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Sarah Welsh: How finding out that our son Rory is autistic changed me and my family's lives beyond recognition

By Sarah Welsh

This week, I found myself comforting a friend in our local coffee shop. We were talking about our eldest children - her son and my daughter - and the fact that they are both carers for younger siblings with specialist needs and wise and compassionate beyond their years.

What brought tears to my friend's eyes was the thought that neither of them may have the chance to have a school photo taken with their younger sibling - an experience that many of their friends have enjoyed and, quite rightly, taken for granted.

I empathised with her, but for once I was the one telling another parent of a child with additional needs that things can - and will - get easier.

This August, it will be two years since my four-year-old son, Rory, was diagnosed with Autistic Spectrum Disorder (ASD). If I'm honest, I'd known for months - even years - that there was something different about my beautiful, blue-eyed boy.

Rory was late hitting all of his milestones, skipping the crawling stage entirely and only taking his first wobbly steps at 19 months. Many people told me, "Don't worry - he's a boy. They're lazy. He'll get there in his own time" and I'd try to convince myself, against my own fears and better judgment, that they were right.

When my husband Geoff pointed out the way Rory lined up his toys in perfect rows, flapped his hands like a bird's wings when he was happy or excited - a classic sign of autism - or struggled to make eye contact with us, I brushed it off.

But, after a series of appointments with health visitors, Rory's GP and finally a consultant specialising in social communication disorders, we were told that there was no doubt about it: our son was autistic.

In those early days after he was diagnosed, there were tears, long conversations with each other, close friends and family and actually some small relief at finally knowing what we were dealing with. But there was also the gut-wrenching panic of worrying about what this might mean for Rory.

Would he ever learn to speak properly? Would he be able to make friends like his sister, Immy, had? Would he be bullied because of his condition? Would he be able to hold down a job, have a relationship, or live alone?

There's a saying that goes something like: "You grieve for the child you thought you were going to have" and I've never liked it, because, to me, it's like saying you want to change them.

But have I grieved sometimes for the experiences I might never get to share with Rory? Yes. Are there days when I would take the autism away if I could? Absolutely.

What I have found strength in, though, is how we've pulled together as a family unit and, little by little, without us even really realising it, we've adjusted our outlook as parents too.

Shortly after my son's diagnosis, I found using social media incredibly difficult. A photo of a friend's child simply smiling at the camera was a totally alien concept to Rory. A photo of a child sitting on a balance bike could reduce me to tears.

But now I've taught myself to not compare him to other children. I still have days when I struggle, but now I'm proud to shout about Rory's condition on Instagram and Facebook and document all his amazing achievements.

And, six months on from making the very difficult decision that Rory won't be able to cope at mainstream school, I'm delighted that we've secured him a place at the local specialist primary, where he'll get one-to-one support and they couldn't give a toss whether or not he's co-operating with toilet training by September.

Despite only being four years old, Rory is without doubt the bravest person I know. Autism means that just leaving your house on certain days can lead to crippling anxiety, yet he's always cheerful and has a cheeky smile.

Friends, colleagues, family and his teachers have all gone out of their way to tell us that Rory brightens up their day, and that makes me feel incredibly proud.

And while I might not be able to predict what's yet to come - for him or for us - I know that the future doesn't frighten me half so much anymore.

Belfast Telegraph

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