Sybil’s school routine
Listening fatigue affects Sybil (5), who is profoundly deaf, every day, so the family makes sure that she has the routine and support she needs to succeed at school.
Participating in her mainstream school Reception class was sometimes a little tricky for Sybil and took a lot more concentration than it did for her hearing classmates.
“She’s always been happy with school,” says mum Holly. “She always wants to go. If she ever doesn’t, it’s usually just because she's shattered. Her main problem is concentration fatigue. She does get very tired, because she listens so well all day at school.”
“It’s hard to explain to people, because all children get overtired and all children have tantrums when they’re tired. But it’s this brokenness that she gets that’s heartbreaking,” explains Holly.
Maintaining a good routine to help Sybil succeed at school shapes their daily lives. "Routine is so important, especially for her, because she really does need to be asleep quite early to be able to manage the next day,” Holly says. “So when she gets home from school, she gets changed, plays with something quiet like Lego, watches TV or looks at books, and then has her tea. Then she has some stories, a bath and bed.
"Routine is so important, especially for her, because she really does need to be asleep quite early to be able to manage the next day.”
“It’s super boring but we need to do it that way. If there’s any change to our normal routine, she gets so upset because she’s so tired, and it has a knock-on effect the next morning. She doesn’t want to get dressed, she won’t have her processors put on, and when we do manage to get them on, she screams because everything’s too loud and keeps taking them off. It can take a very long time to coax them back on and that kind of tiredness impedes her school day.”
Managing Sybil’s listening fatigue is, however, something that Holly feels they’re getting more of a handle on as Sybil gets older. “We’re constantly assessing what she can and can’t do after school, because it can be too much,” explains Holly.
“You can’t be afraid to be the bad guy and say, ‘No, we can’t go to someone’s house,’ or, ‘We can’t go to the playground tonight.’ I can see where it will lead and it’s not going to be good for her.”
Navigating Sybil’s relationship with her hearing little brother, Francis, can also be a challenge. “We’re learning as we go,” says Holly. “Our son’s two-and-a-half and you never quite know how to explain her tiredness to him. At the moment, a lot goes over his head."
“I think it’s knowing when to separate them, because there are times when Sybil can’t handle how loud he is. They do play really nicely together, they’ve got a lovely relationship, but there are times when you can’t have them together because he’s being too loud and it’s horrible for her.”
Knowing how tired Sybil gets after a long day of concentrating, the family were also determined to make sure that she had as much support at school as possible. “I think the most important thing is that she has access to what’s being taught in the classroom, and she feels included and doesn’t get left behind,” Holly says.
With an Education, Health and Care (EHC) plan in place, Sybil benefits from a teaching assistant, deaf aware teachers, a soundfield system, a radio aid, and adaptations to the classroom to improve acoustics.
“Everything was already set up for her which meant that, even though she’s very tired and does struggle a lot with concentration fatigue, it affects her much less than it could,” says Holly. “It’s made it as easy as possible for her.”
Having a plan in place for Sybil at school wasn’t the only challenge the family faced this year. Like many other children, Sybil’s transition from pre-school and her Reception year were disrupted by school closures and periods of self-isolation due to the pandemic.
“The home schooling materials we got from the school were good, but it was a lot of videos and she couldn’t hear them very well,” Holly says. “In the end I just
watched all the videos beforehand and explained to her what she needed to do.”
Sybil’s EHC plan meant that, for the most part, she continued going into school. “It was obviously a much smaller group, so it was a lot easier for her listening-wise and she did enjoy it,” says Holly.
Sybil takes her deafness in her stride at school. “She has a confidence and pride in herself supported by the teachers teaching the other children about deafness,” Holly explains. “You can’t expect five-year-olds to read between the lines of what somebody needs in terms of deaf awareness, you have to be really clear, and children at that age are really accepting of things.”
The ways in which Sybil’s listening fatigue impacts her will change as she gets older, and managing it will continue to be a challenge for the family. But for Holly and dad Adam, being proactive in providing the right environment for Sybil, both at home and at school, is their top priority.
“You know your child. If you can see them struggling don’t be afraid to have those conversations with the school or at home to work out what you need to put in place to make life easier for them,” says Adam.