Turning it around

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A mum describes how her son’s autism has changed her life for the better

It wasn’t until Elliot’s second birthday that I knew for sure that something wasn’t right. He was still crawling and was late in all areas of development.

Elliot finally walked at 26 months but, at the same time, he seemed to regress. He stopped talking. He lost all the words he had learnt and he quickly began to isolate himself from the world. He became so distant that I couldn’t reach him. He used to hide in a corner of the living room with his eyes shut and his hands over his ears. I had no idea what was wrong or what I could do to help.

On the day that a doctor mentioned autistic spectrum disorders (ASD) I felt like my heart had been ripped out. Within seconds, it seemed like all the hopes and dreams I had for my son were gone. But I thought of all the things that Elliot did – hiding under sofas, his lack of eye contact and interaction, and the strange way he played with toys – and it all made sense.

I cried when I got home, wondering what I had done wrong through his pregnancy. Nothing prepared me for the pain, anger and sadness that I felt.

During the weeks that followed, autism became painfully real. I remember Elliot hiding in the corner of the room spinning the wheels of a car up close while all his nieces and nephews played happily together. At parties, he would drop to crawling to study the floor and carpets. It was all too easy to imagine how isolating and sad his life, and our lives, would be.

I did not know where to look or who to turn to. I had no friends with autistic children so I went on the internet to research.

Then the appointments started and soon afterwards, I had them coming out of my ears: hospital visits, doctors, therapists of all kinds, CAF, TAC, nursery staff, outreach workers and health visitors. I was so tired.

Elliot became more distant and was fixated on creating and following lines, spinning wheels, spinning himself or watching the washing machine go round. At first, I was upset that he didn’t play normally, but through my research I began to understand why: it was a way for him to deal with stress and anxiety and to block out any uncertainty. If he was feeling overwhelmed, he would repeat a motion or follow lines on the floor. These were his ways of coping with everyday life.

A big part of our family life now is planning and preparing Elliot for the day ahead. We have introduced picture and photo cards to show him where we are going next, while using sign language, visual communication techniques and iPad apps to improve his communication skills and to help him progress.

That fateful doctor’s appointment was two years ago and little did I know how Elliot’s autism was going to change my life for the better. I never imagined that I was going to learn like I’d never learnt before, that I would be stronger and more confident than I ever had been and that the diagnosis was just the start of my journey.

I now run a support group and meet up with parents and children regularly. I also run a world-wide awareness support page. I am a full-time mum and carer, autism advocate and voluntary parent representative at my local children’s centre.

Being an autism parent is hard and it has pushed me to my very limits. But I believe that we are all special in our own way. How else could we handle a life that is altered so quickly and so completely and still stay strong and focused.

Further information

Sarah Alderson runs the Autism Storms and Rainbows page on Facebook.

 

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