‘My son’s been excluded from parties because he has Down’s syndrome

When she gave birth, Kerry Robles felt “scared” that her life was over when her son Hanaki was born with Down’s syndrome. 13 years on, Kerry’s attitude couldn’t be more different and the doting mum says that her son is the best thing that has ever happened to her.

Here, Kerry, 45, speaks to OK! about being a mum to Hanaki, challenging stereotypes and why actress Sally Phillips’ recent interview about her own son Olly, who has Down’s syndrome, resonated with her…

“Finding out Hanaki had Down’s syndrome felt like being plunged into this whole new world. We got a postnatal diagnosis and only found out when he was born, so I think it was just the shock of it all.

Kerry speaks to OK! about being a mum to Hanaki
(Image: Supplied)

I didn’t know anybody with Down’s syndrome, I just had these stereotypes in my head which I now know are a complete fallacy, but at the time I was so ignorant of all of it. I was really scared that my life was over.

But then that all changed. It didn’t happen overnight, I admit. I struggled with postnatal depression for quite a while, but seeing Hanaki go from being this little baby to a five month old who was developing his own character made me realise he was just a baby like any other baby. He had his own gorgeous idiosyncrasies and he had the best smile – he still does. I very quickly fell in love.

Hanaki is somebody that everybody immediately falls in love with. He absolutely oozes mischief and his grandad in Mexico calls him the ‘red devil’. He is a pocket rocket and because he has a shock of red hair he’s quite distinctive. He absolutely adores music and his favourite is anything by Michael Jackson, so he can be found most days singing his two favourite songs Thriller and Smooth Criminal. We speak Spanish at home and he can even sing entire songs in Spanish, which we’re immensely proud of.

“He had the best smile – he still does,” says Kerry
(Image: Supplied)

He’s also the most loving child. He’ll go over to his sister Marley unsolicited and say ‘I love you’ and gives her a big kiss and a hug. I don’t know many 13 year olds who’d be willing to do that.

But it’s not all easy. We’ve experienced countless examples of what I call casual discrimination, like being excluded from birthday parties and swimming lessons. People think it’s absolutely fine to do, but it’s really not because this is our life. It’s constant fights for – not just acceptance and tolerance – but fights to be able to do things that kids are normally allowed to do. What Sally Phillips recently said really, really stands out in my head. She said there’s an admin burden on parents and I 100% agree.

I’ve been on this journey for 13 years and what I’ve learned is that the fight for services, support, respite and financial help is never ending. It’s a like having a full time job. It’s so difficult that I’ve heard stories about marriages breaking down, of parents having serious mental health issues and of parents losing their jobs. I hope for a future where the government really takes on board the views of parents that have been on this journey and realise that families like ours have a right to the same access to things as everybody does.

Hanaki and his younger sister Marley
(Image: Supplied)

In the future, I don’t just want tolerance. Tolerance is not the right word in my mind. I don’t want anybody to just tolerate my child. I want him to be a fully accepted, included member of society. I want Naki to not have to fight to fit in, to not have to bend over backwards in bureaucratic loops to be able to access basic human rights. All of that is going to come by supporting families, by giving people with Down’s syndrome a voice and a chance and by making them more visible.

Things are changing for the better and I’m really thrilled to see that. I’ve seen models Ellie Goldstein and Sofía Jirau as well as actors like Sarah Gordy and Jamie Brewer become successful across the world. When James Martin became the first person with Down’s syndrome to win an Oscar, it was a very big moment for me. When I saw Hollywood actors singing Happy Birthday to him, I thought ‘things are changing’.

“Things are changing for the better,” says Kerry
(Image: Supplied)

All anybody wants for their child is for them to become a fully accepted and a really valued member of society, Down’s syndrome or not. Ivan Martin, James Martin’s dad, when he found out that his son had won the Oscar said, ‘All I ever wanted was for James was that he’d be happy and, I tell you what, he’s happy now.’ I thought that was great. All you want is for your child to be happy.

But it’s wrong that parents of kids with Down’s syndrome are fighting in 2024 for basic rights that other typical kids get without batting an eyelid. It’s wrong and it needs to change.”

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