also hurt because it was acceptable then (and still is) to insult someone by way of calling them ‘retarded’ and prevent them from experiencing a routine aspect of life. It’s absolutely abhorrent when one hears the word ‘retarded’ being thrown around as if it were commonplace even in classrooms in secondary schools.
Last night I saw this tweet from Ellen Seidman (or @LoveThatMax as she’s known on Twitter):
Twit friends: For next week I’m tweeting at people who use “retard” as a hashtag—and asking them to take this pledge http://www.r-word.org
I had a look at their website and signed the pledge, and plan to spread the word as well. It just drives home the point that I was trying to make a long time ago: the r-word, or “retard(ed)” just hurts. It’s incorrect, offensive and derogatory.
The website has informative pages on why you should take the pledge, as well as an explanation of why the r-word is hurtful. While you’re at it, have a look at how many times the word has been used on the world wide web, on the R-word counter.
My brother isn’t retarded. He has autism. He doesn’t suffer from it. Give him, and anyone with intellectual disabilities, respect.
Karan was the birthday boy two days ago when he turned 15.
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.
To all those who remembered and wished him, thank you!
Mom’s old car was sold 10-12 days ago. A new one came less than a week back. Rather than get upset with the change, he absolutely adored the new car. It’s big, spacious and high enough for him to peer out the window when we’re cruising on the hot Dubai roads, just like the previous car we had. I was informed that when they went car hunting, he got into this car at the showroom happily, but refused to clamber into a smaller car. He’s a space junkie for sure.
When he got into the car, he couldn’t stop grinning, and laughing a bit towards the end of his first drive in the new car. Just seeing the happiness and excitement on his face made our 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?!?!?!
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!
Guest post by Adita Divecha, Karan’s mother
Once we had to go to Madhavi’s (Rajiv’s sister) place by cab since the car wasnt available. So we we left our house and went downstairs to get a cab. Luckily, there’s always a long line of Fiat taxis – the black and yellow ones – just below our house. We, ie myself, Karan and Rajiv, hailed a cab.
The thing with these taxis is that the doors don’t open all the way. I told Karan to get into the taxi, but he refused. He kept staring at the taxi for a while. Then he put his head in and looked at the seat and then he came out again. It was quite comical. Then he stood there looking at me with a frown on his face. Rajiv kept telling him, “Go inside” but he refused and kept doing the same thing around 3-4 times.
Then he slowly put one leg in and then brought it back out. Finally I got into the taxi and told him to come in. I said, “Come in, see Mummy is also sitting here”. Still he refused. Then I showed him his koosh ball (which he likes)…and he finally got into the taxi. Then Rajiv sat in the front passenger seat.
Karan was staring at the taxi driver. The taxi driver was, in turn, staring at us wondering what was going on, wondering why such a grown-up looking boy wasn’t getting into the taxi. Karan was constantly making the sounds “AAH! AAH! AAAH!” and held on to my hand tightly, with a look that felt as though he was wondering where his mother was taking him. When the taxi reached its destination, Rajiv opened the door and Karan couldn’t get out of the taxi fast enough.
We didn’t sit in a taxi again.
Clearly my son was born in a 4WD (he’s recently been refusing to get into any other kind of car, and if he does, with some hesitation).
So Karan likes watching Salman Khan on television, and likes quite a few of his songs. It does depend on his mood though – if he’s in a good one, he’ll watch whatever’s happening on TV and smile. If he’s in a blah mood, he’ll sit quietly but listen.
The Filmfare awards was being broadcasted, and there was a Salman Khan dance sequence. He settled down in the sofa opposite the television and watched. I was standing there with Mom’s phone, knowing I’d end up catching him grinning or laughing, when he turned to look at me, opened his mouth wide, didn’t make a sound but gave me this look!
It was a “Quit bothering me, I’m trying to watch TV!” look non? 😀
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:
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:
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:
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.
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.
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.
Clothes shopping for him is not without limitations, but even within that, I think he looks rather smart, doesn’t he? 🙂
I think this is a brilliant initiative, and I urge authorities in the UAE to look into the same.
PHILADELPHIA – At 8 p.m. on a recent Saturday, Southwest Airlines Flight 2149 was poised to push back from the gate. Flight attendants gave fasten-seat belt instructions, and First Officer Peter Hayes announced, “There’s 25 minutes of flight time until we touch down in Philadelphia.” Capt. Todd Siems said the Boeing airliner was cruising at 37,000 feet. And after he turned off the seat belt sign, the young passengers were served complimentary Sprite, cranberry apple juice and airplane-shaped crackers.
Flight 2149 never left the gate at Philadelphia International Airport, though. It was a practice exercise for children with autism and their families to become familiar with air travel – carrying bags, getting boarding passes, going through security, waiting at the gate and sitting on the plane.
“I’m going to China, but we won’t really,” said an imaginative Gena Catanese, 5, of North Wales, Pa., accompanied by her parents and sisters Isabella, 6, and Emma, 3.
Just 18 months ago, Gena had a traumatic travel experience on vacation in Orlando. She expected to pre-board the plane with her family, but the protocol was she could pre-board only with one parent.
Gena became agitated and “over-stimulated,” her mother, Melanie Catanese, said. “There was no way she was able to fly home that day.” After receiving a frantic call, Gena’s pediatrician, Wendy Ross at Albert Einstein Medical Center, phoned and faxed letters to the Orlando airport.
“I thought, ‘This can never happen to one of my families again,’ ” Ross said. She contacted Philadelphia airport and Rick Dempsey, head of the airport’s Americans With Disabilities Act review committee.
“She wanted to bring a simulated airport experience for children with autism and their families,” Dempsey recalled. “The committee thought it was a great idea. The TSA bought into it. We even got an airline, Southwest, to buy into the idea.” Since then, there have been three “mock” flights.
“We asked the crews if they would mind sticking around for 30 to 40 minutes and go through a mock turnaround on a flight, as if we were flying somewhere,” said John Minor, Southwest’s local station manager.
“We let them know that autistic children are very literal, so we don’t want to say, ‘We’re flying to Disneyland,’ ” Minor said. “We just say, ‘This is a test run.’ ” Frontier Airlines plans to host a simulated flight for autistic children Dec. 11, and US Airways Group has one planned for January. British Airways also has expressed interest, Dempsey said.
In the spring, Ross trained 130 airport and airline employees about autism, a condition diagnosed in one in 100 children annually.
“It’s not something you outgrow, but if you get really good therapy you can cope better, compensate better,” Ross said.
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.