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Making decisions for baby Finnley

Photo: Finnley’s story: how his parents claimed disability living allowance

When eight-week-old Finnley was diagnosed as deaf, parents SarahLouise and Mark had lots of choices to make for him, including whether to apply for Disability Living Allowance and how Finnley would learn to communicate.

Sitting with other parents of deaf children in Belfast, Sarah-Louise and Mark couldn’t believe what a relief it was to be surrounded by those who understood how they felt. They knew they had lots of decisions to make for 11-week-old son Finnley, about technology, communication and their finances, but they now felt supported and knew they could do it.

They first suspected something wasn’t right when Finnley failed his newborn hearing screening. “We took him home and as the days went on I realised that something might be wrong,” Sarah-Louise says. “It’s quite noisy here with Finnley’s older two siblings and he wasn’t really reacting to sound.”

At eight weeks old, Finnley’s hearing was retested. The audiologist confirmed he was moderately deaf in both ears and that they’d hear from ENT in four weeks to get his hearing aids. “I was shocked,” she says. “The audiologist hadn’t given me any information. I stood in the hospital car park and thought, ‘My eight week old can’t hear me, what am I going to do now?’”

Sarah-Louise went home and told Mark what had happened. “I didn’t want to believe it,” he says. “I thought maybe they’d got it wrong and brushed it off.”

But while Mark wanted to pretend it wasn’t happening, Sarah-Louise accepted the diagnosis quickly and was prompted into action. “I’m not somebody who can sit still,” she says. “I went on Google that night and found the National Deaf Children’s Society’s main Facebook page and the Northern Ireland one. I clicked on an advert for a Newly Diagnosed Weekend event in two weeks’ time and booked on.”

Sarah-Louise and Mark explain that the event changed how they felt. “It was then I finally accepted Finnley’s deafness,” Mark says. “Listening to the speakers and getting to meet other families, it reassured me everything was going to be fine.”

“It was so emotional,” Sarah-Louise adds. “Finnley was the youngest child there. I think I had been running on adrenaline until then but when they asked me to tell my story the emotions hit me like a bus and I burst into tears.

“One of the other mums was saying, ‘Did I drink too much coffee? Is it my fault?’ It was so reassuring to hear another mother saying the same things I was thinking. Then to see the three deaf adults talking at the end, one girl who’s a barrister, one who’s just completed her A-levels and a man who’s an Olympic tennis player. That was incredible.”

Since the event Sarah-Louise and Mark have felt confident in making more decisions for Finnley, including deciding to apply for Disability Living Allowance (DLA). “We didn’t know we’d be entitled to anything like that,” Sarah-Louise says. “We’re a family who have never claimed anything so it didn’t even cross my mind.

“You assume a baby’s a baby and you’re not supposed to leave them alone anyway. But it’s not until you sit down and fill in the DLA application form that you realise all the extra things you have to do. Little things like if he wakes up in the night you can’t soothe him with sound, you have to physically touch him. Then all the trips to the hospital which is a 45 minute drive away and all the diesel that uses. We used the National Deaf Children’s Society’s booklet to help us fill the form in.”

Happily the family later found out they had been awarded DLA and encourage other families with young children to apply too and not to think they have to wait until their child is older. The family also made the decision to bring Finnley up bilingual using speech and sign language.

“I knew his deafness was permanent, it wouldn’t go away and it could get worse, so we decided on the bilingual route,” SarahLouise explains. “I’m a healthcare assistant so I know a little about the Deaf community. I wanted Finnley to be able to thrive in both communities, to give him choice. I want him to have deaf friends and be able to communicate when he’s not wearing hearing technology.”

“I was all for it,” Mark agrees. “Anything so he can progress as he gets older.”

The family have enrolled on a British Sign Language course through a charity called Sound Friends and are teaching their other children to sign too. Sound Friends also run a peer support group which the family attend. “Everybody helps each other along in the journey and that’s priceless,” Mark says.

“Everybody who has met Sarah-Louise has been stunned at how quickly she gathered information. It’s made it so easy for the whole family, having the support we have now.

“When Finnley was first diagnosed I didn’t want to believe it. It’s so hard to accept and it’s frightening. There’s no right way to react but the quicker you accept it as a parent, the quicker you can move on and make things better for your child. Finnley’s fantastic, he hasn’t let his disability hold him back one bit. He lights up any room.”