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Noticed this video clip on the Autism Center of America's blog. An intense debate going on there.
Really interesting.
Friday, 5 February 2010
Son-Rise Start-Up London: Final Day
I finally got the chance to update my blog. This week has been a whirlwind of sleepless nights as I struggled to clear my backlog of work that had accumulated during the past week we were in London for the Son-Rise Start-up.
Anyway, the final day of the programme was about sharing, Q&As and a round up of what we had learnt.
Top on the list of learnings from the course for me was the change in attitude. Not to be sorry. Try to be genuinely happy and not to be affected by the situation. When ever I am faced with a situation which is not going my way, I remember William and the question "So what?" and try to remain positive, though that can be hard sometimes.
There was one session where we had to write a letter to our children, pouring out our hearts to them. It was a very emotional. I tried my best to hold it but in the end the tears just ran down my face without me even realising it.
I didn't want to share my letter to Imaan with the rest because I was afraid that the tears would start falling and it did when I listened to the other parents. Here is what I wrote:
We made loads of friends and am still in contact with several of them. The volunteers were great and we received loads of valuable advice.
Some people emailed me asking how much the whole programme cost us. Actually 80% of the total cost ($2500) was funded by Caudwell Children. That seems like a lot of money - in fact it is a lot of money and we might not have attended the programme if we hadn't received the scholarship but it was worth every penny.
The guys from Caudwell were there as well and they received a standing ovation - they deserve it.
Anyway, the final day of the programme was about sharing, Q&As and a round up of what we had learnt.
Top on the list of learnings from the course for me was the change in attitude. Not to be sorry. Try to be genuinely happy and not to be affected by the situation. When ever I am faced with a situation which is not going my way, I remember William and the question "So what?" and try to remain positive, though that can be hard sometimes.
There was one session where we had to write a letter to our children, pouring out our hearts to them. It was a very emotional. I tried my best to hold it but in the end the tears just ran down my face without me even realising it.
I didn't want to share my letter to Imaan with the rest because I was afraid that the tears would start falling and it did when I listened to the other parents. Here is what I wrote:
Dear Imaan,
You have changed our live in such a beautiful way. Your smiles and laughter makes my day come alive after a hard day's work. We are so lucky to have you. Otherwise our lives would have been so different - so boring.
It has changed me for the better. I have become a better man - a real man. Now, I see the World is such a beautiful place.
You are so innocent and I am sure that you will remain your beautiful self forever. I love you so much and we will face the future together.
I wanted to end here but the words don't stop. There is so much I want to say. I can't wait for you to talk back.
I was sad and felt hopeless. Now I am a different man. I am optimistic and have bright hopes for the future. I see you as a blessing in our lives. You have made it so much richer, so much more beautiful. I can't wait to get back and get a glance from you - a smile from you.
Love,
Baba
We made loads of friends and am still in contact with several of them. The volunteers were great and we received loads of valuable advice.
Some people emailed me asking how much the whole programme cost us. Actually 80% of the total cost ($2500) was funded by Caudwell Children. That seems like a lot of money - in fact it is a lot of money and we might not have attended the programme if we hadn't received the scholarship but it was worth every penny.
The guys from Caudwell were there as well and they received a standing ovation - they deserve it.
Thursday, 28 January 2010
Son-Rise Start-Up: Next 3 days highlights
I can't believe it but tomorrow is the last day of the Son-Rise Start-Up programme in London. We have made several new friends. One of the thing we realised in the past 4 days is that even though all of us have autistic kids with their unique characteristics, many of us share so many similar experiences and issues. For example, Bryn (or was it Michael) mentioned something about our kids going over and suddenly taking food from stranger's plates in restaurants - something that we have experienced a couple of times, and we saw several couples looking and smiling at each other.
The second day we found out what it was like to have stims or "Isms" as the guys from Son-Rise put it. A lot of people thought it was comforting, relaxing, one lady said that it made her headache go away, I thought it was hypnotic.
The Third day I missed the morning session because I had a seminar in the University but my wife was around. I later joined her after lunch and we talked about changing our attitudes - to be unrealistic, optimistic about our kids. We discussed what we would things we would most like to achieve with our children in the next 6 months. Also helpful were the suggestions and comments from other parents about the stuff we gave the lowest points - ones which we felt would be difficult to achieve.
Just realised that as I write this, it's past midnight and now the last day. Yesterday was about getting volunteers to help us carry out the Son-Rise programme - an idea that I was not really comfortable with. I mean, how do I get people to come over to our house and spend time interacting and trying to interact with our children. Now, I have some ideas how to go about it.
Looking forward to the last day of the Start-up programme here in London.
The second day we found out what it was like to have stims or "Isms" as the guys from Son-Rise put it. A lot of people thought it was comforting, relaxing, one lady said that it made her headache go away, I thought it was hypnotic.
The Third day I missed the morning session because I had a seminar in the University but my wife was around. I later joined her after lunch and we talked about changing our attitudes - to be unrealistic, optimistic about our kids. We discussed what we would things we would most like to achieve with our children in the next 6 months. Also helpful were the suggestions and comments from other parents about the stuff we gave the lowest points - ones which we felt would be difficult to achieve.
Just realised that as I write this, it's past midnight and now the last day. Yesterday was about getting volunteers to help us carry out the Son-Rise programme - an idea that I was not really comfortable with. I mean, how do I get people to come over to our house and spend time interacting and trying to interact with our children. Now, I have some ideas how to go about it.
Looking forward to the last day of the Start-up programme here in London.
Monday, 25 January 2010
First day at Son-Rise Start-Up programme in London
Took the train from Greenwich to London Bridge in the morning - supposed to reach around 9:40am.The registrations were until 10am. However, we got lost somehow even though my wife had been at the venue before. Was halfway across the London bridge when my wife decided to ask someone and we realised that we were going in the wrong direction and further away. Finally reached the venue - Glaziers hall a few minutes lat , wet and cold. Bryn had already started and we sat in the back.
What followed was several hours long inspiring and thought provoking lectures from Bryn and her husband, William, with a short lunch break in between.
One of the things I realised was how difficult it was for us to loosen up - to express our excitement. I guess a few years of stress does that to everybody. It did feel good to be able to act weird with more than 100 other people. How were we supposed to get our son to open up to us when we were getting more and more frigid day by day? Really thankful to Bryn and William for opening our eyes.
On the way back my wife and I was discussing how we needed to change - the way we interacted and behaved with the kids, with each other and in fact our whole outlook on life. On the need to be more positive, optimistic and supportive.
Definitely looking forward to day two as well as three, four and five of the programme.
What followed was several hours long inspiring and thought provoking lectures from Bryn and her husband, William, with a short lunch break in between.
One of the things I realised was how difficult it was for us to loosen up - to express our excitement. I guess a few years of stress does that to everybody. It did feel good to be able to act weird with more than 100 other people. How were we supposed to get our son to open up to us when we were getting more and more frigid day by day? Really thankful to Bryn and William for opening our eyes.
On the way back my wife and I was discussing how we needed to change - the way we interacted and behaved with the kids, with each other and in fact our whole outlook on life. On the need to be more positive, optimistic and supportive.
Definitely looking forward to day two as well as three, four and five of the programme.
Monday, 18 January 2010
About the search for an "Autism drug"
Read this article titled "The Hunt for an Autism Drug" in the online version of BusinessWeek.
This hope this results in a change in the thinking of health care professionals - I mean I hope they see autism as soemthign that can be treated and cured and not something we "just have accept and to live with".
I now believe in biomedical intervention after seeing the positive changes in my son as well as in other autistic children (based on evidence posted by other parents).
One part which I really found interesting was "President Barack Obama allocated $60 million of stimulus funds to the autism research pool and earmarked $1 billion for studies extending through 2018". Does show that the US Government thinks that this is an area of concern. I wonder whether Gordon Brown or his colleagues are thinking about this epidemic as well.
This hope this results in a change in the thinking of health care professionals - I mean I hope they see autism as soemthign that can be treated and cured and not something we "just have accept and to live with".
I now believe in biomedical intervention after seeing the positive changes in my son as well as in other autistic children (based on evidence posted by other parents).
One part which I really found interesting was "President Barack Obama allocated $60 million of stimulus funds to the autism research pool and earmarked $1 billion for studies extending through 2018". Does show that the US Government thinks that this is an area of concern. I wonder whether Gordon Brown or his colleagues are thinking about this epidemic as well.
Sunday, 17 January 2010
Toileting achievement
Something amazing happened today. We have been trying to toilet train our son for quite sometime without much success. The problem is that he doesn't communicate when he wants to go.
What we do is take him to the toilet at regular intervals and when we see some signs - like when he rushes upstairs.
However today we had a breakthrough. He was with his mother in the bedroom when he suddenly said Poo Poo. My wife called me to take him to the toilet. When I got upstairs I found out that he was already on the toilet set with his pants off (he took it off by himself) and doing his business. When it was done he had a really pleased look on his face and clapped his hands in glee. I clapped as well and praised him and kissed him.
It's an amazing feeling. Hope he continues doing it from now on.
What we do is take him to the toilet at regular intervals and when we see some signs - like when he rushes upstairs.
However today we had a breakthrough. He was with his mother in the bedroom when he suddenly said Poo Poo. My wife called me to take him to the toilet. When I got upstairs I found out that he was already on the toilet set with his pants off (he took it off by himself) and doing his business. When it was done he had a really pleased look on his face and clapped his hands in glee. I clapped as well and praised him and kissed him.
It's an amazing feeling. Hope he continues doing it from now on.
Tuesday, 12 January 2010
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