Our sons and their new signing class
After years of pushing for one-to-one British Sign Language (BSL) support, Leigh and Hetty share how their local authority listened and put in place a successful trial of a one-of-a-kind deaf class.
Mum Leigh has been asking for adequate support for her son, Rafael (12) since he was identified as deaf at his newborn hearing screening. “He was born with a severe hearing loss and was initially aided at four weeks old, but progressively lost more hearing,” says Leigh.
“At four, he had bilateral cochlear implants fitted but he refuses to wear them. We’ve had all the equipment taken off us and now he’s profoundly deaf with no hearing or technology. He has a very rare genetic condition, epilepsy, autism and a learning disability. He’s deaf, tube fed, requires full-time care and is non-verbal like his friend Nat.”
Nat’s mum Hetty had also been working to get her son (10) into the right school setting and met Leigh through their shared Teacher of the Deaf (ToD). “Nat’s got a moderate to severe hearing loss, he’s autistic, has special needs, learning disabilities and is pretty non-verbal,” says Hetty. “He was identified at his newborn hearing screening as well and wears hearing aids and uses a radio aid at school.”
The boys’ additional needs mean that they attend a special school that historically hasn’t had any deaf provision. “The boys’ special needs school runs from primary right through to secondary, with children with a mixture of needs,” explains Leigh.
“When Rafael started at the school, they had support in place for those with visual impairment but no deaf provision. My biggest worry was that they would just keep on offering Rafael Signalong [a sign system] instead of BSL. We spent the first three years battling with the school that Signalong wasn’t adequate because it’s not a language. Deaf children need BSL.”
Hetty found herself in a similar position, with Nat being offered Makaton when they lived in England and Signalong when they moved to Scotland. “When Nat was first diagnosed, we were told not to sign with him because he was going to talk and would be in mainstream school,” Hetty remembers.
“But he wasn’t catching up with speech. When he was diagnosed with autism by Deaf Child and Adolescent Mental Health Services (CAMHS), they said to use speech and BSL with him.
“It’s been a huge fight to get him access to BSL, but as a family, we decided to pursue it because he’s responsive to signs. It’s the only language that he’s ever said three words in. We’re determined that he deserves a language and BSL is his language because he’s deaf.”
Leigh remembers having similarly difficult conversations with professionals, who insisted that Rafael would use speech. “We were told the same when Rafael was moving from hearing aids to cochlear implants,” says Leigh. “They said we should wait and soon he’d be speaking.”
Leigh and her family ignored the advice. “Now Rafael communicates fully with BSL and he’s a great signer, but I wish we’d started learning it even earlier,” explains Leigh. “It wasn’t until he got into primary school that we started to insist that he needed somebody with him that can sign.
“I’m a social worker which has helped us in terms of knowing our rights. As soon as I could, I requested a coordinated support plan (CSP) and argued for one-to-one support for Rafael with a fluent BSL user as part of that plan. We had to get a lawyer involved because there was a lot of opposition from the local authority who argued that he didn’t need BSL.
“It was at that point that I told Hetty that she needed to do the same. We got both the boys CSPs with agreed one-to-one BSL support at all times to support their ability to access school and the curriculum. The CSPs mean that we can take the local authority to Tribunal if they don’t give the boys the agreed support.”
Once Nat joined Rafael at the same school, their parents asked for them to be placed in the same class because of their CSPs. But Hetty and Leigh weren’t the only ones in a similar position. “We got Rafael and Nat in the same class together and found out from the ToD that there are actually 12 deaf children at the school,” says Leigh. “Eventually the local authority and the school management team decided to trial putting all the deaf children in one class with full deaf provision and BSL support.”
“It’s isolating not being able to speak to anyone around you,” explains Hetty. “Even when Nat was just with Rafael, he had someone to look up to and who he could see signing too. It was amazing. You realise you’re not the only one.”
With the local authority, school, new deaf staff and parents all working together, the class has been a success. “The nicest thing about it is that there are now three members of staff that are also deaf with their first language being BSL. Our boys have gone from being on their own to full immersion into BSL and that has made such a difference,” says Leigh. “The children’s development is incredible. Rafael’s always been a good signer but since being in the class he’s improved immensely. He’s learning to read, he’s starting to pick up pens and pencils for writing, he’s counting and he’s doing basic curriculum stuff that he’s never had access to before.
“The fact that my 12-year-old son is accessing the curriculum for the first time is enraging and brilliant at the same time. He’s also started eating for the first time in eight years. The improvement in him has blown my mind.”
Hetty has also noticed a big difference in Nat. “Within two weeks of the BSL class starting I noticed a difference in Nat,” she says. “He was calmer, he was signing more and was more receptive, and his behaviour was better. We get told that he’s making friends in class or interacting with other children, which he’s never done before. That, to us, is amazing.”
Summer 2023 Families magazine