Recognising “cool”

Jonathan has just finished his second week at Jazz School and it is going remarkably well. He has even accepted that he needs to practice. (phew)

One class he takes is called contextual studies and is a short version of the history of the western world, with emphasis on art, architecture and music. He also has a tutorial for this class focussed more on the musical aspects. This first section has been about “culture” and how it affects people, and how people affect culture. In the lecture they mentioned “culture shock”, which occurs when we are surrounded by a culture we are not part of, and have difficulty making sense of. It struck me that Jonathan is pretty much in a permanent state of culture shock. Everything has to be explained and analysed. Nothing “goes without saying”.

At the end of the tutorial the tutor commented that we all know what “cool” is. We can’t define it, but we know it when we see it. Well, Jonathan doesn’t. He has no concept of “cool”. When you are totally blind, with autism thrown in it’s pretty hard to tell anything from appearances. Sighted people fail to realise how much Jonathan has no concept of. Colour, light, sky, mountain, tree, ocean, most animals… Not a clue! Art? Pretty much meaningless. Architecture? I can see this subject is going to be a challenge.

Having said that, I don’t know if I’ve ever been cool. William was pretty impressed when I clocked Tomb Raider, and that made me cool in his eyes. Developing iPhone apps makes me a bit cool in some circles. Maybe I’m too old to be cool. I’m far from musically cool. Most of the people the tutor mentions in class are names I may possibly have heard of, but don’t mean anything. So I guess cool is culturally constructed.

Fortunately Jonathan feels no need to be cool. This is just as well when his wardrobe is chosen by his mother. Having said that, people have often said that Jonathan is cool. I think the fact that he is who he is, without any pretense or excuse probably makes him cool.

Jonathan starts at Jazz School

I was very glad the welcome to Jazz School at CPIT on Monday was held in a dimly lit performance venue, as the tears streamed down my cheeks and I tried surreptitiously to stop them dripping on my skirt. When the Head of Department, Tom Rainey, commented that for some of those assembled this was the culmination of years of work and hoping, he was right on the nail. (Actually that’s what set me off) Jonathan only decided about 18 months ago that he would like to go to Jazz School, and he missed out on the first application. However last year he and others pulled out all the stops and he wowed the audition panel and was accepted into the degree programme to study part-time. But Mark and I had been hoping for some time that he would one day be ready to take his musical talent further.

And now that Jonathan has been accepted I am impressed at the lengths to which the staff at CPIT are going in order for him to be successful. Jonathan will have a helper with him (support person) until he and the teachers are happy that he will be okay on his own. I will be going to some of the classes so that we can discuss them at home and help him with some of the trickier stuff. I was excited today to find out that I am better at piano scales than Jonathan is. (Mark says to make the most of it, because it won’t last for long.) Jonathan has never been one for scales, and managed to do without them until now. I think I’ve convinced him that he needs them.

Jonathan is in an ensemble made up of a drummer, guitarist, bass guitarist, vocalist, tenor sax and of course pianist. They have five tunes to master this term, and to me they sound pretty darn good already. We decided the aural training classes would be too much for him (lots of people trying to sing notes), so he will just do the tests. With perfect pitch, his ears don’t need a lot of training.

We have a lot of people to thank for Jonathan’s place in Jazz School, but three stand out. Nanako Sato is a jazz pianist and teacher who taught Jonathan at Mairehau High School in her own time for three years, and at Hagley Community College for another three. Jonathan learned so much about jazz piano from her. Nanako also had high expectations of Jonathan, so that he tried to live up to them. Margaret Robertson is head of music at Mairehau and had the good sense to employ Nanako and support her in developing Jazz at Mairehau. She also loved both my boys, nurturing their unusual talents. And Todd Jones is the head of Jazz at Hagley Community College. He took Jonathan as he was and enjoyed having him in the course for three years. Jonathan gained so much from mixing with other adults who loved to make music. There were so many others who were part of Jonathan’s progress – his fellow band members at Hagley, Annabel, Libby his tone-deaf teacher aide, Lois the piano teacher, Natalia his music therapist. Thank you!

I asked Jonathan why he wanted to go to Jazz School, and it isn’t about the music, really. It’s about making music with other people, and for other people. He loves to be part of a band and he loves to perform. When Jonathan plays in a band, he has a big grin across his face. His joy is infectious. It is his way of connecting.

In the limelight

The photo of the three of us provided for the brochure.

Well over a year ago we were asked by Autism Victoria if we would like as a family to be keynote speakers at the Victorian Autism Conference 2012. Mark, Jonathan and I would all speak, and Jonathan would play the piano. It was a great opportunity, and we took it. Though we are used to speaking in front of groups of people, this was our first gig of any size. Jonathan loves to travel and he loves an audience, so he was totally on board with it all. I too love an audience, so I was happy. Poor Mark was a little less thrilled with the opportunity, but I knew he would do just fine. And he did.

We have just returned from our holiday that we took after the conference. What with earthquakes and redundancies, this has been a challenging year, so it was good to pause and take our breath among family and wonderful scenery.

When we arrived and saw our photos and blurb in the programme along with big names like Tony Attwood and Carol Gray we wondered if we were a little out of our depth. However we also knew that we had magic formula of Jonathan’s angelic playing and endearing personality to win over the audience.

Jonathan (who has nerves of steel) opened our presentation by introducing himself and then Mark and I also introduced ourselves and talked about how we found out that Jonathan was blind, and then autistic. To give an idea of our whole family, we showed a clip of William introducing himself. Jonathan then played his virtuoso arrangement of “Swanney River”. In the background was a slideshow photos of Jonathan at the piano, going backward through time to finish with video of him twirling happily at the piano at the age of three.

We need balance in our lives, just as music needs balance.

We spoke about the need for balance in our life as a family with special needs. This included the balance between the needs of the family as a whole and the individuals. Each of us talked about having Jonathan stay away from home and giving the the rest of us a break. Jonathan played a peaceful Gymnopedie by Satie, accompanied by pictures of the family.

The next point of balance was between providing security for Jonathan, and encouraging him to try new things. The culmination of these efforts were Jonathan’s gaining of the Gold Duke of Edinburgh Award, and our journey to New York to visit the Sesame Street studio.

After “The Battle Hymn of the Republic” and photos of his adventures, we talked about the balance between helping Jonathan fit in in the ordinary world, and celebrating him for who he is. Jonathan’s final piece was an Australian Medley of six tunes, beginning with Waltzing Matilda and closing with “Advance Australia Fair”.

It is fair to say that it went well. We didn’t get many questions from the large group, but many individuals and couples talked to us afterwards and said how our presentation had helped them, and touched their hearts. There will be a copy of the presentation available in mid-September if anyone wishes to buy the DVD.

We learned a great deal from the experience. We worked together well as a team. (Mark and I have a joke that we are just Jonathan’s staff – looking after his physical needs!) We were privileged to be able to share some of what we have learned over the last 23 years. Most of all I feel it was a gift to be able to help some other families to see that there is light at the end of the tunnel. There is no doubt that at times I thought the trials of raising Jonathan would never end, and it all seemed too hard. But now we are having these wonderful experiences that connect us with families whose challenges make our own seem minor.

Mark and I also attended several of the other sessions when possible and learned a great deal from the presenters. We felt rather guilty at times at the things we had failed to do as parents. I think we will include that if we are invited again to tell our story.

Nicola and Jonathan appear on ABC News Breakfast

The highlight of the trip for Jonathan was appearing live with Tony Attwood on ABC News Breakfast, hosted by Karina Carvalho and Michael Rowland. Jonathan loves television, and though we have appeared several times, we had not done live before. He did really well, even correcting Mike when he got Jonathan’s age incorrect. I managed to lose track of the question in the middle of my answer, but it didn’t really matter.

There is a possibility that we will be asked to speak at another conference. The parents who spoke to us afterwards are keen for a return appearance. I’m glad we didn’t realise how little we knew when we accepted to speak in Melbourne. We know very little about Autistic Spectrum Disorder. I don’t think we have any right to give advice to anyone about how they should raise their child with or without special needs. But we do know our own story. We do know that it was very difficult at times, and there were times when we would very much have preferred to be ordinary. We also know that we like where we are at present. We still have many things to work through, not the least being getting Jonathan to live independent of us for at least some of the time. (We actually like being his servants.) But our life is ok, and I think that is a message that many parents are greatly relieved to hear.

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.

Many good ways

Jonathan, at about 2 years old, dancing in the kitchen

Raising children is pretty tricky really. Despite wanting to be a mother all my life, when I managed to produce our first child, William, I really had no idea what to do with him. Penelope Leach became my new best friend as we struggled with sleeping, feeding and crying. (and looking after the baby). I liked that she didn’t make the baby the enemy that required beating into submission, or at least the occasional truce. We learned as we went. I’ve heard it said that “The first child, like the first waffle” should be thrown away.” Though I would hesitate to throw WIlliam away, and my husband, a first born, is a pretty acceptable human being, I understand the sentiment. As new parents we were certainly making it up as we went along.

Consequently I felt a little less anxious about raising a second child. We’d been through it once, and with WIlliam’s health problems had experienced a range of issues. William was two years old, and walking, talking and pretty fun to be with. Surely a second child would be more straight-forward.

Silly me.

Jonathan’s delivery was worse that William’s (which had been no picnic), as he decided to come face first. But he didn’t need an incubator, and his face recovered quickly. He always had a beautifully shaped head. And, joy of joys, he didn’t have excema or any allergies. He fed well and was gorgeous. His eyes did some funny things, but we figured/hoped that was just being newborn. The first six weeks were pretty idyllic really.

How we found out he was blind is a story for another day. We will now fast-forward a few months. We are starting to come to terms with having a child out of the ordinary. But all the rules have changed. Blind babies do things differently. And being the parent of a blind child requires some extra skills and seems to require super-powers. I search through library books and try to find out what we need to do to parent our Jonathan. It is a daunting and worrisome time.

Then one day I am in the University of Otago library, in among the books on parenting. I find one produced by the magazine, Exceptional Parent. I open it up and start reading and find the sentence that changes my life: “There are many good ways to raise children”.

There are many good ways to raise children. That is it. There are many wrong things to do, but there isn’t one good thing that we have to find out. If I do things differently from someone else, we can both be right. I am freed from the need to find the one right way to raise my sons. I would never say that all we have done and continue to do is the right way for anyone else. But I do know that most of the time we did the best we could under the circumstances. Given the time again, there are things we did that I wouldn’t do, and things left undone that I would attend to. But mostly it was ok. We were not the perfect parents to William and Jonathan, but neither were they perfect children. But as a family I think we have done ok.

Jonathan learns to lie, cheat and deceive

It is hard to know where to begin, writing about our never ordinary life. I won’t be working through our lives in chronological order, but rather will jump around at whim.

Let me tell you about one of my favourite episodes.

The week when Jonathan learned to lie, cheat and deceive.

Jonathan is extremely honest. I really like that about him, as I always know where I stand with him. Once there was a lady at church who sang loudly and enthusiastically, but with little regard for the tune as it appeared in the hymnbook. It did encourage the rest of the congregation to sing a bit louder in self-defence, but I think it caused my poor children pain. Once we were sitting waiting for church to begin, and Jonathan heard this woman talking behind us. He turned around and announced to her, “You shouldn’t sing, it’s too hard for you.” Fortunately the woman in question was also a little deaf and Jonathan can be difficult to understand, so she was spared his helpful suggestion. I shushed him up and changed the subject.

This directness is refreshing, and he has now learned to temper it with tact. There is another woman from church, visiting from America. She is about ten years older than I, and an accomplished pianist and music teacher. She adores Jonathan, and it is mutual. One day I said to him – “I think you like Sister S more than you like me! Who do you like better – Sister S or me?” I was delighted that he was forming attachments to people. His response was wonderful – “I don’t want to say because it might hurt your feelings.” Very sweet. Point to Jonathan.

However when he was younger I worried that this total lack of guile made him vulnerable to dishonesty in others.  (William insists to this day that Jonathan had a bit more guile than we thought!)

My fears were allayed in a single week when Jonathan was eleven. His teacher reported to us at an IEP (Individual Education Plan) meeting that she had caught Jonathan cheating on a spelling test. His book was in his bag, and he was reaching into the bag which was hanging on his chair, and reading the braille words with his fingers. He blushed when she asked him what he was doing. He knew he was cheating.

It was at this same meeting that Jonathan appeared at the door looking very pleased with himself. He had told the substitute teacher that he was supposed to come down then. He explained to us that Daddy could take him home now so he could watch Open Sesame. I introduced him to the other people at the meeting, then told him he could stay there and say nothing, or he could go back to the classroom. He would have to tell the teacher that he had been mistaken and come back at the end of school, when his father would take him home. Jonathan took his bag and his cane and went back to the classroom.

The following day Mark and I had planned to spend the night at a hotel to celebrate our wedding anniversary. William and our home-stay daughter would stay with my mother, and Jonathan was going to his fortnightly Caregiver. At about 2pm I checked my voicemail at work and found a message from the school nurse saying that Jonathan was in the sick bay and looked as if her were going to vomit any minute. “Noooo!” I cried to the room, as I saw our night away evaporating.

I rang the school and found that Mark was already on his way there. But I found I couldn’t concentrate on my work and decided to go home to see if I could help Mark. He’s not good with vomit. All the way there I was trying to think what I should do about our night out.

Halfway home I met Mark coming the other way in the other car. We stopped and swapped cars. Jonathan was in the back, looking pretty normal really – perky even. Mark told me that Jonathan’s first comment had been to ask if Mark had his “going away” bag. I started to feel relieved. I drove off with Jonathan and asked him how he was feeling. “Oh”, he said casually, “I was just pretending to be sick.”

I was so relieved I laughed out loud and couldn’t be bothered working out the most suitable response. He had learned to lie, but his follow-through clearly needed work. The little toad just wanted his weekend to start a little early. I did make him apologise to the teacher and the nurse on Monday, and Mark and I did have a nice little break.

One of my very favourite movies is “Galaxy Quest”. In it there is a race of aliens, Teurmians, who are completely honest and do not understand deception. They have been watching old television programmes from earth and call them “historic documents”. (The programmes include “Gilligans Island” – “Those poooor people!”) The Thurmians are totally vulnerable to the dishonesty of Sarris, the leader of another race who is trying to conquer them. Knowing this movie so well, I was pleased that Jonathan did have a little deceptive streak.

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.