We’ve found sharing our own stories and listening to the experiences of others a great help; for exchanging of tips and advice, and moral support. A diagnosis of deafness in a child may be very unexpected and for families, making decisions about something that may be so unfamiliar, can be daunting. Coping with the day to day challenges can make it feel a lonely place at times. Here are some of our stories and we’d be delighted if anyone else wanted to share their experiences too.
Alison Davis, mother of Daniel, born in 2006.
Anna Jenkins, mother of Wilf, born in 2006. Part 1: Initial diagnosis
Wilf was diagnosed with a severe/profound hearing loss when he was three and a half weeks old. He’d failed in his two previous hearing tests and our own efforts, banging saucepans behind his moses basket, had led us to believe that there might be a problem, but still, the diagnosis swept us away from the beach and out into an unfamiliar sea. There was no deafness that we were aware of, in my or Stephen’s families, and our toddler, Nancy, was hearing.
What lead us to dry land again, in the first few days, was the incredible support that we received from Rob Low at Paediatric Audiology and then from the miracle that was our ToD, Karen Gazeley. I simply cannot imagine how we would have found our way, without their support, wisdom and kindness.
We joined the Springboard group, which introduced us to other hearing parents with deaf children and also deaf parents whose children were hearing and those connections were the start of our realisation that Wilf’s journey might not be the one we had envisaged for him, true, but it was just going to be different, no better, no worse, just different.
We struggled through the joys of Wilf’s infant hearing aids – the constant feedback, his insistence on pulling them out (throwing one over the side of the pier) and then the battle of the ear infections that disrupted his hearing so badly, when he had grommets fitted. We explored the possibility of a cochlear implant, at the Southampton Auditory Implant Centre but we were perfectly happy when they recommended not implanting him because his hearing was absolutely on the borders of where they felt he would gain more access to sound with an implant, as opposed to his hearing aids.
Then suddenly, over the course of 24 hours, his hearing dropped dramatically and never came back. Our happy toddler, who was slowly developing spoken language, became a very angry, frustrated little boy, and when Southampton offered to fast-track him to implantation, we went for it. Wilf was implanted on his left side at 21 months old.
Part 2: After Implant, Signing and School
It was amazing to watch his progress after switch-on but nearly 2 years of disrupted hearing had left Wilf with a language delay that we all had to work hard on to overcome. In those pre-school years, Wilf was frequently frustrated in his interactions with his peers and he often resorted to hitting or biting to get a reaction from his hearing friends – when Wilf walked into the playground, it cleared! We’d always signed a little with him and a group of parents came together to have evening classes with the lovely Caroline Palmer, and this really helped in those early years for Wilf, but we felt that he was going to need the support of a Statement of Special Educational Need, to provide more help for him in the classroom, and thanks to the incredible support of the NDCS, we were successful in our application.
Throughout those pre-school years, our Teacher of the Deaf was an amazing support, guiding the nursery on how best to help Wilf build friendships as he prepared for school. We also learnt so much from the brilliant families of deaf children that we met on the way. One thing that I’ve definitely learnt on this journey, is that problems seem a whole lot lighter when they’re shared.
Gradually as Wilf’s language improved, things settled down and by the time he started in his mainstream primary, he was a confident, sunny chap again. We’d chosen the school for its acoustics, and with the Soundfield System fitted into his classroom, an FM system and his classroom support in the mornings, he managed really well. It wasn’t always plain sailing but the primary school years were, by and large, a success and Wilf built a great group of friends through school and also through the football teams that he plays for. Sport is enormously important to Wilf, and particularly through football, he has built a city-wide group of friends, who see Wilf, first and foremost, as a great footballer and friend.
Making the decision about which Secondary School to send Wilf to, was probably more of a worry. We knew that the listening challenges of a timetable that meant he’d be moving from classroom to classroom, teacher to teacher, for every subject, would be huge. There would be no chance of a Soundfield System in every class and he’d have to deal with delivering and collecting the FM system from each teacher in each class. Our dream would have been for Wilf to be taught in small classes, and a family member did offer to help with fees if we wanted to send Wilf to a private school.
We thought long and hard about it, but decided in the end that having local friends with him at school, was the most important thing for Wilf, and we got great support from the secondary school that we chose, with a number of ‘taster’ visits to make Wilf feel more at home before the big move.
We’re a couple of years in now and by and large, I’d say that Wilf is in a good place. There have been significant challenges for him and for us. After a bit of a battle with the L.A., it was agreed that Wilf should have one to one support from an I.N.A. (Individual needs assistant) for more than half his timetable. She helps with the core subjects and also the language-rich classes, such as History and Geography. I have learnt to be ever vigilant about what help is actually being delivered and have had to engage with the Senco on a number of occasions to ensure that Wilf is supported appropriately. At the end of his first year, Wilf rejected his FM system, insisting that he could hear well enough without it. We all tried our best to persuade him to stick with it, but when he confessed that he’d been switching it off in class, we had to accept his choice – and sitting at the front of class and having the help of his INA, he seems to be coping pretty well.
The most important things for Wilf are still his friendships and his football and both have thrived. Wilf’s school team made it all the way to the final of the National Schools Cup and Wilf even scored in the final – so that convinced him he’d chosen the right school! The move up to secondary can be daunting for any kid (and parent) and whilst it takes a bit of effort, building good communication between home and school has been key.