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The fight for the right school for Nathan

Photo: Nathan's story

Helen fought for years to get a school that could support the needs of her son Nathan, 13, who is profoundly deaf. With the National Deaf Children’s Society right behind her, now he’s making real progress.

Nathan and his twin Fraser were born prematurely and with cytomegalovirus (CMV), a virus that can destroy hearing. Fraser was given a drug to cure the virus, which saved the hearing in one ear. But Nathan couldn’t take the drug because his liver couldn’t tolerate it – and just six weeks later he was profoundly deaf.

With their older daughter Charlotte born hearing, Helen and husband Iain had no experience of deafness.

“I didn’t understand where to go, what to do,” says Helen. “Very little information was given to me. It was just ‘here are some hearing aids, go home and put them on his head.’”

“You have to do lots of research and become a specialist in your child’s needs.”

Because Iain was working abroad, Helen often had to cope alone with newborn twins and toddler Charlotte. She learnt to sign with Surrey Deaf Children’s Society (SDCS) and aged two, Nathan had a cochlear implant, though it didn’t help. Fraser’s mainstream nursery welcomed Nathan and did their best to support him, but finding a primary school proved a real battle.

“Nobody, not even the Teacher of the Deaf (ToD), is allowed to recommend a school,” says Helen. “So you have to do lots of research and become a specialist in your child’s needs.”

Nathan started at a local mainstream school that had a deaf unit with eight children. He was the only deaf child in his class, he was really unhappy. He had 20 minutes each with the ToD and speech and language therapist weekly – but Nathan needed to be with them 90% of the time.

“In class he couldn’t keep up, it wasn’t set up for him,” says Helen. She applied for Nathan to go to a specialist school for deaf children 60 miles away, but the local authority refused.

"We do not have any schools that can meet his needs."

Also, they decided not to give him a statement of special educational needs. “Luckily the deaf school advised us to contact National Deaf Children’s Society and with their support we launched into the baffling world of the education Tribunal system to appeal the decision,” says Helen.

Six months on Nathan got a statement and Helen also appealed about the school placement and amount of support offered. The local authority submitted only one sentence: “We do not have any schools that can meet his needs, and will not allow the requested school as it is too far away.” With National Deaf Children’s Society help, Helen got independent reports for Nathan (speech and language therapy, occupational therapy and educational psychology). She also moved her family to a rented house closer to their chosen school.

Just a week before the Tribunal hearing, the local authority conceded – Nathan could go to the specialist school. Helen then watched his transformation from a lonely, withdrawn little boy into a happy, confident six-year-old.

But just a few years later they went through the same turmoil for transition to secondary school.

“At the end of Year 5 I got a letter saying ‘we’ve found him a school for next year’ – without even asking me,” says Helen. “They used the same statement from age four; it hadn’t been updated for six years. I had another fight on my hands so I contacted the National Deaf Children’s Society and went to Tribunal. One week before the hearing, the local authority applied for him to attend yet another different school. The case then wouldn’t be resolved in time, so they wanted an adjournment, meaning Nathan would be out of school for a year. I was so shocked they’d do that.”

“At last Nathan could keep up his progress and be happy.”

A two-year battle ensued, with Nathan spending an extra year at primary school. With the National Deaf Children’s Society support, Helen told the director of children’s services she’d report them to the Local Government Ombudsmen.

“It took a lot of threatening and letters but finally we got the statement naming the school we wanted,” says Helen. “At last Nathan could keep up his progress and be happy.

“It’s been hard. There’s been huge disruption to our family. It’s hard on the other two children because they’ve had to make many sacrifices. The financial burden adds stress, paying for independent assessments and uprooting our family to be able to get Nathan into the right school. Every time you open your email you dread seeing a local authority one. You try to put on a happy face for the children and it’s a relief when they’re in bed and you can yet again go through your paperwork. It puts a strain on your marriage too as it seems that’s all you talk about and you don’t always agree.”

Nathan is five years behind Fraser, partly due to his implants. Age eight, it was found his first one had never worked properly, then a re-implant and a second implant proved faulty so he had a third successful set nine months on. But Helen believes he’d be much further behind without the right school.

“Getting the right support for Nathan has been a continuous uphill struggle but it’s worth it,” she says. “As a parent you want your child to be happy. It’s wrong you should have to fight for that, for them to have a future.”