'Sense has been a lifeline to our family'
Co Antrim parents Wendy and Allan Newbronner struggled to find long-term tailored support for their three sons, who are deaf and have complex needs - until they were referred to Sense, which has been their 'lifeline'
IMAGINE the support you would need if your child was born deaf and had sensory and learning needs; multiply that by three and you get the challenge faced by Wendy and Allan Newbronner.
The Newtownabbey parents were keen to get their three boys the help they needed but it was always a challenge to find any long-term support.
"Sensory loss and complex needs require long-term support, especially as children change and develop over the years," explains Wendy, mother to Rhys (19), Dean (16) and Carter (10).
"A six-week course or family fun day here and there just isn't enough."
All three boys are deaf.Rhys and Carter also have autism and ADHD, while Dean has a learning disability.
Things improved when they were referred to Sense, a National Lottery-funded charity which has been providing vital support to families for five years.
"The additional needs add an extra layer to our hectic everyday life," says Wendy.
"Our sons need routine, visual aids for the day, and time to prepare if changes occur.
"There are a few organisations that support deaf children, but Sense was different because it could support our additional needs as well."
Sense was awarded almost £700,000 from the National Lottery Community Fund in 2016.
One-to-one, tailored family support was a big part of the success of this five-year project. The charity has just received an additional £200,000 grant to extend the project by two years.
"We were only referred to Sense when Carter was five, but I wish they had been part of our lives when our older two were younger," says Wendy.
When Rhys was a baby, Wendy and Allan noticed that he wasn't communicating as he should be, though this wasn't picked up by medical professionals at the time.
He was two-and-a-half years old when he was finally diagnosed with sensory neural hearing loss and given hearing aids to enable him to have some level of hearing for the first time.
"It was wonderful to see Rhys hearing for the first time, but it made me sad that he'd already missed out on so much," remembers Wendy.
"He had never heard our voices. We had been playing music to sooth him at night and he never heard any of it.
"I'll never forget walking out of the hospital with him after he got the hearing aid and a car drove past and he heard it - he was so shocked. He had to learn how to listen to different sounds and how to react to them.
"Rhys needed to use sign language and lip reading to help him communicate, so we had to learn sign language as well.
"We didn't have a clue, so I immediately got support from a speech therapist and got in contact with deaf support agencies to learn as much about deafness and sign language as I could."
At this stage Wendy was pregnant with her second son Dean. At two-days-old, they were surprised to find out that he was also deaf.
Following tests, Wendy discovered she had a rare gene which caused deafness.
"It was very isolating having two deaf children. They both had so many needs and I was always questioning myself," she says.
"No one else around me understood what I was going through and the usual baby classes weren't suitable, so I went into my own bubble and concentrated on their care.
"We joined support organisations, but it was always short-term support and there were never enough staff to really give us the help we needed."
Six years later, Wendy and Allan's third son Carter was also born deaf.
The three boys all now attend a school for deaf children and have lots of friends there, but it was always difficult for Wendy to find suitable clubs or social activities.
"The boys love to spend time together as a family, but it has always been difficult to leave the boys anywhere apart from school," says Wendy.
"From the moment we got referred to Sense it felt like a weight was lifted off my shoulders.
"They organised for a family support officer to come out to the house and spend time getting to know us and worked out what support we needed.
"It was the first practical support we had received that I didn't have to jump through hoops for.
"They gave us one-to-one support when we needed it, they are always at the end of the phone and the boys love going to the after-schools club.
"Being able to connect with other parents in similar situations at events and courses was brilliant for us as well - although I still haven't met any families quite like ours, our situation is so rare."
Sense will be able to continue to fund a family support worker in each Health and Social Care Trust area thanks to the additional National Lottery funding.
"The families have been involved in shaping the project the whole way through and that's given them more confidence and allowed us to address real needs, rather than what we assume they need," explains Colette Gray, head of services at Sense.
"When Covid hit, our families were so vulnerable and they had new needs that we had to focus on.
"For a lot of the children who need routine, removing their connection with us when the pandemic started would have been devastating, so we adapted, moved online and helped families access technology and play resources at home.
"Receiving the extra funding and being able to continue supporting these families as we move out of lockdown will make a very real difference."
Wendy thanks Sense for the support offered during the panic.
"I don't think we would have got through the past year without their help," she says.
"When the pandemic first hit we were shielding and when the schools shut we really struggled, but Sense were amazing.
"Any family that receives support from them is extremely lucky - they have been a lifeline to my family."
Find out more about Sense, its services and how to support its work at sense.org.uk