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Living with Autism

Monday, 13 June 2016  |  Admin


As mums there is barely a day that goes by when we don’t worry about something. We worry if our children sleep too little and we worry if they sleep too much. We worry if our children are hungry and we worry if they won’t eat. We worry if we leave our children at nursery and we worry if we keep them with us. Suddenly the world is full of grey areas and a million and one ways to make mistakes.

We have a thousand preconceptions about parenthood, we have dreams and hopes, ideas of what our future children will be like. For most of us, they are dreams that will alter and take different shapes. But for none of us is that more true than for the parents of children with special needs. Our hopes do not die, our preconceptions are still there, but we look from a different angle, a new one – a road less chartered.

When you start to think your child is different to others of their age, your worries are multiplied, you make comparisons, you worry; then you worry that you are worried. You question yourself. You think you are being paranoid. In fact most people will probably tell you that you are. Friends. Family. Professionals. Well meaning bystanders. If I had a pound for everyone that told me child Number One was ‘normal’, that I was worrying unnecessarily then I would be rich. Very rich.

Somewhere along the line, perhaps at the point where she screamed for an hour because nursery wanted her to play out in wellies, or perhaps when we had to leave the restaurant because the table we had previously sat at was occupied, or maybe when I realised that she could name any Disney song within two notes of it starting, I decided I needed to know. Not wanted but needed.

Somehow though, however much you expect it, however much you plan for it, you are not ready. You can never be ready. When a panel of experts looks at you and tells you you are right, it isn’t a victory. Because this time you want to be wrong, you want to be paranoid. You have never wanted it more in all your life, and quite likely you will never want it as much ever again.

‘Normal’ I tell both Child Number One and my students is overrated. Boring. It is better to be an individual. You see Child Number One has an Autism Spectrum Disorder, as do the 12 students with whom I spend most of my days, they often feel out of place in a world which is often cruel and rarely understands. It’s my job as a mum and a teacher to make that ok.

But on diagnosis day, that normality was all I wanted. All I could think was that my daughter’s life would be harder than I could imagine. That her life would never be easy. That she would always have to try that much harder than her peers to succeed. And yes, I cried. I cried and cried. I cried for the dreams that would not come true, but most of all I cried because I couldn’t save her from the world.

Looking back, I could never have imagined then how far she would come. How well she would cope. True, she doesn’t always find things easy. But that is undoubtedly what makes her the kind, compassionate, and incredible human being she is.

If I could choose now, there is nothing I would change about her. But I would change the world. I would make people kinder, children more accepting, and I would certainly get rid of spiders. Failing that, we’ll just continue taking each day, one day at a time, together as a family.