Hanging Out with the Boys

Hanging out with your friends is something that most young people take for granted. Going out for a drink, watching a movie or cheering your favourite sporting team are all rites of passage on the journey to independence. Young people meet up, hang out and bond together spontaneously without hardly a second thought.

But if you’re a young person with a disability, it’s never quite that simple.

Dan has always had a positive relationship with his peers, with or without disabilities. During primary school, the other kids accepted Dan for who he was, included him in group projects in the classroom and invited him to the occasional birthday party.

Something changed though, when they all moved to high school.

High School is a Totally Different Ball Game

It goes without saying that high school is a totally different ball game to primary school. Having one main class teacher enables a much greater focus on inclusion than the wide range of subject specific teachers that occurs at high school. But something else happens too. Adolescence. 

Adolescence is one of the most trying and challenging times of a young person’s life. As they struggle with figuring out who they are and how to fit in, the kids with disabilities are no longer cool. It’s not that their attitude towards people with disabilities has necessarily changed. It’s just no longer cool to include the boy with autism. While they mostly still had a positive attitude towards Dan, the impetus to include him socially was no longer there.

I’m not blaming anyone here. It’s just what happens. And it leaves a lot of young people with disabilities isolated.

People with disabilities want the same things that people without disabilities just take for granted – acceptance, friendship and a fulfilling life.

Despite having autism, Dan is very social. He loves being with people. He has a very loving and accepting extended family and he is always included in all family activities, but it’s not the same as having some friends of your own.

This is where the NDIS really comes into its own. You can read about our journey with the NDIS here. 

Prior to the NDIS, for Dan to participate in social activities, I had to tag along. Now that’s okay when you’re young. But having your mum tag along when you’re 20 something is not cool at all. Yet this was the case for many young people with disabilities.

The Boys Group

 

With this in mind, families and Yellow Bridge got together this year to create opportunities for a group of young guys with disabilities, like Dan, to be able to socialise together informally. For want of a better name, we currently call it The Boys Group. Over the last few months, the guys have met each month and just hung out together. They’ve had dinner, played laser tag, watched footy, been to the circus and, later in the year, will be attending Shrek the Musical at the Empire Theatre.

Without the NDIS, this would have been impossible.

Without the NDIS, these guys wouldn’t be able to socialise together without having their parents tag along. Now they can hang out together with support workers, who are also young guys, just like them. I can never emphasise enough just how impressed I am with the number of young people I see choosing to work as disability support workers. It really warms the heart and instills pride in our young people.

The NDIS has come in for a bit of criticism of late, and sometimes, rightly so. But, it is early days. It was always going to be an ambitious undertaking to provide the financial support so that people with disabilities can lead independent lives full of meaning and purpose. There were always going to be teething problems and we just need to keep moving forward, working together to make it a reality.

For now, I am just grateful that Dan has the opportunity to be a typical young guy and hang out with the boys.

 

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The Carer’s Road

Every day is a journey,

and the journey itself is home.

Matsuo Basho

 From the moment we are born, a path stretches out before us. We don’t know where it will lead. We just begin, one step at a time.

Sometimes the way is a smooth, well-worn path and at other times it feels like we are cutting a path through rugged terrain. The road meanders, curving left and right, every turn revealing a new mystery or challenge. Sometimes we coast down hill only to struggle to reach the top of the next rise.

The carer’s road is a life long journey. We didn’t set out to be carers, but here we are, on a road that has contained curves, u-turns and uphill challenges. As the years go by, though, it can feel like we are caught on a treadmill. The days run into each other, a monotonous streak of repetition and predictability, with no reprieve in sight.

Life with Dan can be a bit like that. Every morning the routine is the same – the same steps, the same prompts, the same responses. Dan likes routine. Routine is good. It keeps everything ticking along like clockwork. Sudden changes in routine can cause all sorts of trouble when you’re on the spectrum. But it does feel like you will keep on repeating the same day, forever.

When you are a carer, it can be tempting to feel that your life is on hold, that you are stuck on the bench watching, while life is passing you by. You see others moving on to the next stage in their life, breaking through glass ceilings, travelling to far-flung places, seeing the sights of the world and climbing Mount Everest. Meanwhile, we are still giving the same round the clock care and supervision. We can feel that life is out there somewhere, in the distance, for others to experience, and always out of our reach.

But this is not true.

Sure, the carer’s road looks different. Different can be good. It is filled with everyday miracles, outstanding achievements and more spills and thrills than a rollercoaster.

I don’t need to break through glass ceilings. I am quite regularly sweeping up broken glass after Dan has precariously balanced the crockery on the edge of the shelf.

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I don’t need to see the leaning tower of Pisa. Over the years we have seen many of the towers of Dan, some leaning, some standing perfectly straight, each one a master of architecture.

I don’t need to climb Mount Everest. After many years, we finally made it to the top of the toilet training mountain. It was a long haul but the achievement was exhilarating.

Life is not passing us by.

This is our life and we are living it every day.

 

Inclusion – Side by Side

Like many other proud Australians, our eyes have been glued to the television screen to cheer on our athletes competing at the 21st Commonwealth Games, here in Queensland, on the Gold Coast. The Commonwealth Games have a long history and have many things in common with the Olympic Games. Since the first games in 1930, they have been held every four years, (except during WWII) to spread goodwill and understanding throughout the Commonwealth of Nations. This is the fifth time Australia has hosted the Commonwealth Games and we are one of only six nations that have attended every games. And, not to boast, we do top the leader board for winning the most medals. As a proud sporting nation, the Commonwealth Games are pretty exciting for us.

The Opening Ceremony on Wednesday night had a strong focus on Australian Indigenous culture as well as our relaxed Australian beach culture. We really enjoyed it all – the Indigenous dancers, the didgeridoo orchestra and the towel change rooms (after all, we all need a little help from our friends sometimes). We were particularly moved by the raising of the Australian flag and the Aboriginal flag together – side by side.

The parade of athletes began with Scotland, who hosted the last games in Glasgow, followed by the rest of the teams region by region – Europe, Africa, the Americas, Asia, the Caribbean, and Oceania. There are 53 nations in the Commonwealth, but dependent territories are able to compete under their own flags, making a total of 71 teams. Of course the loudest cheer was saved for the Australian team, almost 500 able-bodied and para-athletes, walking out together – side by side.

The Commonwealth Games is not only the largest fully-inclusive international multi-sport games, it was also the first. Since 2002 the Commonwealth Games has been an integrated competition. The athletes march side by side in one national team. The events are scheduled together, which means if you are at the pool, you see both able-bodied swimmers and para-swimmers compete and receive their medals. And all medals are counted in the nation’s total.

For those of us sitting at home watching the Commonwealth Games, we can see the able-bodied and the para-events, side by side. We can share in the highs and the lows of all the athletes, side by side. The names of all athletes, able-bodied and para, become house-hold names. They are all  representing their country and doing us proud, side by side – as it should be.

Now we enjoy watching the Olympics, both Summer and Winter, too. We especially enjoy watching the Paralympics. Not because we think para-athletes are somehow more super human or more amazing, but because they are great role models for overcoming challenges and embracing life, no matter what curve balls it might throw at you. But we can’t help but notice the great difference in media coverage between the Olympics and the Paralympics.

 A local issue?

Now this might just be a local issue. Maybe it just reflects the attitudes toward people with disabilities in Australia. Or maybe it shows that the Australian media still has a long way to go towards equal representation. Are we alone in our frustration or is this a common experience world wide?

We have certainly come a long way in creating a more inclusive society. Not so long ago, people with disabilities were shut away from the world, excluded from education, the community, from life – they were invisible. Today people with and without disabilities learn together side by side, work together side by side, live together in the community side by side, and in sporting events like the Commonwealth Games, march and compete, side by side – as it should be.

But we still have much further to go

What if parents of children with disabilities didn’t have to fight for appropriate support? What if people with disabilities had better access to public transport, education and work opportunities? What if Olympic and Paralympic athletes marched and competed side by side in a fully integrated, fully inclusive Olympic Games? What if we could see equal representation across the whole of society?

 

All people learning, living and playing together, side by side. That’s inclusion.

Recovering the Christmas Spirit

Just one week ago I would have said, “Four days to Christmas and I’m already over it!”

It was hot. The roads and shopping malls were packed and the list of all the things I was supposed to do to ensure everybody had a Merry Christmas was growing by the minute. If this was Christmas, the most magical time of the year, then I was over it. Even though the Christmas Tree stood in the corner, beautifully decorated by Bec, and the Christmas Carols were reverberating through the house, I could not summon an ounce of excitement, or anything remotely like joy, peace or love.

It didn’t used to be this way

I remember the excitement and magic of Christmas when I was a child: counting down the days, wondering what surprise would be waiting for me under the Christmas Tree, watching John Martin’s Christmas Pageant wind its way through the city streets of Adelaide. I remember the taste of Grandma’s Christmas Pudding, the joy of playing with far-flung cousins, and the mystery of why the adults preferred to sleep the afternoon away.

What happened? How did Christmas cease to be magical? When did it become a focal point for stress and panic, and a symbol of greed, waste and over consumption?

It seems I am not alone

In the weeks leading up to Christmas, I came across quite a few posts and articles advocating a simpler approach to celebrating Christmas. In our house we had already been wondering about some of the so-called Christmas traditions and questioning why we do the things we do and who says we should do them. I mean, do we even like turkey?

Sometimes it feels like we get so overwhelmed with the traditions of a celebration (not just Christmas, but any celebration) that the whole reason we are celebrating in the first place, is forgotten. Perhaps we need to take a simpler approach to celebrations. We could spend less, eat less, stress less and instead, celebrate the reason more.

As it turned out, I did recover my Christmas Spirit. And it wasn’t from spending more or doing more but by stepping back and enjoying the things that are right in front of me.

So here are my three tips for recovering the Spirit of Christmas.

 Let the kids do the cooking

One of the best things about having young adult children is that they can start to take over the domestic tasks of family celebrations. I actually don’t like cooking much at all. It seems like a waste of time slaving over a hot stove just to have it all wolfed down in five minutes. Lucky for me, Dan and Bec love cooking, well cooking the sweet things, that is. So, I do the mains, Bec does the desserts. It’s a good arrangement. Mind you, nobody waxes lyrical about a potato salad in the way they do over a fancy pavlova or layered trifle. You can see Bec’s contributions below.

And Dan is not to be left out either. Since the group activities at Yellow Bridge have finished for the year, he has been doing some cooking with his support time. Check out his Gingerbread Biscuits and White Christmas.

Okay, so the White Christmas fell apart a little, but it tastes much better in big chunks than little pieces.

 Focus on one tradition that has meaning for you

Since we moved to Toowoomba, we have been living in two houses; one here, and one back out west. This means that some of our good stuff has been back at the other house. It’s been three years since I’ve had my Nativity set out and I didn’t realise how meaningful that tradition was, until I retrieved it this year. It was quite surprising how the ritual of unpacking each piece and placing it in the scene carved out a special quiet time for reflection.

There are many traditions we could probably do without, but you just need one to rediscover the joy and magic of Christmas.

 Celebrate time together

As almost empty nesters, daily life with Dan and Bec is slowly drawing to a close. Next year Bec leaves home to begin study in Brisbane. Within the next few years we hope Dan will make the transition into supported accommodation. This is probably our last Christmas with them both still living at home.

Family life with autism is always a bit different. Even though Dan is the eldest, he is the older-younger child. From a very young age, Bec has been the younger-older child. As a two-year old she was reminded to look after Dan at the playground, even though he was nearly two years older. It’s not easy for a child to grow up with a sibling who has a disability. There are just some things that peers can never understand unless they are walking the same journey.

 

For the most part, Dan and Bec get along really well. While Bec often needs time on her own, she shows generosity and patience with Dan, prepared to sit down and play UNO, help him play the Wii or kick the soccer ball around.

 

Watching them play a game together reminded me of the need to celebrate whatever time we have together. We never know when it may come to an end.

 

And what was under the Christmas Tree?

 

I hope your Christmas was filled with the love of family, the joy of meaningful traditions and the peace of simplicity.

Life with the NDIS

The National Disability Insurance Scheme (NDIS) has been progressively rolled out around Australia over the last few years. It is a scheme designed to provide individuals with disabilities the support they need to live a life that is purposeful, fulfilling and as independent as possible. Here in Toowoomba, the NDIS started at the beginning of this year and it has been an interesting journey for us all.

Prior to the NDIS, Dan had been granted some disability support funding but it was limited. We were able to get Dan into some group activities at Yellow Bridge, but for the most part, wherever I went, Dan went and wherever Dan went, I had to go too. And this is the way it would probably have continued, well forever.

The NDIS has changed Dan’s life

But the NDIS has brought a significant change to Dan’s life, as well as our own. The transition process was definitely quite stressful as we negotiated the paperwork and planning conversation, however his funding package has allowed us to set goals we thought would be a long way off. Dan has continued to participate in the group activities he enjoys so much, like cooking, singing and dancing, bowling and making music. He has also been able to have some one/one support to pursue his favourite activities, like swimming and bush running.

For so long I have been Dan’s major support and carer. As parents caring for a child with special needs, we don’t stop to think about all the assisting, prompting, supervising and decision making we do. We have done it for so long, it is just a natural part of our life. It can be difficult to even conceive how life could be any different.

A different way of thinking

The NDIS has brought about a change in thinking. Suddenly, I can go places or do things without Dan having to tag along. Dan has the opportunity to participate in activities that regular guys do, without having to have his mother tag along. Over the last month, Dan has gone to a disco, been camping, and had a movies and pizza night with mates – all perfectly normal things – with the help of a support worker, who is probably far cooler than his mother.

It feels a bit strange though. It was really weird when Dan went camping. The house was so quiet. Instead of prompting Dan through every step of the night routine, I could relax, watch TV, read a book, and all the while, Dan was having a ball with his mates at Cressbrook Dam. The next morning I didn’t have to get out of bed at 6am to take Dan to the toilet. I could sleep in. It was so unbelievably quiet.

On Thursday Dan is going to Dreamworld on the Gold Coast for a Christmas break up with Yellow Bridge. For the first time, I am not going with him. It’s not that I don’t like spending time with Dan. I do. It’s not that I don’t like Dreamworld either. It’s time for me to start stepping back. And the NDIS has allowed me to do that. Dan will go with a support worker and probably have way more fun on the rides than with me. Besides, how many 21 year old young men go to Dreamworld with their mother.

I am starting to wonder what the future might hold for Dan and us. It will be strange when my days are no longer filled with transporting, prompting, assisting and supervising. At the same time, I look forward to it. Of course I will miss Dan terribly when he is no longer living with us, but it is only right and proper that he have his own life. And that would not be possible without the NDIS.

Special Needs Disco

 

 

Dan attended his first disco on Saturday night. With Christmas just around the corner, there was a theme of silver or gold, so Dan wore a sparkly silver hat and a silver tie with his black shirt. He looked pretty spiffy, although I’m probably biased.

The disco is a monthly event run by the local Down Syndrome Support Group, but anybody with a physical or intellectual disability can attend. They have been running the discos since 1996 to provide a safe and welcoming environment, where people with disabilities can enjoy the music, have fun with friends and dance the night away. Each disco has a theme so people can dress up and the hall is decorated to fit in with the theme.

Some of Dan’s friends from Yellow Bridge have been attending the discos for quite some time, but this was Dan’s first time. Thanks to his NDIS funding, Dan was able to attend with a support worker and apparently they both had a great time.

 

 

I’m not surprised. Dan has always loved music. When he graduated from high school in 2014, his dancing was the highlight of the evening at the Year 12 Formal. His classmates formed a large circle, clapping and cheering, while Dan took centre stage in the middle, dancing in his own unique style. This usually involves running around in circles, leaping over obstacles, and clapping his hands high in the air, while his face is lit up with pure joy.

All through Dan’s schooling, I was always impressed at the way his peers just accepted him for who he was, finding ways to include him in group activities and cheering him on, whether he was running down the lane at the athletics carnival, performing on stage in the school musical or stealing the limelight on the dance floor.

A few weeks after the Formal, I met one of the other mums down the street who commented on Dan’s love of music. She said that Dan’s dancing had been the highlight of the evening for her husband. When Dan is singing and dancing, people cannot help but be infected with his effervescent happiness and joy.

It is so rewarding to see Dan go out and do all the regular things that guys his age do. After all, that is what we all want for our children, to see them happy, enjoying life and participating in the life of the community – just like everyone else.

Saturday night may have been Dan’s first disco, but I’m sure they are going to be a regular event on his social calendar.

I hope that your days are filled with effervescent joy and happiness too.

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.

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!

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!

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

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.

 

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.

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.

“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,

 

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