The lived experience of Glue Ear Listening to the voices of mothers and young people [email protected].

The lived experience of Glue Ear

Listening to the voices of mothers and young people

[email protected]

Session outcomes:

* to develop an awareness of the impact of glue ear on students

* to consider approaches to research into glue ear

* to identify opportunities and alternative strategies for meeting their different learning needs including social, emotional and mental well-being

* to identify your own increased understanding of glue ear

Impairment

Is the functional limitation within the individual, caused by physical, mental or sensory dysfunction. It is defined often within a medical context. (Goodley 2011:8)

Disability

Is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical or social barriers.

Disability is understood as an act of exclusion: people are disabled by contemporary society. (Goodley 2011:8)

Childhood Chronic Illness

Occurs in children 0-18 years, medical diagnosis, present for 3 months or expected to last longer than 3 months or has occurred more than three times or more during the past 12 months. Not (yet) curable. (Mokkink, et al., 2008)

Otitis Media/Glue Ear

www.abc.net.au/health

Social Skills

• Joining in groups

• Understanding others

• Aspects of exclusion

Not a diagnosable special need

School’s now sort of helping now they know funnily enough that my hearing’s dropped, because ‘cos I’m getting a hearing aid so it’s actually quite good… because now they’ve moved me in different spaces so that I have my good ear facing the teacher and things… so in the input I can actually hear what’s happening instead of missing out things….(Russell School: 1-5)

one of our teachers, she’s not very nice and she won’t help me at all and she won’t give me like erm anything to say like, “Is there anything you need?” “Are you OK?” or “Do you need to come closer?” or .. One of them’s not very nice. (Stewie 2:34-36)

Parent’s comments

So I say let me talk to you about Russell’s ears and some of his social communications, so let me talk you through where I see what he needs. So in the future then they know and there can be no miscommunication. But he said, “No, No, No, I know all about glue ear.” (Jane, 1: 28-33 )

She needs to sit at the front and she needs to sit in the middle, so there’s no sort of sound coming in and there’s no sideways distractions coming in and she can hear what’s being said and that there’s no other noises in between her and the teacher.(Caz, 3: 13 19-)

I had two pre-schools where he joined and they subsequently said to me, “He can’t stay here because we can’t deal with him constantly vomiting and us having to deal with it, we don’t have enough staff ratio.” (Wendy, 1: 33-36 )

Hearing Environment

Classroom Environment

Classroom Environment

Implications in the classroom

• Hearing and language processing

• Attention skills

• Comprehension and Pragmatics

• Behavioural issues

..everyone’s talking over each other …. You can hear it all, if you focus on one thing then you can hear it, and if you focus on another bit then you can hear it. C: So what do you mean by focus on one thing?D: So if you stare at someone, and it’s like, “I’m choosing to listen to you.” C: What about when there’s a load of people talking? What happens then?D: Oh that’s annoying, I think that everyone finds that annoying when you’ve got a load of people trying to talk to you. C: So what happens?D: So like Shut Up!! Talk to one person. (Daisy: 5, 27-35)

I can't hear you

…teacher suggested that I should go outside and erm that really helped me because I went outside with some people and you had to be quiet there so that were really good, and once when I had a test I went in the staff room and there was no noise and that were real good for me ‘cos there was no noise at all. (Stewie: 2, 42-45)

Tinnitus

S: Erms mine’s like …. like … not the best because it’s like painful and stuff and all the noise and stuff, all I know is that it’s painful. It annoys me.C: Does it make a particular noise?S: It makes like a loud buzzing noise or like an nnnnn and you have to bang your ears to stop it. And sometimes it won’t stop and sometimes it will. It’s like buzzing in my right and like a screech in my left. (Stewie: 5, 19-25)

Just because he gets fed up with it so much and he’ll say, “Chop me ears off”, he says that sometimes, erm it, it’s sad that really isn’t it… really sad, suppose that that’s the thing for me… that sometimes …. he seems quite sad ….. and that really upsets me. (Lois: 12, 16-18)

Implications for hearing

Tumble Tots and they used to get this parachute out and they’d put all the kids in the middle, and they’d wrap it up and then spin them and they’d vroom round. But he was absolutely terrified at the thought of going in this parachute. And I just couldn’t understand why all these kids were so … it was like the highlight of their week when the parachute would come out and for Peter it was the worse thing you could have asked him to have done… (Wendy: 2, 31-36)

he finds group settings so difficult ‘cos it’s so noisy and he can’t differentiate the sound therefore it’s hard, (Jane: 2, 16-17)

When he was little he didn’t like noises, didn’t like noisy environments AT ALL, All the time. As a toddler any kind of loud. When he was little he did it all the time, hands over his ears, (Jane: 3, 10-13)

How does Glue Ear affect children?In some children, the only sign of glue ear is a change in

behaviour. This may include:• Becoming tired and frustrated • Preferring to play alone • Not responding when called • Falling behind at school • Behavioural changes can often be mistaken for

stubbornness or rudeness. As a result, many children with glue ear are misunderstood or labelled as "difficult."

• Reverse letters and have poor spelling• Have difficulty learning phonetics• Have poor reading comprehension• Appear to be poorly organised, work slowly

[email protected]

Thank you for participating.

Publications

Capewell, C. (2014a) The Hearing Environment. Support for Learning, 29(2), 102-116.

Capewell, C. (2014b) Hear today but may not tomorrow – the implications of Glue Ear –research findings. The British Psychological Society, DECPDebate, 150, 27-31.

Capewell, C. (2014c) Temporary but not trivial: Language and reading skills in children with ongoing glue ear. Assessment and Development Matters, 6(2), 24-27.

Capewell, C. (2014d) From Ears to Experience: Insights into Living with Long-Term Glue Ear. CORERJ: Cambridge Open-Review Educational Research e-Journal, 1(1), 40-58.

Capewell, C. and Ralph, S. (2014) Living with Glue Ear: Researching the educational needs: Listening to the voices of a mother and child. (Accepted).

Ralph, S. and Capewell, C. (2014) A real voice in research for disabled people and their families. In Naukowa, R., Bragiel, J., Gornicka, B. (eds.) Parenting in the context of disability and neglect. Poland: Uniwersytet Opolski, pp. 47-61.