Communication support for Aleeya's wider family
For Nasmin’s children, their grandparents’ house is a second home. Difficulty communicating meant Aleeya, who’s deaf, couldn’t join in, but the whole family have now learnt how to support her.
None of the family, including Nasmin and husband Khalil, had experience of deafness when Aleeya was diagnosed as deaf at nine months old. Their three older daughters, Humera, 10, Natasha, eight, and Reeha, six, are all hearing.
“I couldn’t accept it,” says Nasmin. “I’d insist that she could hear; the doctors had got it wrong.”
When Aleeya didn’t meet usual milestones doctors diagnosed global developmental delay. When she didn’t babble or respond to sounds, Nasmin blamed the developmental condition.
"I knew I must accept it and find out how to help our daughter."
Then another hearing test showed that Aleeya had sensorineural hearing loss; she was moderately deaf in her right ear, moderately to severely deaf in her left ear. She also had glue ear.
“I was devastated but knew I must accept it and find out how to help our daughter,” says Nasmin.
Lack of communication was already causing difficulties.
“There were tantrums and behaviour issues,” says Nasmin. “Aleeya would point and make gestures but her sisters couldn’t understand. It led to frustration all round and Aleeya wouldn’t play with them or sit with them, so they left her alone and she’d sit in her little corner.”
Then Nasmin contacted the National Deaf Children’s Society and, together with Khalil and the girls, attended a Newly Identified Weekend.
“It helped me accept Aleeya was deaf,” says Nasmin. “It gave me a positive attitude. There was so much support available.
“The weekend brought us much closer. The girls saw other deaf children with siblings, saw how valuable their role was, and they learnt some signs.”
Nasmin went on to learn Makaton and signed to Aleeya. “She began speaking single words, and saw the link between signs and speech – it was fantastic,” says Nasmin. “I taught the girls the fingerspelling alphabet and they began communicating with her.”
Then Aleeya underwent a procedure to have a bone- conduction hearing implant (sometimes called a BAHA) fixture implanted in October and when hearing aids were later added, Nasmin was impressed with the results.
“She made progress instantly,” says Nasmin. “Her speech was clearer and we could understand her far better.”
But three weeks later the fixture came out. “She bangs her head a lot due to global development delay and learning difficulties, so that’s probably why,” explains Nasmin. “I was gutted; we really thought a BAHA was the answer.”
The surgeon had put in an extra ‘sleeper’ – the screw fitted inside her skull – so they’re considering another attempt.
Meanwhile, Nasmin signed up for a 10-week National Deaf Children's Society parenting course and invited Athiya.
“It was 50 miles each way, every week, but worth it,” says Nasmin. “We brought so much home – you can read and look on the internet but it’s no good until you use it.
“We did role play to help understand the child’s feelings. We learnt that challenging behaviour results from frustration when Aleeya isn’t understood or is confused about what’s going on. I’ve learnt I must explain to her what’s going to happen and stick to the plan.”
"We bring information back for our wider family so Aleeya can form bonds with everyone."
Since then, Nasmin has become a volunteer for NDCS, supporting other parents and sharing her experiences at National Deaf Children’s Society Family Weekends.
And in January, both Nasmin and Athiya attended a National Deaf Children’s Society Family Sign Language (FSL) course.
“It’s great because it focuses on everyday words,” says Nasmin. “Aleeya now signs as well as speaking single words. I bring information back to Khalil and the girls, and Athiya takes it back to our wider family – so now Aleeya can form bonds with everyone.”
A year ago, Nasmin would never have thought things could be this good.
“Life was very stressful for all of us,” she says. “But we’ve learnt so much with the National Deaf Children’s Society, they have been wonderful, so supportive, and enabled the whole family to support Aleeya."