The battle for Brocha's radio aid
Esther faced an ongoing battle to get her daughter Brocha (6), who is moderately deaf, the support she needed in class.
Esther’s heart sank as her daughter burst into tears and flung herself on the couch, kicking and screaming. Every day after school she had a meltdown.
Brocha, who is moderately deaf, was frustrated because she couldn’t hear and exhausted after trying to listen all day. Esther felt a radio aid would help – but despite asking repeatedly, she was told Brocha wasn’t eligible.
“It broke my heart,” says Esther. “It’s not her nature to behave that way. But she was tired, she couldn’t even see friends or do after-school clubs.”
“It broke my heart. It’s not her nature to behave that way.”
“We were fobbed off,” says Esther. “They said it was pointless referring her to ENT. But at age two, Brocha wasn’t talking and was unaware anyone was speaking unless we tapped her to get attention.
“I told them she’d not passed a hearing test since birth – I wanted an ABR (auditory brainstem response) test under anaesthetic, but they refused. Finally, after letters from me, our health visitor and GP, they agreed.”
Just before Brocha’s third birthday, she was admitted for grommets and the ABR. “The doctors said, ‘We can see you’re a pushy mother, it’s just glue ear.'” They were quite nasty to me, but when Brocha came out of theatre, their attitude changed. They diagnosed her as moderately deaf with a sensorineural loss,” says Esther.
“They gave no further details but said an audiologist would contact us. I didn’t even know what one was! No appointment arrived so I kept phoning.
“Then a friend gave me the National Deaf Children’s Society helpline number; they sent loads of information.”
It took two months for Brocha to get hearing aids. “There was an immediate difference,” says Esther. “In two weeks she started learning to talk.”
When Brocha started at a Jewish nursery, Esther and husband Michael wanted her to learn the Hebrew alphabet and after reading up on radio aids from our information resources, Esther was convinced Brocha would benefit.
“Brocha’s clever, why shouldn’t she learn with her class?”
“I asked repeatedly but it never happened,” says Esther. “It took ages to assess her. There were two other deaf children and they taught all three out of class. I didn’t want that; Brocha’s clever, why shouldn’t she learn with her class? Every week I’d phone; nothing happened.”
Brocha moved up into Reception and every week they were taught new songs with different topics and she’d come home upset. “Singing is a big part of learning and testing in a Jewish school,” explains Esther.
“I bought an MP3 player and asked the teacher to put the songs on to link to the loop on Brocha’s hearing aids. It wasn’t fair; it was obvious she needed a radio aid. But the hearing impairment team said she didn’t need one; they said she had ‘mild’ loss, but it’s moderate, even without intermittent glue ear. But they take the average threshold of the better ear!”
At last, after more letters to the school and hearing impairment team, they agreed on a radio aid – but instead provided a soundfield system. “That’s not right for her; it helped only when class was quiet, she still missed lots and it couldn’t be used in PE and assemblies,” says Esther.
“They’d say ‘She’s managing fine,’ but they didn’t know what she was capable of.”
“I spent the rest of the year telling them she needed a radio aid.” Desperate, Esther called our helpline and we suggested they trial a radio aid from our loan scheme. “The hearing impairment team wouldn’t sign the loan form; they were too scared it’d prove it was the right thing,” says Esther.
So with the help of their children and families’ support officer, Esther wrote to the team, explaining Brocha wasn’t achieving what she was capable of and was missing out on extracurricular activities through tiredness, also mentioning equal opportunities and emotional wellbeing.
“They’d say ‘she’s managing fine,’ but they didn’t know what she was capable of. I want her to have the opportunities her hearing peers have,” says Esther.
“The day after receiving the letter, they signed the loan form and we got the radio aid in September. I couldn’t have imagined the difference; it was phenomenal! Brocha said ‘I’m never giving it back!’
"She knew all the answers, learnt so much, was joining in and enjoying it. She said, ‘I’ve got the teacher’s voice right next to me.’ Her teachers couldn’t believe the difference it made. They gave her worksheets ahead of her level, and she got a certificate for ‘beautiful participation’.”
At the end of the three-month loan the team agreed to a radio aid. An initial outdated one proved ineffectual, but after more letters from Esther, in January they got a new one.
“It’s hard to be assertive if you’re not sure what you’re asking for is right. The National Deaf Children’s Society empowered me.”
“It was worth the battle,” says Esther. “She’s a different girl, never tired or cranky. She goes to after-school clubs, is happier and has made friends.”
While the couple’s son Eliyohu (4) is hearing, their youngest daughter Soroh (2) is moderately deaf. This time Esther knew where she stood and insisted on hearing aids at three months, and Soroh is progressing well and talking. “It’s hard to be assertive if you’re not sure what you’re asking for is right,” says Esther. “The National Deaf Children’s Society empowered me.”