Thursday, October 10, 2013

Discovering Brotherhood

Oliver's growing confidence and independence with his typing has brought so many new dimensions to our life together. I've started thinking in terms of life Before Typing and After Typing.

 I remember seeing an interview with a mother whose daughter had learned to type and she tearfully said: "We met our daughter that day." Hearing her say this made me feel deeply conflicted. I already knew my son. For years I held fast to the belief that communication was so much more than stringing words together. There is something beautiful that happens between two people who cannot rely on words, something that is full and complete on it's own. Those who have always relied on language cannot fully understand how tuned in to another person you become when you are looking for physical nuance and meaningful gazes. It is all encompassing. And yet, typing has undeniably allowed a way of knowing Oliver that just wasn't possible before. As the days pass I understand what this other mother had meant. Our days are filled with getting to know Oliver.

Last week we downloaded and started listening to "The Reason I Jump," written by Naoki Higashida, 13 year old autistic boy who types to communicate. The Introduction to the book was written by David Mitchell, the author of Cloud Atlas. (You should get this book. And if I can't convince you, then watch this interview with Jon Stewart and then go to audible and download it. It's wonderful.)  Each day it has become our habit to listen to bits of it whenever we take breaks from whatever school work we are doing. It has fostered lots of questions from Sami and dialog between he and Oliver.

It would be an understatement to say that the relationship between my two boys has deepened since Oliver began typing a few months ago. For the first time in their lives together they are creating a dialog between themselves rather than using me as a go-between.

Earlier this week Sami suggested to Oliver that he should write a book like The Reason I Jump. Then Oliver replied: "We should do it together."  Sami quickly changed his mind though because, as he pointed out, "I'm not as good at typing as Oliver." So instead they decided to make a series of videos. This led to a whole slew of electronic disasters but lots and lots of wonderful dialog and, for the first time ever, they were working together on a common self-directed project. This probably goes pretty high up on the list of things that I never dared to hope for.

I would like to link here to a video produced by the Oliver and Sami team, but that might be a long time coming as they are running into a series of complications, both electronic and emotional. Sami started the project, I think, expecting that he would do all the questioning. It came as a surprise then that Oliver has followed each answer, patiently spelled out letter by letter, with a question for Sami. It has come as a surprise to me that with his questions Oliver has taken control of the direction of the conversation as naturally as if he had been doing it his whole life. The questions he asks Sami tell as much about how this boy's mind works as his answers do and they blow apart every single stereotype people might have about a person so challenged by autism. Often they are so piercing that Sami turns off the camera before he can answer and I go running for a tissue.

The most beautiful thing about this dialog though, is that I see how it frames their unique bonds of brotherhood. Autism has perhaps shaped their relationship but it is no less fully lived than any other sibling relationship. They have their own set of rules but the bonds are universal.

I'm not sure what will become of their video project, but in the meantime, if your child with autism has a sibling who would like to understand his brother or sister better, consider listening to The Reason I Jump together. Because it is written by a young boy, the language is accessible to children and the topics covered are probably ones that are of most interest to a sibling.











5 comments:

  1. The book is on my kindle, just waiting for me to read AND to pass onto my first born! I love that typing has opened up the world for you all. My 2nd born also knows his way around a keyboard, although he is unable to communicate like your son... but that is okay. :)

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  2. Oh, wow. I am going to go get that book today. I love this snapshot into your two boys, how amazing. Really hope that video happens and you do link it here :) xo

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  3. I hope you enjoy the book, Bright Side of Life! All three of us are listening to it together and I feel there is something important there for all of us! Cheers to your first and second born!!

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  4. Yes, Kal! Get it. The writing is remarkable and the insight is invaluable! Tell me what your your boys think if they listen!

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  5. Im getting the book and can't wait to see the video. I think that is something Brian would love to be able to do with Andrew. Will have to share the book with him and the video eventually

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