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.

Do you think autistic children know what death means?

That’s a question I asked myself again and again and again when my Gappa (my mother’s father; I call him Gappa as my child-self couldn’t pronounce Grandpappa properly and the name stuck) passed away last year.

Did Karan know, or understand that his grandfather was no more?

Death is a difficult concept for me to get around as well. The answers of what happens after people die are thrown about by religions, asking us to just accept what they say: Heaven, hell and what-have-you. Abstract concepts, but nothing real. If I have such a hard time understanding it, obviously it’s hard for him.

But what I want to know is, did Karan understand that his grandfather was not coming back? Did he miss him? Did he ever think, oh I wonder where my Gappa is? At the funeral, Karan was a gem – didn’t trouble us at all. Almost as if he understood this was serious.

My Dadi (father’s mother) is currently breathing only because she’s hooked up to a life support machine. Karan has interacted with her only on family vacations to India and when she’s visited Dubai. He hasn’t gone to India in many years, because it’s a nightmare getting him on a plane, and travelling with him is perhaps do-able if my mother and I have male help. For one, Karan is massively huge for his age (I have found out that he’s much taller than me now and he’s quite hefty too), and it’s very hard – although not impossible as my mother and I have found – to take him to a female toilet when he wants to go, so a male presence has been a must for the last few years.

Anyway, he’s normally wary of new people, but usually by the end of my Dadi’s trip – or ours there – he has warmed up to her (yup he had to go through the warming up process every time). The life support machine will be switched off in a few days, once my father gets there, once I get there.

We can tell him all we like about my Dadi, but will he get it? Can he comprehend it? I know he misses people if they’ve been there constantly in his life; it’s certainly the case with me. He misses me, judging from what my Mom tells me.

Does he know what death means? I don’t think so, and I don’t know if that’s a blessing or a bane.

Teething troubles with Karan

Guest post by Adita Divecha, Karan’s mother

One of the problems I face is that Karan does not like to open his mouth when you ask him to. This was quite a problem when his milk teeth were falling – some have still not fallen. When he feels the tooth is loose, he tries to pull it off with his fingers and keeps on fiddling with it. He makes his face, clothes, the sofa and the bedsheets all bloody. He does not allow me to check his mouth and holds it tightly shut. And he does not cry.

Sometimes he has put pencils or crayons in his mouth and its quite difficult to take them out. I have been bitten a few times while trying to take things out of his mouth. Right now, he is getting a new molar but the old one has not yet fallen. He was biting down on the right side of his mouth and grimacing so I thought he had hurt himself there or perhaps had a blister. After coaxing him for many days to open his mouth slightly wider, I have found that he is getting a new tooth except it is coming out in his palate on the right side next to the molar which has not yet fallen.

Something will have to be done to ease his discomfort. He is of course not going to sit in a dentist’s clinic and open his mouth to let the dentist check and do something about it. I have been told that children like Karan are usually taken to a hospital. Their teeth are checked and x-rayed and then worked on usually under anaesthesia as they refuse to sit in the chair, open their mouths and keep it open for the dentist to work on. I am sure that other kids also don’t like going to the dentist but with special kids like Karan it is difficult and different.

“I have Invisible Disabilities”

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This is one of the postcards from the August 1 2010 PostSecret update.

When I saw this, I thought of Karan. His autism is invisible. It doesn’t show itself on his face, his limbs … there is no outward flashing sign saying: “Something is different!”

Which is probably why when we go out somewhere and something upsets him and he reacts, people think that it’s just another bratty kid misbehaving, with a family who doesn’t know how to teach him manners.

But wait a minute… look carefully people.

That 5-foot 5-inch tall boy you see towering over his mother and now his sister (but only by a few cms, I assure you!) is crying or screaming in fear/discomfort, not because he’s interested in acting up. He’s stuffing his fingers in his ears because he’s scared. Not because he’s trying to be funny. He’s jumping on the balls of his feet because rocking makes him feel safe. He’s grabbing my clothes and Mom’s clothes to be closer to us because he doesn’t know how else to show he’s upset. He might even bite us because he’s frustrated.

Not because he’s badly behaved.

Think about that the next time you see someone struggling with their child in a mall, a park, a restaurant.

The next time you point at my brother and tell your child/partner: “Look at that kid, his parents can’t even handle it” or say something to the effect of how weird he is, don’t blame me for doing what I always do: walking up to you, giving my best dirty look, and asking you if you have a problem. And then you can do what you always do: shake your head and slink away like a coward.

Don’t mess with people who deal with autism or any kind of special needs every day. We’re stronger than you and we sure as hell don’t care what people think of us.

Waiting for him to call me Mom

Guest post by Adita Divecha, Karan’s mother

My son Karan loves it when I say ‘Who is the most handsome boy in the world? That is my Karan’. At least I think that is the case because whenever I say this, he gets very excited and starts rocking from side to side with a huge grin on his face. He is 14-years-old but is still non-verbal… he just makes a few babbling sounds. He has become more vocal than before with the sounds going from ‘aaah’ to ‘oooiii’ to ‘vivivivi’ and ‘didididi’.

His attention span has also increased. Earlier he would never look at anything or anyone for a long time … even his stare was a vacant one but now it has become meaningful and also lasts a longer time. How I wish he would just say ‘Mamma’ or even ‘Ma’!!! I am waiting anxiously for the day when I hear this word from his mouth.

There are many things we take for granted but those very things had to be taught to Karan so that he could understand and do them. I still remember he used to be terrified of playing with balls. The moment I would throw or roll a ball to him, he would start screaming. Devina, my daughter, and I spent hours sitting and rolling and throwing balls to him until he stopped his screams and learnt to play with the ball. And now the ball has become his favourite toy; actually the only toy he loves.

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He was afraid of strangers, of going into a shopping mall as he could not tolerate the noise and the crowd. He is still wary of crowds and gets irritated with the noise but now manages to walk around a mall or supermarket for about an hour. He goes to a special needs school and it has helped him blossom. I get a little afraid to take him anywhere too crowded because if he gets upset, he has a tendency to grab my clothes. I am used to this but if he grabs somebody else, I don’t know how they will react. I suppose it would be normal for them to be upset so I prefer not to take a chance.

Also, having a child with special needs has really shown me what people are like. People can be very cruel and hurtful. No one can know my pain or understand it when they dont go through it themselves. I am just trying to do all I can to protect my child from them and frankly speaking, don’t want to have anything to do with such people. And it’s not only strangers who can be cruel but also people you know. And then there are those people – strangers and acquaintances who are so kind and supportive that they renew your faith in humankind.

Karan did not understand how to chew his food; he would just swallow and then choke if the morsel was big. I had to mash his food and feed him. The day he finally understood how to chew and eat with a spoon on his own was a great achievement for us and we could not stop shouting with joy. Of course even now he does swallow rice but chews any finger-food like grilled pieces of chicken or french fries or biscuits.

He was afraid of sudden loud noises…still is but does not react the way he used to earlier. I remember when he was just 3 or 4-years-old and I was walking on the road with him in my arms, a car passed by honked loudly. He was so terrified that he pushed his face into my shoulder and sank his teeth into it and bit me really hard. I could not scream as I did not want to scare him so just kept quiet until he let go. My shoulder was so painful and I had a real beauty of a scar …all black and purple…for a few weeks. Nowadays if he hears a sudden noise, he just grabs my clothes if he is near me, I guess just to feel secure.

I am amazed at his capacity to just love us unconditionally. He has taught me so much. Patience…a virtue I had very little of. How to be strong in the face of adversity, how to be resilient, how to just love, love and love. I am glad he is in my life and would not want to change him for anything. He is my life and I do want him to improve and be able to take care of himself ¬†and I hope that one day he will.