Swimming gives Hayley earache

It’s August and the swimming season is in full swing, which for Hayley and lots of other deaf children invariably ends up with a trip to the doctor…

Thursday afternoon, at home

Hayley’s appeared in my office doorway, her palm pressed against her left ear, shoulder hunched up protectively, pain etched on her face. I’ve seen that look before.

“How long’s it been hurting?”

“On and off since yesterday,” she replies, allowing me to give her a hug (only acceptable on special occasions these teenage days, only brief and definitely not in front of anyone else).

side profile sick young woman having ear pain

Hmm, that was the day Hayley and her mates went swimming. Just before that, she’d taken her little nephew to the local pool and before that she’d been off at Cub camp as a young leader, which had involved many water activities.

It’s the same most summers, or whenever there’s lots of swimming. Sometimes one or other of her ears begins to hurt then subsides after a day or so, other times it turns mean and develops into an ear infection. I know many deaf children pick up ear infections easily when swimming, and Hayley’s no different.

She isn’t supposed to get her ears wet at all because she’s had mastoidectomies to remove cholesteatomas in both ears, so when she goes in any water (even the shower) she wears swim moulds made for her by the audiologist. There’s often a full blown panic when she’s packing to go away somewhere and suddenly can’t find her swim plugs.

But even so, however careful Hayley is, after lots of swimming, ear infections have a tendency to creep in.

I remember a long awaited holiday in Greece 10 years ago – it was blissful, most days were spent in the pool with her two brothers. But then the ache began, by bedtime it had turned into searing pain and Hayley, eight then, was up in the night crying in agony.

We set out early next morning in search of an ENT doctor in the main town. The lovely doctor, who was thrilled to see her mastoidectomy scar and hear the word cholesteatoma (of Greek origin I guessed?), did a very thorough examination and prescribed antibiotics. Thankfully the pills kicked in quickly and stopped the pain.

Not wanting to see the rest of her holiday ruined, the doctor said Hayley could go in the pool after a couple of days, but not put her head underwater. He also said to stop using her ear moulds, which would keep re-infecting her ears, and gave us some cotton wool and Vaseline to use instead. So all was not lost.

Right now, I’ll whizz her up to our GP to check if it’s an infection. I think it’s also probably time to ask for an appointment with the audiologist to check if Hayley needs new moulds made, in case her ears have grown.

Swim plugs – just another example of those extra little things that being deaf involves. But also one more thing that Hayley has learned over the years to manage herself on the road to independence.

Please note photo is not of Hayley.

 

 

 
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College trip to New York

Hayley’s growing up, becoming more independent than ever, and travelling halfway across the world with her friends…

Sunday early evening, at the computer

“OMG it’s soo amazing, we’re having a wicked time! Love you x”

Hayley’s messaging me from across the Atlantic. She’s eating breakfast (pancakes with maple syrup and bacon) and I’ve just cleared up after dinner (ham, egg and chips) at home.

She’s gone off on a five-day trip to New York with her college and I’m scrolling through a stream of photos she’s just posted up on Facebook – iconic cityscapes and landmarks, the Statue of Liberty, Times Square, the Empire State Building, American traffic cops mailboxes, ‘don’t walk’ lights at traffic signals, and of course endless snaps of food they’re about to eat, have just eaten or would like to eat…

Arms raised in the air

When I shelled out for the trip back in September when she started college, I thought it was tied in with her Hospitality and Catering course, was all about the gastronomic delights on offer.

But when Hayley said their itinerary included eating at Planet Hollywood and the Hard Rock Café, I was surprised. It turned out the trip was open to all at the college, whether hairdressing, engineering or floristry students.

I didn’t mind though, because to be honest it marked such a turning point in Hayley’s life.

She was massively keen to go because of course it was billed as the opportunity of a lifetime.

But the other reason she was so hell-bent on going was that her friends had put their names down and she so desperately wanted to go with them.

Regular readers might recall that Hayley has struggled socially throughout her school life from the age of eight when she was diagnosed as deaf. It wasn’t just the obvious things, the hearing aids, the ‘otherness’ of being the only child in school who was deaf.

It was a subtle mix of things to do with deafness that combined and conspired to set her apart. Having to sit in a certain place in the classroom so she could hear the teachers and see their face to lip-read, rather than with a group of friends. Time off for hospital and audiology appointments and surgery to remove the cholesteatomas that grew aggressively in her ears.

Never quite being in on what was required next in class, where to go, what to do, though she watched her classmates eagle-eyed to try to keep in the loop.

Always being one step behind in the conversation, processing slower, not getting the joke or getting it one beat too late, all the struggles of trying to hear and make sense of everything in the noisy, fast moving din of the playground, everyone talking and shouting at once and on the move so that things were lost on her.

Having to be taken out of class for extra sessions to work on phonics and her word retrieval difficulties.

Yet Hayley was always so sociable, never stopped trying, but it so often didn’t go well for her and only got worse at high school. She spent a lot of the time feeling lonely, sad and isolated.

College proved a different story, a clean slate where she made friends, proper friends, with likeminded people who shared the same interests.

And the fact that at the other end of the college year they’re still good mates and experiencing the joys of New York together is testament to that progress.

Please note image is not Hayley

Deaf awareness at Christmas

Day after Boxing Day, busy Christmas household

I knock gently on Hayley’s door and peer round to see her sitting up in bed, duvet pulled up to her chin, headphones on.

“Thanks Mum.” She smiles gratefully, taking the hot water bottle and paracetamol I give her.

She’s not ill, just suffering from a headache and taking some time out away from the madness.

If there’s one thing Hayley loves it’s Christmas. She’s very sociable, loves parties, adores her little nephew and young cousins and is addicted to chocolate – what’s not to love!

But over the years I’ve realised it’s not the easiest time for her, as deafness brings extra challenges when there’s so much going on and an onslaught of guests.

Christmas dinner

There’s the obvious increase in chaotic noise levels, with everyone chattering at once, making it hard for Hayley to follow. She often ends up with a headache from her hearing aids amplifying all the extra noise.

And many of the visitors are people we don’t see too often so they are not deaf aware, and this adds to stress and sense of exclusion for Hayley when she can’t easily join in.

One likely flashpoint is the dinner table. Mealtimes with a dozen or more people crowded round, all talking over the clatter and scraping of plates is a minefield for Hayley.

As well as the din she struggles to follow the pinball nature of the conversation ricocheting around the table, as well as not being easily able to lipread because she can’t see everyone’s face.

So she often misses bits or perhaps the main point. Someone – usually me, her dad or her brothers – will stop to explain to Hayley what she’s missed. It makes for an interrupted flow of conversation, which we’re used to, but visitors don’t always understand or show patience and consideration towards her.

Hayley often ends up feeling excluded, leaving her very frustrated and giving her self-esteem a bit of a hammering, even more so when she picks up on the exasperation of some guests.

We of course want to avoid these situations, but don’t want to make a big deal of it which would embarrass Hayley and make our visitors feel they’re being lectured, so it’s a tricky balance. We just tend to drop in deaf awareness tips casually and hope guests pick up on it and follow the example of the rest of us.

These seasonal gatherings of non-deaf aware visitors are also a prime time for over use of the ‘Oh it doesn’t matter’ response when Hayley says ‘pardon?’ It is a huge insult to someone who is deaf – the phrase is banned in our house – and likely to make her blood boil.

“If it’s important enough to bother saying to everyone else, then why aren’t I important enough to bother repeating it for me?” she quite rightly used to challenge her brothers.

They’ve grown up learning why it’s important and will repeat it to others who fall foul of the rule. Hopefully other guests catch on too.

One thing’s for sure, over the years things have got easier to deal with. We know that time out for a bit of peace and quiet is a good idea for keeping Hayley’s equilibrium.

And with Hayley and her brothers maturing, and perhaps deaf awareness messages getting through to the odd guest, the extra stresses and challenges of having a deaf child are definitely easing – shame I can’t say the same about the rest of Christmas!

Please note the image is not of Hayley.