September 2017

Life with autism

by Tanya Nielson

 

I never dreamt I would grow up to be the sort of woman who cries at the drop of a hat. I always despised women who rode a huge rambling rollercoaster of emotion. Keep it to yourself – exercise a little self-control for God’s sake.

Now,I have joined this emotional little clique. I read an article this morning (sitting on the toilet of course – where else would I have the time alone to read) and cried yet again. What was this inspirational topic? A Hollywood celebrity discussing life with an autistic child. Autism is not selective, people from all lifestyles are affected. It is an elite club you do not really know much about, until YOU are invited to join. When another member is announced I cry with empathy, sympathy and ashamedly, relief that I am not alone.

For a parent, those words “your child has autism” is paramount to someone telling you “sorry, you are dying.” It has a death knoll to it that you never expected. Gut reaction: it is a joke, right? Not your child – hey – he talks and is loving! Don’t autistic kids sit in a corner barely emoting let alone being verbal? Must be a mistake; but it is not and in your heart you know it is true even as your mind screams “NO!”

Your whole view on life changes, not in a split second, but gradually, little by little, as the implications of this diagnosis kick in. When a child is born, it enters into a world of parent ambitions and dreams. When that child is diagnosed with a disability, the parents grieve for their lost dreams and ambitions. The world as you know it stops spinning and starts to revolve in different and more unpredictable ways. The life that you led changes, not always for the better. There are days when I honestly believe in the saying ‘ignorance is bliss’.

You start blindly along a path strewn with obstacles, seeking and searching for answers. It is a steep learning curve with your child’s future at stake. It is only as you progress through the system that you learn to become ruthless and track down the compassionate professional who understands, informs and supports. Nobody ever dreams that by five years of age your child could have a panel of specialists ranging from homeopaths to psychologists to speech therapists, occupational therapists and physiotherapists working with him.

There are so many different therapies thrown at you, to pick a direction and stick to it is fraught with uncertainty and doubt. What if it is the wrong choice? What if I am damaging his fragile psyche and another choice would have smoothed his life for him? It is easy to feel that a decent mother would be able to fix things for him. I second guess and doubt my choices, but have finally learnt to rely on that age-old tool – a mother’s instinct. Even so, no matter how many times you are told otherwise, you wonder if this condition was the result of something you did.

It all is so much harder because I swim against conventional thought and theories in the treatment of my child. MY child, don’t they get it? MY child. Nobody on this earth understands him the way I do. Not even his father who acknowledges the unique, special link I have with my firstborn, that iron, heat-forged, binding chain of love we share. Yet I am probably the toughest with him. I have never subscribed to the school of “poor me, poor him”. I have never allowed the boundaries to differ in relation to both my children. My oldest has to live in the real world, thus he has to learn to cope with the real world. As much as he would like to, he cannot avoid reality and the associated pressures.

How would I describe my son? He is eccentric, unique, pure of heart and has Asperger Syndrome. He is emotionally challenging, heart warming and eminently loveable. I hope he is happy and content in his life. I dream he will marry, have children, follow his dreams, and fulfil his potential. He is angelic of face, volcanic of nature but only those who witness him in full meltdown see those masked eruptive depths.

He has the typical autistic sensory issues, smell, touch, taste, sound, and sight. Like a superhero these are all fine-tuned to hypersensitivity. Low muscle tone contributes to fine and gross motor problems and physical exhaustion. Social skills are learnt slowly, friendships are complicated. You know he cannot help it, but it is the whinging that wears you down. If you think all kids whinge, then multiply it by one hundred and you have life with an autistic child. These children are the eternal pessimists of life. I think Murphy was autistic (you know – the one who wrote ‘what can go wrong will go wrong’).

I have framed the first Mothers Day letter he wrote me at age five. My friends cry when they see it on my wall as they acknowledge the intense struggle it was for him painstakingly to write. The last line is, “You are very special because you always save me from falling.”

When questioned about this, his reply was “you always save me Mummy, from falling sad, from falling mad, from falling over.”

My son.

Who believes Mummy will fix anything.

I have to live with the knowledge that I will not always be able to save him from falling. I will not always be there when he tumbles. I have to give him the tools to be able to pick himself up, dust himself off, and keep moving, physically and emotionally. To provide the basics for him to grow into the amazing man I know he can be.

This image of what can be is so vivid in my heart that again I cry, with pride.

 

© Tanya Nielson

“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*

I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves thanks Gloria for those aspirational words.

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* Gloria Steinem