Is It Okay to Admit to Hating Autism?

Last week Blue-eyed boy started school. It’s not the school we had thought he would go to but it’s a lovely school with caring staff and he seems to be settling in already.

In his typical laid-back style he mastered getting on the minibus that now picks him up from home and drops him off in the afternoon in about two days, without shedding even one proper tear (unlike me) and according to his teachers is enjoying lessons, playing with other children in his class and adapting to his new surroundings like a pro.

I’d been planning to write a blog post about all this, about how proud he was in his uniform on that first day, smiling at the camera much more than he normally does, aware that this was some kind of special milestone that we, and hopefully he, would always remember.

But it’s been a strange few days so I’m shelving that particular spiel for now.

As a parent it’s always a tricky transitional period when your child starts school, especially when it’s your youngest I think, as the totally carefree part of your and their life is in some ways gone forever, partly to be replaced with reading charts, spelling tests and maths homework – alongside a load of wonderful new opportunities of course.

But with Blue-eyed boy, since his A-word diagnosis there’s been a lot of worry along with carefree bits, and in some ways him starting school threw up lots of feelings that I wasn’t expecting.

It reminded me that in many ways life has changed forever, and the future we thought would be his may now never be. You almost feel guilty saying that when your child is doing so well and carving their own path, but of course it’s natural sometimes to almost yearn for what you’d planned for and expected.

I never thought I’d be sending my son to school still wearing pull ups despite 18 months of hard work trying to toilet train him on and off.

I didn’t think that he’d struggle so much with eating school dinners – unless it’s the days when his beloved pasta is on the menu.

After more than two years since being told Blue-eyed boy has ASD I didn’t think I’d feel a pang that he wasn’t in reception class in the same village school as Mini-me. But I did, briefly.

Now all of this doesn’t mean that I’m not hugely proud of my son, who in many ways has to fight harder to achieve things that other children might find easy. But this morning after witnessing a huge sensory meltdown over a bloody cottage pie of all things I woke up to the dark feeling that I sometimes have that on occasion I really hate autism.

I know this might offend some parents of children with additional needs, because often autism is talked about in terms of ‘embracing’ it. And that if you say you’d like to push a button to take it all away it’s somehow saying you don’t accept your child.

I love my little boy too much to put it into actual words. And I say that as a writer – and I’m definitely a better wordsmith than I am a parent. I’ve never had any illusions about that.

I’ve witnessed first-hand his struggles, his many victories, how hard he tries and how much he loves it when we cheer him on for the next word or phrase mastered, the next food stuff he samples, the activity he unexpectedly enjoys.

But that’s why on some days I hate autism. Why I wish it would bloody do one. Why I’d love to make life just a little easier for my beautiful boy.

And why I messaged my friend earlier, who is in this additional needs parenting boat with me, to ask if she felt the same.

And why I felt relieved when she said she hates it sometimes too.

So there we go autism. We’re doomed to have a lifelong love hate relationship you and me. Sometimes I might ‘embrace’ you, many other times I’ll tolerate you, but for today you can just f*** off! And that’s okay too.

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Why my four-year-old son is the bravest person I know

I wrote this piece for the Independent Newspaper and the title’s Comment/Voices section to mark World Autism Awareness Day. I thought I’d publish it here to mark April’s World Autism Awareness Month…

This week I found myself comforting a friend in our local coffee shop.

We were talking about our eldest children, her son and my little girl, and the fact that they are both young carers and wise and compassionate beyond their years.

What brought tears to her eyes was the thought that neither of them may ever have the chance to have a school photo taken with their younger sibling – something that many of their friends have enjoyed and chatted about happily.

Of course it’s heart breaking to think that your six-year-old child can tell you how sad they feel that something their classmates quite rightly just take for granted isn’t an option for them, at least not now. But what really struck me about this situation was that for once I was the one telling another parent of a child with additional needs that things can and will get easier.

April 2nd is World Autism Awareness Day, a fact not lost on the estimated 700,000 people with a diagnosis in the UK or their families. It’s also not lost on me because this August it will be two years since my four-year-old son was diagnosed as having Autistic Spectrum Disorder (ASD).

If I’m honest I’d known for months, years, that there was something different about my beautiful blue-eyed boy, the second baby we’d struggled to have and the absolute image of his Nanna.

Blue-eyed boy was late hitting all of his milestones, skipping the crawling stage entirely and only finally taking 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 that they were right, against my own fears and better judgement.

When my husband Geoff pointed out the way our son 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 and changed the subject.

But after a series of appointments with health visitors, our GP and finally a consultant specialising in social communication disorders, we were told that there was no doubt about it – our son was autistic and the future life that we’d hoped and expected for him would never look quite the same again.

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 Blue-eyed boy. Would he ever learn to speak properly? Would he be able to make friends like his sister had? Would he be bullied because of his condition? In the future would he be able to hold down a job, have a relationship, live alone?

These unanswerable questions turned round and round in my mind like a tumble dryer – and then of course there was the guilt and the anger. Why was this happening to my child? Was there anything I could have done to prevent it? Why didn’t I pick up on it earlier? Why couldn’t things be different?

There’s a saying that goes something like: ‘You grieve for the child you thought were going to have,’ and I’ve never liked it because, to me, it’s almost like saying you want to change them. But have I grieved sometimes for the experiences I might never get to share with Blue-eyed boy, for the doors that may now be closed to him? Yes. And are there days when I would take the autism away if I could to make simple things like eating a meal or cleaning his teeth less of an ordeal for him? 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.

In the early days I found using social media incredibly difficult. A photo of a friend’s child simply smiling at the camera or doing something that was a totally alien concept to our lovely boy, like sitting on a balance bike, could reduce me to tears – but now I’ve taught myself to not compare him. Yes I still have days when I struggle, but now I’m proud to shout about Blue-eyed boy’s condition on Instagram and Facebook and document all his amazing achievements.

I used to worry about what I’d do if his sensory issues led to a meltdown on the school run or in the park. Now I happily chat to the parent next to me when he’s struggling to ‘queue’ for the slide and tell them he has ASD which sometimes means he finds it hard to share.

During a job interview where someone told me she was ‘very sorry’ that my son was autistic, I visibly bristled and quickly told her that she shouldn’t be because he’s doing so well.

And six months on from making the very difficult decision that Blue-eyed boy 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 cooperating with toilet training by September.

Despite only being four, my son is without doubt the bravest person I know. Autism means that just leaving your house on certain days can lead to crippling anxiety, but yet he’s always cheerful and cheeky, with a smile that literally lights up any room.

Friends, colleagues, family and his teachers have all gone out of their way to tell us that Blue-eyed boy 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 us, I know that the future doesn’t frighten me half so much anymore with Blue-eyed boy in my corner.