A mother’s thoughts on Autism Awareness Day

Guest post by Adita Divecha, Karan’s mother

I have not been able to put down my thoughts for a long time now. Don’t know why. Something always came up, or my thoughts were always muddled, or I was just being plain lazy. My daughter Devina is always encouraging me to write more and I keep on procrastinating. So anyway here I am trying to say things which I hope make sense.
Last month my son Karan celebrated his 16th birthday. He cut his birthday cake with his friends and teachers at his school and enjoyed himself. His teachers took photos of him cutting the cake, even smeared his face with cake and he did not get upset. As I watched my tall (he towers over me) and handsome son walk with me to the car, I realized how much he had progressed over the years. Of course there are still many more things to be achieved but we will get there soon.

Also, to digress a little, I realized suddenly after so many years that Karan would have been in the 10th grade if he had not been the special child that he is. I mean for all these years I have never really thought about this. And also even now I realized this just because my niece, Ananya, who is 4 months older to Karan, was having her 10th grade exams. And I was relieved I did not have to go through the tension I felt my sister-in-law Madhavi was going through because of her daughter’s exams. I don’t even know if I am right in feeling like this.

I think my chain of thoughts are still muddled. I was talking about Karan’s progress. We tend to celebrate every little thing that he achieves. I still remember how he used to scream when we would throw a ball to him. It is now a thing of the past: he loves to dribble the ball and throw it into the basket now.

He has mastered the concept of drinking with a straw after a long time. He just would not understand how to suck, something we just take for granted. So this was quite an achievement.

And the greatest achievement of all…He is toilet trained but was still wearing diapers at night as he still did not understand how to go to the toilet at night if he needed to. Then suddenly one fine day – I mean night – he suddenly figured out he just had to get up and go to the toilet if he needed to and that there was no need to wear a diaper. How we screamed in happiness. Now I am just waiting for him to achieve the next step of being able to clean himself. I am sure he will achieve this too.

He loves to paint and his brush strokes are getting better and better and he really looks forward to and enjoys his weekly outing to the START Workshops he attends. Also he enjoys beading and so likes to sit and make necklaces and bracelets. We have also introduced him to the iPad which I hope will improve his communication skills.
He likes to sit in the front seat of the car while going to and from school. He puts on his seatbelt as soon as he enters the car and then puts on the music. He does not like me talking on the phone so if it rings he puts his hand on my mouth, as if to say “No talking”. Very smart boy.

So on Autism Awareness Day, I ask you to educate yourself a little bit more on this enigma called autism…now that the latest figures are showing 1 in 88 children have it, it’s highly likely you will know someone who is autistic.

So go on, I’ve laid my thoughts bare for you…ask me anything you want to know. Perhaps with spreading knowledge, will I get acceptance for my smart son.

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Awareness is not Enough – What Autism Means to Me (The sibling’s view)

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me…

Echoing what my mother said…it’s a way of life. I don’t know if there is any other way to be, any other way to live. Families that go on outings, plan weekend trips together, go for movies, dinners, lunches…it seems surreal to me. It seems like a completely different world. And I’d imagine that’s what my world seems like to you. I grew up with autism. It is my life now. Some pictures from our growing years…

Italicized open letter courtesy Autism Understanding and Acceptance

Awareness is not Enough – What Autism Means to Me (The Mother’s view)

Guest post by Adita Divecha, Karan’s mother

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me..

It’s a way of life. Everything in my life is centred around it. It dictates what I can and cannot do. Because of it, sometimes I do feel that I don’t have a life. And it’s not just me…it’s Karan as well. Does he really have a life? He can’t do so many things other 15-year-old boys do, he doesn’t have fun the way they do. It’s limiting. When I look at other 15-year-olds, I feel bad for him because he is, in a way, missing out. It’s not so much about me than it is about him. Normally you’d think when your child is 15, they can look after themselves and you’d be free from certain responsibilities. But my son is going to be a baby, mentally, all his life. Hopefully he will be completely independent in a few years but he will always be a child compared to other people his age. Your child has not grown up. Karan hasn’t grown up. He will not really grow up. It makes me sad to think that he isn’t truly experiencing everything as he should have done. But for me, it gives me constant stress because all I’m worried about is what will happen to him when I am not there. It stresses me out to an extent you will not believe.

Yes, autism has taught me to be more patient, to be strong, to be loving…more than I could have ever thought. It also helps in the sense that you come to know what people are really like; faced with autism, some people turn out to be nasty in a way.

It’s very easy for people to give talks and seminars and tell me to go out and do this and do that. Most of the time I want them to just shut up. It’s easy to give talks and lectures, but it is not easy to actually do what they say.

But Karan is my sweetiepie…the apple of my eye. He is so loving…so loving. The thing that amazes me is that Karan does not understand how to hate or to dislike anyone. He’s always smiling, trying to hug you or kiss you. It always amazes how he never gets angry with anyone. How we get angry with people, suddenly hold grudges. People with autism are so loving; Karan is a sweetheart. I’m thankful he is who is. He is my blessing. Because he is never going to lie to me, he’s never going to hate me, he will never break my heart. He is what he is…he will never be two-faced. Other parents have so much else to be worried about with “normal” teenagers, none of which I have to contend with.

You know, he loves it when I tell him he’s a handsome boy. A “normal” 15-year-old would probably cringe at his mother being so affectionate. But my son will always love me and want to be close to me. We will never grow apart.

Mum_and_karan_poo_20110402000418_pola

Italicized open letter courtesy Autism Understanding and Acceptance