Cork mother whose son has special needs: "I would not change him for the world..."

Cork mum Claudia O’Sullivan tells COLETTE SHERIDAN about learning to care for a child with disabilities, and the lifeline thrown to people like her by the Jack & Jill Foundation
Cork mother whose son has special needs: "I would not change him for the world..."

LOVING BOND: Claudia O’Sullivan and her three-and-a-half-year-old son Odhran Andrews, who live in Eyeries in West Cork.

YOUNG Ódhran Andrews, who has special needs, is at his happiest when he’s on horseback, says his devoted mum, Claudia O’Sullivan.

This mother and her three-and-a-half-year-old son live in Eyeries in West Cork.

Ódhran, who has a rare hormone deficiency known as septo-optic dysplasia, attends Bantry Bay Pony Trekking and is in his second year of pre-school at Coomhola Montessori Pre-School.

He is encouraged to push himself to his limits and it has paid off, says Claudia.

Her son is non-verbal but very good at communicating through sign language. He is “trying to get the words out. If he doesn’t, he doesn’t and if he does, great. Ódhran’s consultant says he always defies the odds. He is so resilient.”

Ódhran was born on Claudia’s 21st birthday. She is a single mother who had no idea that there was anything wrong with her child until he was diagnosed two weeks after he was born.

“He was born a big sturdy baby, weighing eight pounds and seven ounces. I tried breastfeeding him but he wasn’t taking enough milk. His blood sugar levels started dropping. He needed a drip as he was getting dehydrated.

“He was brought to the neo-natal unit (at CUMH). I thought he’d only be there for a matter of days, but the days went on and on.”

Ódhran was constantly throwing up his bottles, and doctors decided to do an MRI scan on his brain, as well as other scans. They found a lot of abnormalities with his brain and under-development.

“Our bodies produce eight hormones but with Ódhran, three of those were not working,” explains Claudia. “His vision is impaired. We don’t know how much yet.

“One of the doctors said that Ódhran could turn out to be bad at maths - or he could be non-verbal and in a wheelchair.”

While Ódhran can’t walk on his own, his mum is determined not to consign him to the wheelchair that she was given.

Thanks to hormone replacement administered through liquids, Ódhran “has turned a corner, he is like a new child”.

Claudia adds: “He can drink himself. I was very glad to see the back of the tube. 

"He can take steps if I’m holding his hands. He won’t walk by himself. I think a lot of that is to do with his vision. There’s a fear factor there. But he can sit up by himself and he can move with his tummy.

“He’s very active. I’m hopeful for him because he has come on so much in the past few years. He is reaching his milestones - at his own pace.

“I’m obviously very grateful for the wheelchair. But it won’t be used unless it’s absolutely necessary. I have put a lot of time and energy into pushing Ódhran to his maximum ability. He has proven to me that he can do it. He’s a very sociable child, he loves attention and affection.”

However, Claudia admits that she was shocked when her son got his diagnosis and doubted that she’d be able to look after him.

“He was in hospital for two months. I was terrified. I was crying to the nurses, saying that I could not take Ódhran home as I didn’t have it in me to care for him.

“I would see his chart in hospital with all the times for the medication. It was around the clock. I was saying, ‘what the hell is my life going to be like?’ But then, when I got him home, I grew more confident and knew what the meds were for. I was like a nurse.”

Claudia has a philosophical attitude to looking after a child with special needs. “I’m so positive now. Que sera, sera, whatever will be, will be. I was meant to be a young mom and I was meant to have a child with special needs.

“I have the time and energy to give to Ódhran. I would not change him for the world because he is just outstanding. He’s my best friend.”

Ódhran will probably do another year at pre-school. Claudia doesn’t know yet what school he’ll attend.

A qualified beautician, she works part-time, on Tuesdays and every second Saturday. “It’s important to keep a piece of me,” says Claudia.

“Thanks to the Jack & Jill Foundation (which provides respite for the parents of young children with complex and/or life limiting conditions) I’m able to get out.

“I’m happy Jack & Jill are there but at first, I almost felt guilt as a mother, letting someone come in and help me. It was a hard circle to break. But once I got past that, I just got on with it.

“The bigger part is about accepting that it is what it is. If I hold myself back, then I’m holding the child back. I have to keep going and accept that I have a child with special needs.

“I am Ódhran’s voice. He has great understanding. If he wants something, he will let me know what he wants, using sign language.”

The Jack & Jill Foundation is urging people to go ‘Up the Hill for Jack & Jill’ during October and donate €18 to support local families who have an uphill challenge in caring for their very sick child at home every day.

The charity supports 396 families across the country. As well as providing respite support, Jack & Jill provides home nursing care and end-of-life care for very sick children up to the age of six.

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