Where there’s a Will

May 25, 2017

My son has been diagnosed with Autism Spectrum Disorder. Which means he has a spectrum of disorders.

Wills spectrum includes an inability to read and write, delayed language skills and limited conversational language, reasoning is severely affected as are his fine motor skills. He cannot build sustainable relationships with his peers and interacting constructively in sport and games is affected as he cannot sequence appropriately.

The world in his mind is real, he finds what he wants to do and does it. He is very much in the moment and says things exactly as they are for him. He cannot explain his emotions and finds it frustratingly difficult to make sense of time. He will often repeat things until he is heard and his emotions can build to a point of breaking.

Wills spectrum also includes an innate ability to communicate with people with limited language. A passionate love of life, determination that any olympic coach would fight to have on his team. He is honest loyal and incredibly loving. Characteristics we so wish all human beings displayed.

So let me go right back.

20 years ago on the 16th February I gave birth to a baby boy. My husband at the time was taken to an exquisite moment of joy when this little thing was gently placed on my exhausted body … this baby was indeed perfect. This tiny precious little baby came into the world smiling crying and seeing, and created in us an undeniable love and commitment to his future. Nothing he did in that resplendent moment gave us any thought or forewarning he would be later labelled …  autistic.

We happily and blindly ventured into our parenting journey with no understanding of what was to come.

I was challenged about Wills milestones at about 2 years of age and I recalled at the time thinking .. he was not walking at the average age, he was not speaking the range of words and he was not engaging as children do at that age but generally he’s doing OK and nothing could possibly be wrong with my child.

My mind at the time did not go or simply want to go to that place .. even with the obvious being presented to me and seeing it with my own eyes.

But the big overriding feeling was I thought I did not know what to do.

When I was in that state of not knowing, it was perhaps guilt and sadness that got me moving.

To finally admit to myself and our family and accept that Will had issues meant we were introduced to the very real and daunting world of early intervention. Suddenly our world became one of therapy, travelling to appointments and days at home avoiding public contact and potentially embarrassing and difficult moments. Which we certainly had our fair share.

I was strong but not devoid of the feelings of public scrutiny.

The medical experts we so relied on to guide us did not know what he was. What to label him. The symptoms were obvious yet broad .. so we could only work with those symptoms and we were left to work it out ourselves. Untrained and unsure we navigated our way through the myriad of information. All this was done drug free with a very natural approach.

We had Will assessed through traditional and non traditional methods. We met with a gamut of therapists, travelled all the way to London and changed our eating habits for 12 months.

We were quickly and intimately ensconced in weekly physiotherapy, occupational therapy, speech therapy, homeopathy and kinesiology as well as a home life that was not what I ever imagined.

I was out of my depth at times, a little frightened, in denial that this was going to be permanent and a big piece of me was running on a path I didn’t know where it was going to take us.  Desperately trying to pretend life was normal, denying there was a problem hoping that it would soon be fixed through the all the intervention.

I understand now that we were a family that was strong.

Although this decision to take action took a little longer, we researched and we knew how to make decisions. However the thought of those families that don’t have those skills, that did not know how to navigate their way round and simply stayed in denial and did not have the income for therapies .. what happened to those kids.

The one little centre that catered for kids delays with therapies in our region was severely under resourced and under funded which made getting the support we needed so hard. Limited time available for much needed sessions and not enough space to work with those kids who needed more space.

Another example of having to put up with our only option.

I set about helping to raise funds for the Centre. To allow them to increase their reach and ability to support families. We raised over $100,000 and built a new centre which still operates today. It became our go to place for many years.

We also opened the door to our community to get involved and see our kids. Its not about being in a little house in the back streets away from the public  .. our kids needed to be seen and to be apart of their community. This inevitable helped the families feel not so different and isolated.

I was so much stronger 12 years on around Will and so much more aware that he needed a champion. He needed his mother and family to fight for him and ensure he received the attention he so needed to live a happy and fulfilled life.

There continued to be few options for Will with his disabilities to participate without feeling he had to fit in. We constantly had to find or create opportunities. However we tried the sports and the clubs.

Amongst all of this little did I realise that he was happy. In his world he was happy  .. he just did not fit into the world I saw and experienced and everyone around him saw and when he fought back I saw that as a negative. We felt we had to fix him to make him fit in versus stepping into his world.

At age 12 he was asked to leave a beautiful little school that had nurtured his spirited and innocent soul for 5 and half years. A school that we helped grow into a compassionate place because the children understood the beauty in Will and his so called disabilities.

They helped him and us, realise that ability and disability can work harmoniously when you see the person behind the behaviour. He had friends, participated to is ability in class and played. The principal always greeted him and put his big arms around his shoulders and walked him to class. I always drove away feeling safe.

We worked with the bus company and arranged for a bus to take the kids to the school as it was quite a few kms out of town and soon Will was independently travelling. With love and guidance all things are possible.

So with only 6 months until graduating a new principal arrived at the school. At a time where it was organising farewells, saying goodbye to a beautiful school life and arranging photos the new Principal felt Will was too disruptive and asked us to leave.

We were devastated and angry that one person could affect us and Will, in such a bewildering way.

And yet for the 5 and a half years previous to that day I reflected … it was one person that changed his life so emphatically and that of his family. We and he were made to feel so included and so normal.

You see it can be one person to see you to help you to believe in you … or one person that doesn’t see you doesn’t take the time and doesn’t believe that you are worth the effort. Both can affect … its how you respond.

I came to understand it was such a gift that the change occurred as it opened the doors we needed to continue to grow around Will including his eventual diagnosis and a move out of our region to a school for kids with disabilities. It meant he would have to board for 4 days in the week as the travelling was too far. Yet it would be all about him in an environment created for kids such as Will. It was the best place.

The details of that decision to move him, although were right at the time, were traumatic. It was also a time we had to intervene with medication. So many trials of drugs incurred over the preceding months. Drugs that changed Wills behaviour and his spirit. We were advised Will had to take something.

So another path to walk. A path leaving us feeling exhausted and overwhelmed. In our belief that it was the right place for Will he reminded us that he missed his family and his community and fought it every step of the way. We were called weekly and made trips to the school only to be sat down and told of all the things that were going wrong and a continual review of his medication.

All this over a period of 2 and a half years. It took its toll on all of us. There was also at this stage a little sister at home, Phoebe and daily life.

Sometimes I think about the little daily things that we dealt with and I wonder how we coped. Quite some time later I came to realise that all I had lived and learned from this boy to this date gave me the resilience and determination I needed to do what I am doing today. He also opened the eyes of his family who were forever changed .. for the better.

A life perspective can be challenged if you care to stop and stand in the pain, in the anxiety and in the dysfunction. Not all things need to have a clear path or make sense. Sometimes we can simply be in the moment.

On top of the schooling issue and the thought we could not bring him home as there were no options .. it was tough. Tough because we live in a world where indifference is difficult to understand and sit with. We had to deal with the gravity that our child had disabilities. That in itself is up there with emotional complexity but to have to deal with the bureaucracy the lack of support and the lack of opportunities for our child to simply live a normal life .. that was at times unbearable.

It amazed me that my daughter who is very able had so many choices available to her for schooling, for sport for creative pursuits and hobbies and yet my son, who needed so much more care and attention had so few options. It was an insight I quickly had to get used to and potentially respond to.

Then the day arrived .. the day we had to bring Will back home to the unknown . To a little school for kids with moderate to severe disabilities.

The school within weeks advised us that Will would not be able to stay .. he was too difficult. It was a moment in time when I thought how can this always be Wills fault. Perhaps he simply knows that he is not being seen and heard.

So with help I rallied 10 people from all levels of the Department of Education and government agencies as well as the school and asked them to sit with Will and myself and explain to me that if this was your child what you want me to do. Would you stand back and allow a system to tell you you have no choice but to leave. This was his community.

In the whole time Will sat with his back to the group.

Within half an hour of going around the table we had the so called problem solved.

Conversations about where to find additional funds for one on one time and programs to be written to guide him through this time of change. All of 30mins to find a life changing solution.

It became personal to everyone and they realised this could in fact have been their child sitting here with no options. When it was resolved and everyone offered their support .. Will slowly turned around to face the group. He said nothing but his actions meant he knew exactly what was happening. They saw him.

Please don’t ever think people with disabilities do not understand do not feel or do not know. It is easy to stereotype.

Will eventually became captain of that school, sportsman of the year, the most outstanding horseman, musician, part of team running a cafe, teacher of the younger students and a well loved and honoured member of the school community, and he graduated from Year 12.

So the lesson … its not what happens to us its how we do it.

Which also reminds me of the day we lost Will in Sydney.

I was in Dubbo at the zoo and Will was visiting his grandparents. He wandered off with his skateboard very early this particular day in a city of a population close to 4.5 million people. No ability to express he was potentially lost at the appropriate time.

I drove 7 hours to be apart of the search party with my heart beating to a beat of fear. 7 hours in a car is a lifetime when your child is lost. My sister called every 20 mins to be by my side and talk me through my feelings.

I arrived at St Ives which borders the National Park to a temporary command centre of over 40 police officers including 4 local areas commands, search and rescue, dogs and helicopter. It was late and Wills dad was somewhere following on a potential lead. I had not cried and somehow held all fear at bay quietly praying that wherever Will was that he would find a safe place and he would find some light so he would be seen.

Midnight came and we were advised the search would be stopping. No thats not possible I thought .. so I had my spotlight and as I walked away from the busyness to find a pathway to keep searching, the search and rescue team suggested they would stop off at a skatepark some 10kms away on their way home. We had assessed all the options as to how far Will may go .. it had never happened before it was such an unknown. I thought nothing off it as it was simply too far away and I knew Will would be sitting down the road somewhere waiting for us.

The phone call came to say he was found sitting in a bus shelter 10km away.

I remember simply sitting on the ground and for the first time I felt myself breathing. It was like slow motion and the words found, we have him, safe … all were sounding like they were on loud speaker.

He was driven back and every single person that had been involved in the search for the past 24 hours drove back and formed a semi circle to greet him back. He simply walked through the crowd to me and said sorry mum, hugged me and turned to the crowd and quietly said thank you. He was shivering and to this day I have no idea his thoughts, if he was scared or how he got so far away. However he had found some light and a safe place in the bus shelter.

I drove home the next day sobbing uncontrollably. My fears exposed themselves.

I have since learnt the lesson of letting him go and trusting his abilities. I have never felt that level of fear again.

We began working with a company soon after this helping to fine tune a satellite navigation watch to help our kids. Will wore this for 12 months which allowed him to have some independence and us .. some peace.

Now he has learnt to use a phone which has a sat nav inbuilt.

Some 12 months later we happened to be at a Special Olympics event with the NSW Police and respective units. In amongst the 100’s of people gathered we met the search and rescue man who found Will in that bus shelter and who drove him back to us early that morning. As it was such a blur I don’t even remember talking with him. We simply smiled at each other and gave that knowing look of deep gratitide.

On meeting for the first time we both shook our heads in disbelief that in this massive crowd here we were. He hugged me whilst recalling the event with a detail I had not heard previously. So thoughtful and compassionate was his perspective I had not realised the trauma he also felt as a rescuer … later that morning after finding Will he was searching for twin 4yr old autistic girls. Not sure it had the same outcome as ours.

After graduating from school we found ourselves is a completely foreign environment.  A world with less focus on the individual. Fortunately for Will he had built a village through his sport and especially his cricket. He had also become an advocate for those with disabilities and he became a young person who simply gave everything a go. Not caring what it looked like or who it was with. He was well known in the community.

He began participating in a weekly program with a local organisation. 4 days of social interaction, learning life skills and generally learning a new way of life out of school.

For me to be completely honest, it was heartbreaking to see the range of disabilities all piled in together. The very old and the young ones straight from school. Learning to socialise, learning to integrate. Each fitting in together and I wondered often, how I would feel if this was my only choice but could not communicate my needs around an environment which could barely cope wth the complexities of the disabilities and where they are all treated so generally. Understandably the higher the need the greater the attention required.

Will did well to fit into this environment as he was the youngest and most able.

We are into his second year of this transition and are working with another organisation where the program is very individualised. However this means we only have 2 days not 4. The other days will works with his dad, does odd jobs with local businesses and works on his cricket bats.

It was however becoming more obvious at the lack of choice we have for our kids with work experience and employment. I know the skills are limited for many, and for many, the repetitious nature of the work offered through disability based work sites suits them wonderfully. Whatever works ..

I am aware there are a number of businesses that employ people with disabilities and I am conscious of the effort that is required to mentor and monitor.

Our Will early this year began working at a local government supported business and showed us in many ways that he was not about to settle for anything less than a life of his choice. So yet again the journey began .. constantly walking away from work, behavioural issues and hours spent in discussions. I felt the uncertain routine slowly coming back to smack me in the face .. what aren’t we doing here.

Life was again becoming a constant series of stops and starts, behaviour and at times the physical and emotional abuse … which I now know hurt Will the most as he could not control his emotions in moments of stress.

Whenever I had felt that “what aren’t we doing moment” so many things have grown from that seed of thought.

When there was no community sports that catered for him I helped administer Special Olympics to our region. It meant setting up committees establishing 5 new sports and so many families benefited from qualified coaching, weekly training programs, attendance and potential selection into regional interstate and international competition.

When there was no cricket events that catered for him I created the ANZAC Day cricket match on Bradman Oval. This brought together people with disabilities from all over NSW and was the catalyst for reigniting cricket for Special Olympics around Australia. It went on to become one of the most enjoyable events on the calendar with our kids showcasing their ability on the Bradman Oval. We had the Bradman Foundation and the Primary Club of Australia as well as Rotary all supporting the event.

When there was no music that catered for him I created SING. An event that brought together 11 choirs from around our region who mentored people with disabilities for three months. It concluded with a concert with each choir singing their song and then coming together as a mass choir of 450 singers. Our kids in the middle of it all being cheered by a standing ovation. Schools and community choirs all coming together harmoniously with families and friends witnessing their kids and friends in an environment not ever seen before. There was not a dry eye in the house of over 800 people watching the event.

When I felt we were lacking in gratitude and those around us weren’t acknowledging the positive small things in our community I started the Gratitude Project. A creation of thank you cards used specifically every day to write a hand written message to someone to say thanks, to say hello or simply to say how are you.  I felt we had forgotten how to connect in this age of texting and emailing and social media how nice was it to receive a hand written message from a client. We created packs of personalised cards for real estate agents, a bank, an accounting firm and camp quality to name just a few.

So when I felt there was limited work options and no clear pathway for his future … Willo Industries was created.

And this is where the story of the cricket bats begin.

Its amazing what can be conjured up when your sitting around in the heat of the day watching cricket. A friend and I were talking that Will needs to be doing something the combines his love of cricket and something practical.

Additionally and probably importantly, the business is about creating independence for Will and allowing him the chance to be control of his future.

Why not refurbish cricket bats and turn them into useable objects.

I immediately set forth and found all the cricket bats we had lying around home and through ANALA, the local organisation that was helping Will with his integration program, they identified a carer and together Will and Stephen began sanding bats.

Soon teaming up with the local mens shed, mornings at his Dad;s workshop and occasionally using the local timber furniture business. Wherever they could find space, find the time and the support… they were sanding and cleaning up bats.

Along the way I met Peter Browne. An amazing local artist who had worked with Pro Hart and creates extraordinary artwork of outback colours and animals. Peter offered without question to paint a bat for Will and promptly sent an email to his network … Artists without Borders.

Soon we were posting bats around Australia  – to Port Douglas, Perth, Lightning Ridge, Victoria and South Australia and the idea to create art on bats became the concept which was quickly gaining momentum. I seriously could not believe the people that were offering to work with Will. All of such high caliber. The generosity was quite overwhelming.

The idea of an exhibition was soon hatched and our friend offered to MC the event. Julia Zemiro from ABC Rockwiz. The idea to have all the bats exhibited and an auction will raise the funds needed to establish the business and create the support he needs for his future. The event is on the 17th February the day after Wills 21st birthday.

The International Cricket Hall of Fame/ The Bradman Foundation offered the Museum to host the even as well as an ongoing shop for the bats.

It suddenly had legs.

With so much to do and as a single mum working full time I wondered how on earth I was going to bring this together. We needed some income to purchase equipment for Will, to set up a workshop and to put into transport and freighting. So I set up a crowdfunding site which resulted in raising over $7,000. We bought all we needed and put some aside. It also raised some awareness

In the meantime I had a call from Ernie… So Ange tell me about these bats. Ernie Dingo wanted 3 for his family to paint. Jimmy Barnes has 3 for his family to paint. They just kept coming. The 2 teams from the 2016 AFL grand final signed bats as did the Roosters.

Will has known the ex Australian Prime Minister The Hon John Howard, for many years through their combined love of cricket so we soon found ourselves in his Macquarie street office talking and sharing stories. He offered Will his PM’s 11 bat from the Aust NZ 2002 match.

A bat from the TIWI Islands came to us as did a bat created by a mum with a son with Autism. That was special. Two local schools – Will worked with the woodworking class just yesterday at Oxley College who helped him prepare the bat prior to handing to the art class for creation. The well known Quest For Life Centre through Petrea King combined with Michael Clarke to sign a bat.

I was recently contacted by the regional business centre who had heard the story and wanted to help us establish the business further with Will with the intention of making it a sustainable.

Will has been interviewed and filmed for ABC Radio, has had a front page story on the Southern Highlands News and has been approached by the 7:30 Report to do a story.

To this day he has no idea what is happening behind the scenes. He continued to sand the bats, competed in his first 25km mountain bike race, was part of his local 3rd grade premiership winning cricket team and attended the local Rotaract club meetings.

So now what?

Through the exhibition we hope to auction all of the bats and raise enough funds to further develop the business.

Continue the cricket theme and add other sporting equipment and capitalise on his carpentry skills with other timber mediums. Within 12 months we would like to be in a position to employ at least 3 people with disabilities. We want to become a employer of choice for people with disabilities. Doing and creating beautiful things, helping the environment and having fun whilst developing constructive members of our community.

We need a vehicle for Will to collect and deliver the bats and whatever products the business will be creating.

Within 5 years we would like to purchase a property to offer a shared home environment for those seeking an independent life. A home with carers and friendships and a place that belongs to our children.

So our story ends with the thought that Will could not have done any of this alone.

To walk this path without the help of our beautiful family especially my parents who have had our back since that day he arrived into this world. Our friends and our community. It takes a village to raise a child… I truly believe this.

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