Dan Turns 21

Three cakes. That’s how you celebrate turning 21 – Dan style.

It’s a momentous event when your firstborn turns 21. Dan knows when his birthday is. He can’t tell me in words but he can find it on the calendar. He has this unique ability to know exactly what day and date it is. Dan’s grandmother has a perpetual calendar and sometimes she forgets to turn over the pages. It doesn’t matter how many days or weeks it has been, Dan will turn over the pages until it’s on the right date. He is always right.

In the weeks leading up to Dan’s birthday, we prepared him for the event. How old will you be? This question is usually met with silence, so then we ask … what number will you be? After a few times, he learned that the answer was a very loud 21. I’m not sure if he quite understood the traditional significance of turning 21, but he knew it was a big deal.

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The first 21st celebration was in Adelaide. Since my side of the family are spread out across Australia, it is difficult for us all to get together in the same place, at the same time. As we were gathering in Adelaide for my Dad’s 80th birthday, it made sense to celebrate Dan’s birthday too. His first birthday cake was a lovely rainbow sponge. I was amazed at how light and moist it was, even with all the layers of colour. Dan even had a few early birthday presents: a puzzle mat and a 1000 piece puzzle of a lawnmower race, which was a bit like a Where’s Wally picture – thanks Uncle Dave!

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Back in Toowoomba, I organised a cake for Dan to have with his friends at Yellow Bridge on his birthday. They were all very excited about Dan’s birthday. I think birthdays are a special celebration at Yellow Bridge. After all, it is not every day that you get to have cake. This time Dan had a large butter cake decorated with blue and silver stars. One of Dan’s friends has an amazing memory for birthdays. He only has to ask you once and he will remember your birthday and take great delight in reminding you when your birthday is coming up. Dan’s birthday was never going to be a secret!

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On the weekend after his birthday, we had a party for Dan at home with his family who live in Queensland. Dan was so excited. He gave everyone a hug when they arrived and took great care opening the presents. I am always impressed at the way people put a lot of thought into a gift for Dan, thinking about what he enjoys rather than what’s traditional for a twenty-first. Then it was time for cake number three – a delicious mud cake, also decorated with blue, silver and white stars. It looked fantastic, thanks to Kim from Abbolou Cakes who did a wonderful job on both cakes.

Dan’s life journey has been different. While the milestones and achievements are eventually reached, the timeframe has often been different. But a twenty-first is a twenty-first, no matter where you are on the journey. Dan may not be making important life decisions or moving out of home tomorrow, but we have had a wonderful celebration of his life with the people he loves. And you can’t get better than that.

The Trials of the Non-verbal

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Dan is non-verbal. Well, that’s what I usually tell people when they first meet him because it’s easier than trying to explain the ins and outs of his oral communication abilities. But he’s definitely not mute. You can ask his sister, Bec, about that! Dan loves to sing – at any time of the day or night. Sometimes it’s a whole verse and sometimes it’s just one line, over and over, like a needle caught on a broken record. Dan can say words. He can identify people and things he knows, repeat words and phrases, but he cannot hold a real conversation. So I just tell people he is non-verbal.

It’s quite amazing what people assume about the non-verbal. I’ve lost count of the number of people who express amazement at how well Dan knows his ABCs or the numbers up to ten. They are usually stunned into silence when I tell them he can read, knows the numbers up to one thousand, can add fractions and calculate percentages. Although Dan can’t read at an adult level, he does recognise almost all the regular sight words and has quite a large sight vocabulary of other words. When he was very young, before he started school, he loved The Wiggles. He could pick out a Wiggles video out of a stack, even though the only thing that was visible was the label on the side – and even when it was upside down. Somehow he recognised the shape of the word. Like many people with autism, he is a visual learner.

Before Dan’s diagnosis, a speech delay was suspected and we began to introduce signing. Well, Bec picked up the signs almost immediately and she was the one who could speak perfectly well. Dan took a little longer, and signing was okay but it was limited to those who knew the signs. After the diagnosis of autism, we were introduced to PECS (picture exchange communication system) and it was a great breakthrough. Dan could request things and make choices. We made up a big folder with all the pictures and it worked really well at home but it was rather cumbersome in other environments.

Over the last few years, I’ve seen kids and teens with autism use iPads as a communication device and I’ve been really keen to try one with Dan. He picks things up pretty quickly, as long as it’s not toileting (but that’s a story for another time). Even when you think he is not paying attention, he is taking everything in. He just can’t get it out. And like his sister, he’s pretty quick with technology. Despite all this, our journey towards a more effective and age-appropriate communication system has been frustrated with stops and starts, changes in therapists and differing opinions on what is right for Dan. But finally I hope we are on our way.

I know the visuals work for Dan. We use them for his everyday routines.  Dan is usually pretty good with the morning routine except that he always needs prompting to do the next step. This is something we’ve been working on, but our recent trip to Adelaide caused an unforeseen ripple in the morning routine. While we were in Adelaide, I bought Dan a new shirt to wear at his grandfather’s 80th birthday. Dan must really like this shirt because he has wanted to wear it every day since we got back. It’s a really nice shirt but it’s just not suitable for him to wear every day for his group activities at Yellow Bridge.

The problem is that once Dan has done something once, it becomes a routine for ever and ever. It just took one morning for the new shirt to become entrenched into the morning routine. It didn’t matter how many times I said to pick a different shirt or take him back to his room to change, it happened every day.

We’ve been trialling a little communication app on my iPad, just to see how it goes. Its not proloquo2go but works in a similar way. It’s just very basic and so far so good. I used it to make up a board about getting dressed and so this morning we went through it before he went off to get dressed. Voila! It worked. He came out first time, without the new favourite shirt and appropriate dressed for the day. Visuals make such a difference.

I am really looking forward to seeing how our journey progresses. I know there is so much that Dan knows and just can’t express. I would love to be able to have a conversation with him that is more than a learned pattern of responses. I would love for Dan to be able to communicate and interact with others on his own terms. I want Dan to be as independent as possible and lead a happy and fulfilling life. And an effective communication system is the key.

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Dog Alert

 

Now that the weather has started warming up, we have been getting outside a lot more. I had noticed that some extra padding had mysteriously accumulated in various places over winter so I have been determined to be more active. One morning I decided to take Dan for a walk around our neighbourhood block. It was going well until we passed a place that had a dog.

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Dan hates dogs. I can’t ever remember him having a bad experience with a dog, however, for as long as I can remember, he has been afraid of dogs. Now the dog that we passed was safely behind the front fence. It looked over the fence at us and barked at us, but we were quite safe. However, as soon as Dan hears or sees a dog, he tries to get as far away from it as possible. Even if it means putting himself in danger by standing in the middle of the road. It doesn’t matter how much I try to reassure Dan that he is perfectly safe; the dog is behind the fence, he can’t get you – he is usually determined to go in the opposite direction. Eventually, we managed to get past the dog, but it was very exhausting.

One of the things we like to do when we are camping or touring around Australia is visit wineries. I especially like the small family-run, boutique wineries and I have noticed how wineries and dogs often go together. Dan has a good memory. I used to think he remembered which wineries had dogs, if we happened to visit them again. But an experience earlier in the year has raised a different possibility.

Before Easter, we spent a weekend at a small town called Kingaroy just a few hours north-west of Toowoomba. We visited two wineries. When we arrived at the first place, Dan wouldn’t get out the car. We looked around, couldn’t see any dogs and tried to reassure him that there were no dogs. Reluctantly, he got out the car and followed us into the wine tasting area. I was tasting a few wines and chatting to the owner, and asked him if they had any dogs. He said they had two dogs but they were in the house with his wife. The next minute, Dan is trying to climb up my husband, Paul, who is over six foot. One of the dogs, a small dog, had escaped from the house. Climbing up the nearest human tree is Dan’s favourite escape strategy. Thank goodness he has stopped trying to climb up me.

When we went to the second winery, a strange thing happened. Dan got out of the car – no problems. I thought, this is a bit weird. Anyway, we go into the shed and I ask the lady if they have any dogs. No dogs. I explained about Dan’s autism and dislike of dogs, and she thought he could probably smell them. People on the spectrum often do have a heightened sensory awareness and Dan is quite sensitive to sound and touch. But it never occurred to me that he could smell dogs. The next time he refuses to get out of the car, we’ll know.

Turning Points

On the weekend, we had the privilege of hearing Li Cunxin (Mao’s Last Dancer) speak at the University of Southern Queensland’s (USQ) open day. Every year, USQ has an open day and it is a great opportunity for prospective students, especially country kids, to check out what courses are on offer and learn a bit about university life. As a regional university, USQ is the ideal place for country kids to study in a safe and supportive environment without having to face the big city. The theme for this year’s open day was “fearless”.

Li is an amazing and inspirational speaker. Most people, I guess, are familiar with his story. Born into utter poverty in Mao’s communist China, the sixth of seven sons, hardship and starvation marked his childhood and left an indelible imprint on his memory. However, his parents love and sacrifice gave Li hope and courage. One day, something happened that would change his life forever.

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“One moment in life can transform your entire journey of life.”

Turning points are crucial. It can be the difference between following one path or taking another. There were a number of crucial turning points in Li’s life–the teacher who tapped the official’s shoulder and pointed to Li; the Russian ballet teacher who encouraged Li and inspired a love of ballet; and being selected to go to the United States as part of an exchange program. We can only wonder the path Li’s life might have taken, if any of these turning points had not happened.

We all have those moments in life which become crucial turning points. For me, there are at least two that are significant. The first was when my son, Dan, was diagnosed with autism, shortly before his third birthday. I hardly knew anything about autism, except for Rain Man, however it has taken me on a journey into a world I could never have imagined. It has made me stronger, more confident and resilient. I have learned to challenge assumptions and expectations, and advocate for Dan. I have discovered there are different ways of being, thinking and doing.

The second turning point in my life was when Rob, my first husband and father of my children, died suddenly of a heart attack. This is a story that I will tell you more about some other time, but it’s like they say:

“what doesn’t kill you, makes you stronger.”

Despite the hardship of Li’s early life, the brutal training at the Dance Academy in Beijing and the pain of separation from his family after defection, Li maintained that hardship, rather than easy success, can provide the most crucial moments. This is when you have to dig deep. This is when you discover who you really are and what matters most in life.

Li encouraged us to be fearless, to make the most of every little opportunity; to be positive and to make a difference in the lives of others. In the end,

 

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“it is not how long you live your life, but how you live your life.”

 

 

 

 

Bush Running

 

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Every week my son, Dan, goes bush walking with a support worker up at Picnic Point. Dan is tall and thin and has long legs. It comes in handy sometimes. When we do the grocery shopping, he can reach the items on the top shelf. Dan didn’t inherit his long legs from me. He is very active, so when he walks, he is like a man on a mission. Once he gets into the zone, he just goes. There are two speeds–stop and go. His support workers have nick-named their bush walking excursions as “bush running.”

Now if you want to get fit, walking (or running) with Dan is a great idea. However, it does have its downsides. While he is in the zone, he has no sense of road safety. If he knows where he is going, he just goes, across the road without looking. One time I thought it would be a good idea for us to go for a walk around our suburb. As long as Dan was in view I thought it was okay. But then he got just a bit too far ahead, and it didn’t matter how much I called–he was in the zone. There was no way I could keep up with him and worried about what would happen when he reached the road, I had to ask someone to help me catch him .

Dan also has a tendency not to see people. When we are out among crowds, he tends to just barge through people. Fortunately, nobody has been injured yet. But it does mean that when we go out, I need to hold on to him and manoeuvre him in and around people and obstacles. In the past, he has even walked straight into a pole.

On the weekend, Dan, Bec and I went for a drive out to Crows Nest National Park, not far from Toowoomba, to see the waterfall. The walking paths to the pools, the look out and the falls, all have steps. Lots and lots of steps. I’m not really all that keen on bush running, so as we go down the path, Bec sets the pace from the front (she has long legs too) and Dan brings up the rear. As we were going down all the steps to the water pool, I  thought about how we would have to come back up all those steps. No matter. I put Dan in front, held on and he pulled me all the way to the top. As I said, he can be quite handy!

We laugh about the bush running and admire Dan’s stamina, but I wouldn’t have it any other way. Even though he is mostly non-verbal, he is always happy and makes our life very entertaining.