I have Down’s syndrome – it’s hard, but I love my life

I am Eddie Barnes, I have Down’s syndrome. 

It’s hard to have Down’s syndrome. 

I want to make choices. I want to be cool. I don’t want to have Down’s syndrome. I thought if I cut my hair and looked cool I wouldn’t have Down’s syndrome anymore, but it’s not like that. 

It’s so hard to be sad. 

Down’s syndrome stops me from speaking clearly, it burns my head hot so that it is hard to think straight. It makes me slow doing things and sometimes people get frustrated with me. I want to be fitter and fast. I want to be cool, I want to be able to do what I want. I want to do grown-up things by myself. 

I like to go out walking on my own. I like being kind to my friends and family. Mum says I have a choice, I can let having Down’s syndrome get me down and make me sad, or I can work on it and get fit and eat good food and make my life great.

I want a cool life, so I am going to work on it. I want to be strong and carry heavy things. It’s good to work in the garden and on the farm. 

My friend Jake doesn’t have Down’s syndrome. He’s autistic, and now he’s going blind, like my friend Thomas. But that doesn’t stop Thomas doing really clever things like mending his van and his boat. My friends Callum, Ben and Emma have Down’s syndrome; my friends Jake, Jade, Michael and Alfie are autistic. 

So really, I think I’m very lucky even though I have Down’s syndrome, because I have a cool family who love me because I’m cool, and I love them. 

Even though I have Down’s syndrome I do cool things with my bro like watching Doctor Who, having battles and playing computer games. With my dad I look at birds and play cricket and make cakes. With my mum I do photos. I also do woodwork with Mum and I’m learning how to use power tools. 

I had a big 18th birthday party with my big family and big friends – and my Dad did a speech saying how great I was. I loved it. Perhaps my life isn’t so bad after all. 

I love my life.

I’m supposed to be writing about living with Down’s syndrome. That, after all, was the brief, but I’ve just realised – sorry and all that – that I have no idea what living with Down’s syndrome is like. So I’m going to write about living with Eddie instead.

Edmund Barnes is my younger son. He’ll be 23 in May. Last weekend we went for a walk and then went to the pub, where we discussed Bond films, favourite villains and favourite Bond girls. In the evening we had a family outing to a concert at Norwich Cathedral – Bach – and enjoyed it very much in our different ways. Today he’s on a steam-train jaunt with friends. 

And yes, sure, he has Down’s syndrome, but that’s a medical term and I don’t live with a medical term. I live with Eddie, and Eddie is not a syndrome. He has a personality, his likes and dislikes, his various passions and a taste for spectacular jokes. Some stuff makes him happy, other stuff upsets him. I trust this won’t come as a shock, but he’s a human being.

“Can he speak for himself?” asked the doctor the other week when he was in for a check-up. “Why don’t you ask him?” my wife, Cindy, replied.  

Expectant mothers can now get prenatal screening that is 99 per cent successful at spotting Down’s syndrome. You can legally abort a Down’s syndrome foetus all the way up to birth. There’s a private members’ bill attempting to push the cut-off date back to 24 weeks, as it is for almost everybody else. Rishi Sunak declined to back it: “an individual matter of conscience,” he said. Pontius Pilate said much the same thing in another life-and-death context: he refused to make a decision and Jesus was put to death. Like Sunak, he at least ended up with nice, clean hands. 

But I’m not going to preach about abortion. Potential parents can and must make their own choices. All the same, when making any decision – particularly a life-and-death one – it’s a good idea to base it on reality rather than blind terror and bad information.

There can be two reasons for aborting a Down’s syndrome foetus: one, because it’ll make my life hell, and two, because a person with Down’s syndrome lives in perpetual hell. There’s a third – whatever will people think? – but no one should make a decision based on the prejudices of others.

To answer point one, I can tell you without an instant of ambiguity that Eddie has enriched my life. He has made it better, not worse. As for point two, let me run through Eddie’s last week:

I hope I have established the fact that Eddie really doesn’t live in perpetual hell. At the very least, his mission statement above shows that he knows more than I do about living with Down’s syndrome. He can, I trust you’ll agree, speak for himself.

And as for his parents, well, it was terrifying to begin with all right, but that’s because he was born with two holes in his heart and was frighteningly weak. He had open heart surgery at four months. Now he handles a post driver on the farm. 

When your son has holes in his heart, you’re not too worried about what his future life will be like, you’re just hoping that he has one.

Being a parent is always frightening. It’s a complex business and once it’s started it never stops. “You’re always as happy as your unhappiest child,” a friend once told me. All parents live with complications and difficulties, whether or not they have a child with Down’s. No one ever said it was easy.

Generalisations are dangerous things, and as a Down’s parent you get a bellyful. They’re very loving, they’re natural clowns – so let’s dispose of the happy idiot theory right now. Eddie, as you see, knows that he has Down’s syndrome and some days he hates it. There are fierce contradictions in his life. 

He likes smart clothes and a sharp haircut (check the blond highlights): that way people see the individual rather than the syndrome. That helps. So does that much-reviled thing called political correctness. These days people know revulsion and distaste are unacceptable. Former names for his condition – words that will not sully my screen or your eyes – are now unacceptable, along with the attitudes that went with them.

I’ve been stressing all the positives; I must give both sides. There have been problems with education, social services and medical support. We live in East Anglia, where education for children with special needs lagged behind, say, London at that time. Cindy had to fight to get Eddie what he was due. Sometimes people whose job is to get it, really don’t get it all, failing to understand that they’re dealing with a person, not a syndrome. Sometimes people who should know better seem actually frightened by Eddie as if they, rather than Eddie, were the vulnerable one.

Eddie lives at home with me, Cindy and his older brother Joseph. It’s not an abode of perfect bliss: we’re a family, and people can get fed up with each other. Eddie can row like a good’un when he’s in the mood: Lord knows where he gets that from. The weather’s freezing but he’s not going to wear his fleece, he’s going to wear that pink leather jacket that makes him look cool.

But he also enriches our lives and those of people around him. He tends to make places better and people richer… in fact I sometimes think it would be better if we put the world under the control of people with Down’s syndrome, rather than the people who do the job now. Put briefly, Eddie is kind, funny, generous, understanding and always prepared to see the best in people. He has always been especially comforting to people in bereavement.

I wouldn’t presume to give advice to any potential parent, other than to point out that it’s going to be much better than you hoped and far worse than you feared. The same is perhaps doubly true if the foetus has been diagnosed with Down’s syndrome. 

Even for such people I have no advice. Only examples. All I can do is tell you about my life, Eddie’s life and the life of Eddie’s family – and they’re all pretty much OK, thanks for asking. You don’t need to be a saint to look after someone with Down’s syndrome. You just get on with the job of being a parent. 

And sometimes, yes, life can sometimes be terrible for Eddie. As it can for you and me, and if we aborted everyone who might have terrible moments we’d solve the population crisis in six months. “I’m not odd,” Eddie said recently in a message he put out online (he’s a whizz with the technology). 

“I’m Eddie and I’m cool.”