Home / News / Mum reveals what having a child with autism is really like – and says it is far more challenging than BBC’s The A Word – Mirror.co.uk

Mum reveals what having a child with autism is really like – and says it is far more challenging than BBC’s The A Word – Mirror.co.uk

The A Word, about autistic boy Joe , seven, is again on TV.

Writer Katy Brent, 36, from Hampshire, has an autistic son aged six and says the truth is far more challenging…

“I’ve fairly a particular relationship with The A Word, as a result of it mirrors the journey I’m on with my son Seb, virtually seven.

Like Joe, the boy on the centre of the drama, Seb was recognized two years in the past and these two years have come with challenges. Lots of challenges.

For one, the meltdowns – and inevitable judgment that comes with them – is a very totally different ball recreation now.

A almost-seven-yr-previous throwing himself down on the ground in a grocery store, or crawling across the flooring of his faculty, barking, is a lot more durable to move off as “normal” behaviour.

Katy says BBC present The A Word mirrors her personal journey with son Seb

Seb, who was lastly recognized two years in the past, typically will get violent and aggressive

The seems to be have gotten colder. The social gathering invitations and play dates have dried up and, whereas he’s in mainstream faculty proper now, it’s unimaginable to know if he’ll realistically keep there long run.

It’s a stab within the coronary heart each time I get “that” look from somebody who assumes I’m lazy or a garbage mum as a result of my child isn’t “well-trained”.

If they knew the lengths I’m going to, the battles I struggle and the tears I cry for my son day by day, they’d in all probability give me a hug. Life is now about adjusting and studying. Unlike fictional Joe, Seb isn’t a dreamy – virtually ethereal – presence in our household. The greatest strategy to describe him is like a pint-measurement (however robust!) Jekyll and Hyde. When we get up we don’t know who we’re going to get.

Seb goes to mainstream faculty however sadly, celebration invitations and play dates have dried up

When Seb is on a good run, which may final something from an hour to a week or so, it feels like I’m seeing the boy he can be if he wasn’t autistic. He’s humorous, so loving – we’ve got our personal signal language for “I love you” – and extremely sensible.

I’m so grateful to the handful of youngsters who settle for him with out prejudice. They might train most adults a lot about humanity. Seb nonetheless has his quirks in calmer occasions – like intense obsessions. Right now it’s Minecraft on YouTube – I’ve seen a lot I typically dream in pixels.

He’s very literal with language – I as soon as requested him to scrub his palms within the downstairs lavatory and, properly, I’ll depart the remaining to your creativeness.

But when he isn’t having a simple time, it’s like he’s managed by one thing else.

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He’s violent to anybody who will get in his method. A lot of his anger is taken out on his little sister, which is horrific. I can’t depart them in the identical room for worry that in the future he’ll go too far and significantly harm her in a rage.

Most individuals at college have seen me having to wrestle him whereas he hammers me with punches and kicks.

Some have even heard him screaming that he needs to kill himself or needs I used to be lifeless. Seb feels each emotion very deeply. When he’s joyful he will get past excited.

A seven-yr-previous flapping and squealing like a tot is exhausting as it can take hours for him to return down from this excessive. When he’s cross, he feels complete fury. When he thinks one thing is unjust, he feels it completely to his bones.

In final week’s episode of The A Word, the household struggled with when and how you can inform Joe he is autistic – one thing I’m at present dealing with.

Seb has begun to ask why he has particular help at college and why the play dates have stopped.

The A Word follows the fictional story of Joe, who suffers from autism

But Katy says the BBC present is not that just like her actual-life journey

I’ve began to elucidate some individuals’s brains work in a different way, hoping he’ll have the ability to fill within the blanks himself.

It’s a wonderful line as I don’t need to overload him with info, or make him really feel anxious.

I discover Seb’s aggression very troublesome to deal with, there are such a lot of ranges of fear. I always fear Seb will alienate his few buddies with his aggression and be left alone, or get bullied. I fear I gained’t have the ability to management his outbursts as he grows. Basically, I’ve a knot of hysteria in my abdomen always.

I can solely think about that’s not even a fraction of what Seb feels. Just think about the burden on him. He’s incapable of simply being a carefree child.

Over the previous two years I’ve stopped questioning if the Seb I see in his calmer occasions is the child I’ve been robbed of and have realised it’s two sides of the identical coin.

Without autism he wouldn’t be the fantastic individual he is. With the whole lot, good comes with dangerous.

There’s a saying that goes “Autism is a journey I didn’t plan, but I sure do love my tour guide”. I feel that sums us up.”

  • The A Word is on BBC1 on Tuesdays at 9pm

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