If you meet my eight-year-old son Brody, you will notice many things; his ability to light up a room, his joy at the small things in life – and, eventually, the fact that he is non-verbal.
Side note: this does not mean that he is quiet.
Earlier this week, as I was watching season two of The Umbrella Academy, a particular storyline hit home; the one of Harlan and his mum Sissy. Like my son, Harlan is a young boy who doesn’t talk, and the assumption from many viewers is that he has autism.
I don’t have to tell you that every child and family is different, but some parts of the story reminded me of my own experience of raising Brody. Born with a rare genetic condition, autism and epilepsy, my son’s lack of speech is one of the aspects of his disability that can be very hard to cope with at times.
It’s difficult to describe how helpless you feel as a parent when your child is unwell or upset, and you don’t know why. Not being able to find out what Brody wants for birthdays or at Christmas also makes me incredibly sad.
And not hearing my name – or ‘mum’ – endlessly repeated or an ‘I love you’ took some getting used to.
These are things that others take for granted. But we, the parents of children who cannot speak, learn to read non-verbal cues and body language and, quite frankly, we wing it.
Communication isn’t just speech. Even if my beautiful boy can’t say it, I know that Brody loves me – his affection doesn’t require words. He tells me in other ways. He laughs, he smiles and blows raspberries. Sometimes we look each other in the eye and laugh and it’s like we are the only ones in on the joke.
To most people, it quickly becomes obvious that Brody doesn’t talk, perhaps because of the noises he makes or due to his behaviour and mannerisms, such as his excited, flapping arms.
But for some – like people behind checkouts who kindly ask him what his name is – it doesn’t click straight away.
I usually introduce Brody to them and explain that he can’t answer back. He speaks to them in his own way and more often than not he’ll blow them a kiss (he’s a charmer).
There is often an assumption that a person who can’t talk, doesn’t understand, which isn’t true. Brody understands lots of things and demonstrates this with his actions, like getting his shoes when I tell him we are going out.
There are challenges, though.
Brody often gets upset because he can’t tell me when something is wrong, which only doubles his frustration. He then shows his emotions by hitting his head, throwing things and occasionally biting.
Similarly, in episode three, Harlan becomes frustrated when he can’t work the record player and displays these same behaviours. I could relate.
I cope with the bad days with laughter. To give an example, I chuckled when Harlan’s dad, who after being told to watch his language in front his son, said ‘if that boy said son of a bitch, I’d buy him a BB gun’.
I’ve shamefacedly been there once or twice in the past myself, when my mum has chastised me for releasing an f-bomb in front of my son and I’ve retorted with a similar comment (minus the BB gun, obviously).
Is it appropriate? Maybe not – but if there’s one thing I’ve learned as a parent to a disabled child is that humour is essential.
Like some other children with autism, Brody is a flight risk and doors need to be locked at all times. He also has a common fascination with water, whereby he would just walk into something out of his depth without a care in the world.
Having a child with no danger awareness is absolutely terrifying. Standard helicopter parents have nothing on me – I operate at Chinook level.
You develop eyes at the back of your head and live life on high alert, in case your child unintentionally puts themselves at risk. It’s exhausting.
Although it can be tough seeing characters like Harlan on TV, it is hugely refreshing to see our ‘normal’ portrayed in a mainstream show.
There is always the danger that people with disabilities will be stereotyped, but the risk of this decreases with raised awareness of spectrum conditions such as autism, and researchers becoming more in tune with their audience.
I am confident that more disabled characters – and disabled actors for that matter – need to be represented on our TV screens.
We are not all the same and that’s not a bad thing.
I’ll leave you with one of my favourite quotes by Van Gogh – ‘normality is a paved road: it’s comfortable to walk on, but no flowers grow on it’. Boy was he right.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
Share your views in the comments below.
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