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.