The Journey into Autism

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The word ‘journey’ can conjure a variety of images in our minds. Perhaps you imagine packing your bags and catching a plane for that once in a lifetime trip around the world. Or perhaps you think about stepping into the great unknown, travelling down an unfamiliar track, not knowing where you will spend the night or who you will meet. Throughout our life we will embark on many journeys, some short, some long, some never ending. Sometimes we know the final destination and sometimes we can end up somewhere completely unexpected. But every journey begins with that first step.

The dictionary defines journey as an act of travelling from one place to another.  It is also defined as a long and often difficult process of personal change and development. I think this second meaning sums up the journey into the world of autism.

From the moment I knew I was pregnant with Dan, I knew he was a boy. I don’t know why or how I knew. I just did. Like all parents, we held hopes and dreams for our child. We had so many questions. Who would he take after?  Who would he look like? Who would he become? As first time parents we didn’t really know what to expect, but we expected our parenting journey would be pretty similar to those we saw around us. I didn’t know then, how different our journey would actually be.

Dan arrived a little earlier than expected into the world. It wasn’t exactly smooth sailing, but we got there. It’s difficult to describe that moment when you hold your child for the first time. Your heart is filled with more emotion than you ever thought possible. All the pain is pushed aside as you gaze upon this little person, overwhelmed with the rush of love and the awesome responsibility of the journey ahead. Dan was beautiful, perfect, precious and very loved.  

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As babies go, Dan was pretty placid. He slept well, didn’t cry too much and seemed pretty happy. We had no reason to suspect that things weren’t all as they should be.

Dan reached almost all of the major milestones within the right timeframe – except for speaking. I wasn’t too concerned at first, but to be on the safe side, we consulted a speech therapist. After a while we were directed towards an early intervention program in our town, and eventually a paediatrician. That was when we heard the A word for the first time. I thought that Dan just needed more time. 

 Finally, just before Dan’s 3rd birthday, we heard the A word said with definition. And then our world changed forever.

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Autism. It’s not a huge word – only six letters – but it means a whole world of difference. Eighteen years ago that word would devastate me. All our hopes and dreams for Dan’s life were shattered and we were filled with despair about the life he would have. On that day I could never have imagined that there would come a time when I would say that there are no regrets, no wishful thinking, no desire for a cure. I would not change Dan for the world. 

Our parenting journey has been different. The road has been long, and sometimes it has been very hard. But it has also been filled with much joy. Despair soon gave way to a fierce and absolute determination to give Dan the best life he could have. It was a steep learning curve. Patience, alternate communication, maintaining routines, sensory issues,  persistence, food intolerances, special education, and advocacy. Every thing we learnt along the way, were the very things we needed to show to the world – patience in the face of ignorance and insensitivity;  persistence to keep on going when things are tough and get even tougher; and advocacy to bring about the changes we wanted to see, the dreams we wanted fulfilled, and for the rights we all take for granted.

Dan is a wonderful human being who graces this world with much love, enthusiasm and enjoyment. He is loving and generous, happy and giving, friendly and helpful. He possesses all the characteristics a mother could ever want for her child. He is a son to be extremely proud of. Even though verbal communication is a struggle for him, Dan demonstrates his love and kindness everyday. I don’t know quite where his journey will lead, but I know it’s going to be awesome.

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The journey into autism is tough. It is not for the faint-hearted. But you will learn about true friendship and what really matters in this life. And you will discover depths you never thought you had.

If you have just started on this journey, may you be filled with hope and encouragement.

 If you are someway along this journey, may your well be replenished with the strength to keep on going. 

And if you are not on this journey personally, may you be a source of encouragement, support and understanding for those of us who are. 

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For the 18th Time

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We are moving house – again. For me, it will be move number 18. And I expect I can look forward to a few more moves yet.

I don’t remember my first move. I was only about three when my family moved from a small country town to Adelaide, where I grew up. Almost my entire childhood and adolescence was spent in one family home. The same family home that my parents moved out of about a year ago. My Dad has just turned 80 and my Mum is in her seventies, and they have just moved for the third time in their life.

In contrast, Dan and Bec have lived in eight different homes and they haven’t even left home – yet. I wonder how many moves they will clock up in their lifetime.

I’ve moved house for all sorts of reasons – education, marriage, work, family. As you might already know, we moved to Toowoomba to access better support for Dan. Much as we loved our small country town, Dan’s life opportunities were always going to be limited. So, like many other rural families with special needs children, we did what we had to do. We moved.

However, it split our family in two.

While I relocated with Dan and Bec, my husband Paul remained behind for work. It’s not ideal, but it’s what we have to do. Paul comes in for weekends, when he can, and sometimes we go back out west. At times it can be a bit stressful, always trying to work things out and make decisions over the phone. Sometimes I feel caught in the middle, not really sure where we belong or where to call home. But at the end of the day, I know that moving to Toowoomba was the best decision for Dan.

So, why are we moving house again?

A momentous transition is about to occur. Bec is moving out of home. Very soon she will be moving to Brisbane to study Music Technology at the Queensland Conservatorium. It’s a very exciting opportunity for her, but it means we will be going from mostly three in the house, to only two – for the most part. With Dan spending more and more time away from home, having his own life, we don’t really need such a big house. So we’re downsizing.

While Bec packs for her move to Brisbane, we are packing boxes too, sorting out stuff, throwing some away, donating others, and whatever doesn’t fit in the new smaller place, goes back out west to deal with in some future time.

For many families with autism, moving house can be very stressful. Fortunately for us, Dan has always coped well with moving. Perhaps it’s because we have moved a lot and he sees it as just another part of life. Perhaps it’s because we have involved him in the process, explaining what was happening, showing him the new place, his new room and getting him to help sort, pack and unpack.

I hope that we will be able to stay in this next place for more than one year. I hope that the next move will be Dan making the big transition into supported accommodation with some mates from Yellow Bridge. I hope that not too far down the track Paul will be able to join us in Toowoomba.

Until then, the next few weeks will be busy as we gear up for move number 18.

A New Year Dawns

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As the sun sets on 2017, our eyes turn to the new year. 2018 promises us a chance to begin again, to wipe the slate clean. As we reflect on the past year, our achievements and blessings, our failures and disappointments, we resolve to be better, be healthier, happier, kinder, work harder, spend more time with family or in the gym. In a moment infused with champagne, with fireworks echoing in our ears and rose coloured glasses firmly in place, we make resolutions that will be lucky to survive a few weeks let alone a whole year.

What is it about a new year that creates this desire to make promises that secretly we know we will never keep? Most resolutions do not survive more than a couple of months – if that. Despite the best of intentions, bad habits are notoriously difficult to kick. I guess that’s why they are called bad habits. Yet every New Years Eve we trick ourselves into thinking we can make a complete 180 degree turn in the few minutes it takes to move from one year to the next.

And when our best made intentions fall beside the wayside, what then? Do we give up? Do we have to wait for another New Year’s Eve to try again? Do we watch the sun set on another year’s opportunity for change?

Well, actually, no.

The sun sets and rises each and every day. We don’t have to wait for another year to wipe the slate clean, turn over a new leaf or make a change for the better. When the sun sets at the end of the day, that day is gone. Finished. We put our failures, disappointments and frustrations  behind us and when the sun rises the next day, we stretch, take a deep breath and start again.

Every day is a day to start again. Every day is a slate wiped clean. Every day is a chance  to make a change, to take one tiny step on the road to being the person we really want to be. Instead of a complete 180 degree turn on one day of the year, which is doomed to fail,  we could choose to take one small step each day for 365 days. And when we slip up, or fall short, tomorrow is a new day. We pick ourselves up and try again.

Tonight the sun will set on 2017. Tomorrow it will rise on 2018. What will the new year bring us? 365 new days. 365 sunrises. 365 sunsets. 365 opportunities to live with love, joy, gratitude, forgiveness and grace.

Wishing you not just a Happy New Year but 365 Happy New Days.