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.