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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