Diana, mum to Christian: “My advice is to never give up”

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Diana is mum to Christian, 5. Christian suffered a severe brain injury that caused cerebral palsy. His sight is also severely impaired and he’s registered blind.

So tell us about Christian...

He’s always smiling and is a very happy boy. He loves company and interacting with other people, especially playing peekaboo, hide and seek and throwing and catching balls. Christian really loves music and we get a lot of learning in that way. Christian also likes playing a game with his sisters where they do Makaton signs and guess what each other is saying.”

He and his big sister Jade have got a YouTube channel, Sign Along With Us where they sign songs together. They’ve even appeared on Britain’s Got Talent!

My husband Neil and I are foster parents and help children who need temporary care. One evening we got a call about a baby, Christian, who’d suffered a brain injury called hypoxic-ischaemic encephalopathy (HIE). He’d been starved of oxygen for 24 minutes. Doctors told us if he pulled through, it was unlikely he’d make it through his first winter. And if he did survive, they said he would struggle to ever communicate because his brain damage was so severe. We brought Christian home from hospital when he was 5 weeks old really not knowing what the future held.

Communication and signing

We’d been told Christian might never smile. But at 4 months he did just that, beaming when we sang songs or when he saw people he recognised. Even though he’s registered blind, Christian can see up to around 50cm to a metre in front of him. There were then signals that he could communicate.

When he was around one, he started making noises of happiness and grunting when he was frustrated.

As he tried to communicate more with us, my eldest daughter Jade decided to try signing with him. She’d already learned some sign language and then came across Makaton after watching Mr Tumble on CBeebies. Jade started with some simple key word signs and would get up close to Christian so he could see her.

She’d do it every day, using his hands as well. He never tried to sign back but when she did it, he looked happy and would smile so she carried on. Eighteen months after she’d first started using Makaton – Christian signed back. He’d had his dinner and signed ‘finished’! After this, it was like he’d unlocked something and started doing loads of signs. He can do hundreds now. Even though it didn’t feel like it at the time, he’d obviously been taking in all the signs Jade was teaching him.

Using words

As a toddler, Christian showed so much potential – we knew it was all there – but he couldn’t speak. We’d always talked loads to him.

Even as a baby we’d turn his pram seat to face us and we’d talk about everything we could see.

Then, when he was 3, Christian started babbling. He started with ‘mama’, ‘dada’ and ‘hiya’. We noticed he also started saying words while he was signing them.

We’re at the point now where he can say two words together and he can do so many single words. He’s coming on brilliantly.

There's always something you can do

My advice to other parents would be to never give up and don’t put limitations on their children. It’s really difficult when you have a child who has a disability and doctors tell you the worst-case scenario. Sometimes you can come away from hospital appointments feeling quite hopeless.

I remember when we were told that Christian was severely sight impaired and there was nothing they could do for him. I came away feeling awful but when you look into it, there’s always things you can do and ways around it. Christian uses his sight better now and can see more detail when things are very close.

In our family life we try not to look at the ‘can’t’ and instead think, ‘how can we do it?’

We’ve since adopted Christian and we make sure he doesn’t get left out of anything. We went ice skating at Christmas and we phoned ahead to make sure we could take his wheelchair on the ice.

I’d also recommend looking for support groups. When we were told about Christian’s brain injury we weren’t given much information. I found some online parent groups and support groups who have been amazing including PEEPS for HIE and Hope for HIE.

There are so many little milestone moments you take for granted if you’ve got a child without developmental needs.

For Christian, even the simple things like the first time he held his head up a little bit off the floor are huge achievements. We cried when he did it. So rather than milestones, we call his achievements inchstones… and celebrate each and every one!

For more information and advice about cerebral palsy visit Scope.

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