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 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.
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.