Uncertainty and order

People generally don’t like uncertainty. Weather forecasts, hurricane warnings and geological models exist because of uncertainty. People eat at McDonalds. Horoscopes endure.   Gamblers have a love-hate relationship with uncertainty. The insurance industry exists to lessen the financial penalties of uncertainty. Mathematical models are developed to try to take uncertainty into account. We all want to have some idea of what is going to happen. It is about control. I’m writing a post in my other blog about the mathematical and personal aspects of uncertainty.

Jonathan on his way to sports day at Mairehau High School.

One of the more obvious aspects of Autistic Spectrum Disorder is the need for order. Jonathan has always liked things to happen when they are supposed to happen, for as long as they are supposed to happen, and with plenty of warning. For a blind child, needing order serves some very important functions. Fortunately (and possibly this is no coincidence), we have had a fairly ordered and predictable lifestyle as a family. He would eat his breakfast at the same time everyday and have a bath on certain days. I think part of his love for television is that everything happens when it is supposed to, and for exactly the correct amount of time. Jonathan preferred secondary school, with set times for certain subjects, to the more freeflow approach of primary school where he never knew when this particular activity he was enduring would end, and another begin. Jonathan ate the same food every day for about eight years, and it really isn’t a lot different now. One of my great achievements in life was getting him to be able to eat at McDonalds without taking a lunchbox. (More on that in a later post)

The other day in church one of the speakers was going over time. Jonathan leaned over and asked me, “Doesn’t he have a watch?” There was a clock in plain view, but the speaker was oblivious. When Jonathan was asked to speak for seven minutes, he wrote and practised his talk so that it was seven minutes. We needed a musical piece about three minutes long. Jonathan produced an arrangement exactly three minutes long (instantaneously). When Jonathan is in the class, it does not go over time without comment. Jonathan knows exactly when things should happen, such as the days the rubbish bins go out, when Mark has meetings, and if the washing needs to be brought in. It used to be that if he didn’t hear the noise of dinner being made at 5pm he would come out and ask me, “Shouldn’t you be in the kitchen?”. I chose to see it as endearing, rather than annoying.

I’ve tried to imagine what life was like for Jonathan as a baby and young child. Everything happened suddenly for him. Because he was blind, he didn’t see people arriving and leaving, but rather they were “here” or “not here”. His life was a series of discrete events, rather than a continuous stream.There were no visual cues, such as seeing people collect up the swimming togs before heading out to the pool. For this reason we learned to tell him what was happening. Now he uses aural cues to the extent that he often has a better idea than we do of what is happening.

In all things balance is important and we have tried to balance making his (and our) lives comfortable by keeping things ordered, while at the same time pushing at the boundaries and helping him to cope with the unexpected. It is easier to encourage new things when there is a base of security from which to work. We learned to warn him ahead of time if things might be less structured. We learned that sometimes it just wouldn’t work – that a surprise activity would be met with such opposition that it was impossible to proceed. We put time limits on things so that he would know when a possible ordeal would be over. Jonathan trained us pretty well really.

Jonathan preparing to play to the cast of Sesame Street

Jonathan preparing to play to the cast of Sesame Street

So it is interesting that Jonathan likes to travel. We were fortunate to be able to visit New York and the Sesame Street studios in (I’ll just check my dates with Jonathan) October 2009, when Jonathan was twenty. You don’t get a lot more uncertainty than in a foreign country. But Jonathan was fine. I think he decided that the end justified the means. We didn’t push him too far, allowing him the odd day at home watching cable TV. He loved the US food, where you can have three side dishes without a single vegetable. He loved the subway instruction, “Stand clear of the closing doors please” at every stop. He didn’t even mind the long haul flight from Auckland to Los Angeles. It was night time so he slept. Then he ate breakfast, went to the toilet and we were in America. Would that I could do that!

I adore Jonathan. I love his love for order. He makes me laugh everyday. He is a quiet orderly presence in our home, keeping things ticking over in an timely fashion. I understand him now, and know how to help him cope with the unexpected. I know it used to be very challenging, but it is hard to recall the details. I think there is a rosy glow descending over my memories of his childhood, where spontaneity was close to impossible. But I think that’s the way it is supposed to be.

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Jonathan introduces himself

Jonathan goes to the gym three times a week.

(At the beginning of the school year in February Jonathan started a course at CPIT. He sent this email to his teacher introducing himself.)

My name is Jonathan Petty and I’m blind which means I can’t see with my eyes. I read and write using braille and I use a computer called Braille Note and a Desktop Computer called Jaws and they both talk.  I go to the Gym two or three times a week which is located at Burwood Hospital. When I’m at home I like to listen to any kind of TV programmes including classics, children’s programmes and (one of my personal favourites) game shows, because its fun and its for everybody to enjoy (young and older like).

Sometimes my mum Nicola or my dad Mark go to the Canterbury Public Library which is now re-opened because of an earthquake we had last year. But when places like the Library is re-opened there are still things that needs cleaning up from the inside. But mainly the reason why I like going to the Canterbury Public Library is because there are something that you can’t borrow, but you can read it there anyway. And its called Listeners. And its not the articles you can find, but it also includes the TV guide. And that’s what I like about Listeners, because it has past programmes that maybe you remembered watching from along time ago. Like Its in the Bag, Krypton Factor, Country Calendar and course Sesame Street.

And speaking of Television I was on there a few time. In 2007 my first TV appearance was on 60 Minutes (NZ), then one year later I was on New Zealand’s Got Talent. And mostly I made a few appearances on the program that’s made especially for disability people like me called Attitude which is on Sunday Mornings on TV One. The first one that I was on was just a 7 minute segment in 2008, then I played the Piano for the Attitude Awards both for 2008 and 2009. By the way the piano is an instrument I play. Then in October 2009 my mum, dad and I and the Attitude crew went to New York to meet some of the characters from one of my favorite programmes which was Sesame Street. And that was my dream, because Sesame Street was 40 years old then and I wanted to congratulate them. And believe it or not the people of Sesame Street kindly recorded us as part of the program, but only the beginning part which is when my mum and dad and I came past a couple of Sesame Street characters named Elmo and Telly and they said hi to me and they were playing basketball. And speaking of Sesame Street it came back to New Zealand early this year (if you didn’t know that). So if you want to find the ones that had me on I’m on episode 4219.