Category Archives: Uncategorized

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? 🙂

Autistic children get trial run for air travel

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.

Philadelphia Inquirer

 

via washingtonpost.com

 

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!

The One with the Road Trip: Karan’s Big Adventure Part 3

Guest post by Adita Divecha, Karan’s mother

Note: If you haven’t already, read The One with the Flight (Part 1) and The One where Karan Goes to a Dentist and Pets a Dog (Part 2)

My husband, Rajiv, had to go to Pune for some work and he suggested that we go along with him. It was to be a day trip. We would go in the morning and come back by evening. Pune (it used to be called Poona earlier) is about four hours by road from Mumbai because of the new express highway which links the two cities. It used to take much longer earlier. Of course this highway has been there for quite a many years but is new to me as I have not been to India for the past eight years.

Anyway, we left early in the morning at 7.30am with Madhavi (Rajiv’s sister), at the wheel. Rajiv was sitting in front and Karan and myself at the back in the car. Karan is used to sitting in a car for long periods as he commutes daily to school in Sharjah from our house in Dubai. So he was very happy, looking out of the window taking in all the scenery. There was a little traffic on the way but not too much and once we were out of Mumbai, it was smooth sailing. We stopped on the way at a McDonalds outlet and Rajiv took Karan to the toilet. Then a little ahead we stopped again at a rest stop (in a small town called Khopoli, i think) and had breakfast. Karan did not want to eat anything there…He had already had his breakfast before leaving home. He ate a few of the biscuits he likes later in the car.

We reached Pune by 12pm and Rajiv met the person he was to meet and finished his work. Again, as Karan needed to go to the toilet we went to the Poona Club where he would be comfortable. Then we went to my cousin sister Padma’s place as she had invited us for lunch. Karan enjoyed himself there as he got to lie down on the sofa in peace (one of his favourite activities…hahaha) and he got his favourite chicken biryani for lunch. Later he had mangoes for dessert. So he was in a very good mood.

We left Pune around 4.30pm after a really great lunch and tea and having a really good time with Padma, chatting about so many things. Karan also was fine on the way but a little whining had started. So I made him listen to his favourite songs on my phone and he calmed down. The whole journey was uneventful but once we entered Mumbai, the traffic jams started. Due to the traffic jam and the incessant honking of the cars, Karan started getting upset and started crying. We had to stop on the way at a hotel so that he could be taken to the toilet. He seemed to feel a little better after that but as he was still whining, the music had to be played again so that he calmed down. We reached home finally at about 9pm after which he had his dinner. Karan went off to sleep very quickly as he was exhausted after his trip.

All in all, it was a very good experience for Karan and he sailed through with flying colours

The f-word for parents of kids with special needs via @LoveThatMax

Today, I got an email that I couldn’t stop thinking about all day long. It was from a mom on an e-loop I’m part of; she’s been lobbying on behalf of special needs families for years, and she invited us to attend a meeting happening next week. It’s about policy plans for our state’s Division of Developmental Disabilities. There will be a lot of talk about the Community Services Waiting List, which is what you have to be on in order to be eligible for housing for the disabled, as well as other support services.

The “f” word in my life is Max’s future; it’s not something I talk about a lot. On purpose. Looking that far ahead unsettles me. It’s what I had to learn to stop doing when Max was a baby, because the more I kept trying to envision what his future might be like, the more anxious and depressed I’d get. And so for years, I’ve set my sights on the present of Max and what he is doing, rather than what he might do someday. It’s been a good thing for both of us. A healthy thing.

I don’t have my head buried in the sand. We are in the early stages of setting up a special needs trust for Max. But the thought of Max in a home for the disabled? It makes me cry. I am tearing up as I type this, and I’ve had to stop a couple of times. My mind goes to bad places when I think of it.

Max in need of a special home?

Max without me and Dave?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He’ll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

Would he be able to feed himself?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

Would it be weird for me to visit every day?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that Max is eight years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a coffee shop we used to go to before it closed. A group of residents would come in sometimes, a mix of adults with mental disabilities and Down syndrome. I’d spy on them the entire time from behind my cup of coffee, watching them talk, laugh and enjoy themselves, as friends do. Sometimes I’d marvel at their camaraderie and feel glad for them. Sometimes I’d tear up as Dave would say “Awww, honey, don’t” because I kept picturing Max as one of them.

The truth is, I’m not yet at the special-parent developmental stage where I can think of this. It’s still too painful. And yet, what’s helped me help Max over the years is researching things that could benefit him. I know I should attend the meeting. From what I’ve heard, the waiting list for housing is very long, he’ll probably need to get on it sooner rather than later, and it would be good to at least learn about it.

I asked Dave if he thought we should go. “Yes,” he said, without hesitation. “Let’s educate ourselves.” He doesn’t get emotional about stuff like this.

So I am dreading it, but I’ll put on my big girl panties and go.

via lovethatmax.com

Saw this post over at Love That Max and identified 100% with it. I’m also guessing my Mom does too. Sharing it with others so you can see what we think about the f-word.

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.

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!!!

Getting married when a sibling has autism

I think, until less than a year back, I wasn’t sure (because of many reasons) whether I would ever get married.

Karan’s autism is such that it is unlikely he will ever lead what is considered a full, normal life and will need to be cared for, for the rest of his life. My mother and I are not interested or will even consider sending him to a residential care centre; it’s completely out of the question. Karan stays with family. So when it becomes impossible for my mother to take care of him, it is up to me – as his one and only sibling – to be his parent. I admit, even though right now I’m not his regular caregiver, I feel like I have my first child already.

It’s not a responsibility I grudge. I’d considered a long time ago whether I would marry because that would mean finding a man who was comfortable and accepting of Karan. I had heard enough horror stories about this: a woman my family knew had a tough time finding suitors because every time the nugget of information came up that her sibling had special needs, the parents of the man swooshed in and shook their heads. No doubt the prospective suitors were conspirators in their refusal too, but I think some men can be amenable to the situation while older generations who are comfortably ensconced in their disgusting belief that “special needs” is a dirty phrase step in.

Here’s the thing: I understand fully well the implications of marrying into a family that has special needs. But then again, I could reject you for having cancer in your family, you for having heart problems floating in the fringes, you for arthritis and you because of diabetes. When it comes to rejecting a proposal, there are a million reasons to say no.

And yes, if a man cannot accept my brother, it’s a deal-breaker. I’d rather live alone caring for Karan than live with someone who spurns him, thank you very much.

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.

Would you stand up for a special needs person you didn’t know? via @AutisticHelper

via autistichelper.org

I spotted this video yesterday on AutisticHelper.org (from Twitter, via @cookiemonster82) and started sniffling and shedding a few tears while watching.

Edit: The video seems to have been taken down, but you can view it here

Karan’s had to deal with similar verbal outbursts and non-verbal glances of disgust. And it’s not like he can respond, being non-verbal and blissfully unaware (as far as we can tell) of insulting looks/words that come his way. Mom and I usually blast whoever it is if they say something, and throw back equally dirty looks if we get those.

Would you speak up for a special needs person, or stay quiet like some of the people in this video who thought it wasn’t their place to get involved?

On my part, I’d urge people to get involved. It raises awareness and no one deserves to be treated with disrespect. No one.