Putting the attendance record straight for William
When William (7), who is severely deaf, needed time off school after an operation, mum Hannah had to instigate a change in school policy so his attendance record wasn’t affected.
As Hannah read through the letter, she was surprised to learn William’s school attendance was now at 92%. The week he was absent to recover from a second operation for his bone-anchored hearing aid (BAHA), a type of bone conduction hearing implant, had counted against his record. When only a week later she received the headteacher’s newsletter saying that children with 100% attendance would be entered into a prize draw, she immediately felt it wasn’t fair that William would be excluded from this.
“William has the perfect attitude to learning and attendance,” Hannah says. “He’s never late, follows up on learning at home and is engaged in class.” So, when Hannah saw the headteacher outside school, she took the opportunity to express her frustrations. “She was really nice, but explained they had Ofsted targets to meet,” says Hannah. She was left with the promise that the headteacher would bring it up at the governors’ meeting.
After everything William had been through with two operations, Hannah couldn’t face telling him that he was now being penalised for having time off school. “It would be so demotivating for someone who loves school,” she says.
Hannah, William and younger brother Nicholas (3) are British but lived in Sweden until October last year. “When William was two days old, one of the midwives told me they wanted the genetic specialist to look at him,” remembers Hannah. “While I was waiting, I did my own research and worked out he probably had Treacher Collins syndrome and one of the symptoms of that is hearing loss.”
Treacher Collins syndrome is a genetic disorder affecting the growth and development of bones and tissues in the face, including the ears, eyes, cheekbones and chin. For William it caused microtia (underdevelopment of the ears) and atresia (absence of the ear canal).
"It would be so demotivating for someone who loves school."
“It wasn’t till he was three months old that we finally got the right type of hearing test done,” explains Hannah. “I then found out for sure that he had a severe conductive hearing loss and he got BAHAs on a softband.” Conventional hearing aids weren’t suitable because of William’s microtia and atresia, whereas BAHAs sit on the bone behind the ear and send sound vibrations directly to the inner ear through the skull bone, bypassing the absent ear canal.
When children are around four years old, they can have surgery to implant abutment screws into the skull bone which jut out through the skin for the BAHAs to attach to. “The doctor in Sweden who fitted William’s abutments was working on a trial for new semi-implantable bone conduction implants,” says Hannah. “I wanted William to be part of that trial, but it kept getting delayed so we decided not to wait and went ahead with the surgery for the existing BAHA system last May when he was six.”
William’s surgery was quick and he recovered well. But because the bone has to knit around the implanted abutments before the BAHAs can be attached, he had to continue with the softband for three months. Unfortunately, this initially gave him headaches because there was a slight swelling at the operation site and he had to wear the band differently.
In August William began using the BAHAs on the abutments and took to them really well, so it was very bad luck that in September his brother Nicholas knocked him badly and dislodged one of the abutments from his skull bone. “By then he absolutely would not wear the softband,” remembers Hannah. “So he only had one hearing aid for four months until he could have a further operation, which was a bit stressful. It was hard for him to tell where sounds were coming from; I really noticed the change.”
In December, after the family had moved back to the UK, William had the operation. Fortunately he’d had a sleeper (extra) screw fitted during the first procedure which the bone had already knitted around so this was straightforward.
"I was really pleased – I was prepared for more of a fight."
Although William prefers the abutments to the softband, he has sometimes felt it’s unfair that he’s had to have operations that Nicholas hasn’t. Therefore Hannah felt very strongly that he shouldn’t be penalised for missing school. Luckily, the outcome of the governors’ meeting was positive and they agreed to change the rules. “Now, anyone who gets 97% attendance and above will go into the prize draw,” explains Hannah. “But if you have any absences due to a medical condition or medical appointment, you can ask the school for that not to be counted against the child’s attendance record. I was really pleased – I was prepared for more of a fight.”
Hannah’s had plenty of experience advocating for William – making sure he gets the very best services and opportunities. “I’ve done a lot of research,” she says. “We are the experts and we’ve had to be very clear about what we wanted and what was best for him.” She’s also found hearing about the experiences of other parents really helpful. “Don’t just rely on medical professionals to know all of your options,” she advises. “Use social media – there are fantastic community groups.”
Hannah’s constant struggle to give William the best chances has really paid off. “He loves school and learning, is a self-confident boy and is doing really well,” says Hannah. “He’ll no doubt achieve whatever he sets his mind to, and currently, that’s to become a vet.”