The Carer’s Road

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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.

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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.

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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.

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.

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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.

 

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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.