Hayley’s broken hearing aid

A broken hearing aid throws life into chaos for Hayley… thank goodness for a helpful audiology department

Wednesday evening, in the car

Hayley’s just got into the car after finishing a day’s work experience placement at a hotel, as part of her college course. Before I can ask her how it went, she’s launched into a full-on rant, on the verge of tears.

“Oh my god, you’ve got to do something! My hearing aid’s broken, I can’t hear anything, I’m not going into college in the morning if I can’t hear! I don’t care if I get into trouble, I’m not going!”

Teenager girl taking off hearing aid

I try to calm her down, but there’s not much I can say because we can’t do anything until tomorrow when the audiology department will be open and hopefully sort us out.

She’s really upset because she’s struggled to hear for six hours, including instructions from the chefs and front of house manager, and she’s embarrassed. Normally she manages so well that the issue never comes up anywhere, even at work where she’s a part time kitchen assistant in a pub restaurant; no-one’s even asked about her hearing aids.

It’s funny how you get to take things for granted, especially when you’re seeing it from the outside.

Hayley is moderately deaf in both ears, wears two hearing aids, and without them – and a bit of lip-reading – she struggles desperately. In her waking moments she’s never without them, you almost get lulled into forgetting she’s deaf. I still get surprised when I go to wake her in the morning, and talk to her and she can’t hear anything I’m saying, until she reaches over for her hearing aids and pops them in.

We’ve grown to take it for granted over the 10 years since she’s worn them, whereas at first we were more aware of whether she could hear, of how exhausting a school day was for her straining to hear in the chaos of the classroom, corridors and playground.

Hayley’s become so independent with it all, now we don’t give it so much thought – until a blip like this.

She’s done well really, she’s had hearing aids since she was eight and she’s only broken one once before, and lost two (one left on a train after she took it out to put headphones on, the other got eaten – well thoroughly chewed anyway – by the dog).

I know what the problem is this time. It’s the hook that’s broken – the little bit attached to the electronic part of the hearing aid which the tube pushes onto.

What’s happened is that after much nagging, she finally re-tubed her hearing aid this morning and because she’d left it so long the tube got brittle, was hard to pull off, and the pressure cracked the delicate hook.

Next morning I call the audiology department and they say bring it in. It’s 45 minutes’ drive and sure enough the lovely staff sort it, and within two hours I hotfoot it back to deliver it to Hayley.

“Yes I’ll re-tube it sooner next time,” she promises as she runs off for her train to college.

Even Hayley takes her hearing aids for granted, but I think this time maybe she will do it!

Making sure Hayley’s needs are met at college

It’s a whole new phase of life for Hayley as she prepares for her first term at college. She and Tiger Mum are determined to make sure her needs will be met from the outset…

Tuesday morning, outside Hayley’s college

Hayley and I are walking away from the vast buildings of the college that will be her new base for the next two years. We’ve been to a meeting with Dan from the additional needs team. The college seemed keen on promoting the support they can offer, so that gives me big hope. But then, bearing in mind how the special educational needs co-ordinator (SENCO) at Hayley’s secondary school was full of talk when Hayley started – of the support they could offer, how Hayley’s needs would be communicated to her subject teachers – and how little of it came to fruition, I’m wary. At college there’s no involvement from the Teacher of the Deaf who assessed Hayley termly at school, so I found myself feeling quite business-like about asking exactly what support they can provide.

Students in a school hallway

Dan asked what support we wanted – exam access arrangements please (25% extra time and a separate room), we said, like she had at school. I explained that her deafness and slow processing skills entitled her to it. Dan said they’d give her a 45-minute writing assessment, then decide what support she needed. He said they’d put her on a six-week support trial initially, with copies of notes taken by the support and learning assistant (SLA) each lecture, plus help with assignments, then decide how much of it was needed ongoing.

So far, so good.

Battle-weary and wiser, I asked whether staff had any deaf awareness knowledge or training. I said I could send them some NDCS resources to help. He confidently responded that there were two BSL signers, and assistive technology. That’s great, but Hayley doesn’t use sign or radio aids. I tested the water a bit further, mentioning classroom acoustics. Dan said Hayley could sit at the front by the lecturer. I said there was more to it than that – Hayley needed to be able to see the lecturer’s face clearly so she could lipread.

I said deaf awareness was important; lecturers needed to realise that answers given by Hayley’s classmates in response to questions form part of the information everyone takes in – but would be lost on Hayley if they were sat behind her and she couldn’t see/hear them. A simple remedy is the lecturer always relaying the answers back to the class, so that Hayley too has the information.

Dan was clearly unaware of the issues, floundered a bit and said he’d never worked with deaf students before, so I again offered to send some NDCS resources, and he said okay.

As we walked to get our train afterwards, I expected a telling-off from Hayley about being difficult and embarrassing her, but was surprised when none came. “They seem much more helpful than school were,” she said, sounding hopeful. “Especially if they get the information.”

So that’s both of us that have moved on then. Cause a fuss, call them out. Don’t be fobbed off or assume they know best and will put everything into place. We made that mistake before.

Hayley’s earning money!

Hayley’s got a new job, a budding fledgling bank account and friends – the girl’s going places

Saturday morning, in the car

‘OMG! I can’t believe it, Mum look!’

I resist the temptation to squint at Hayley’s mobile screen as I’m driving.

‘How about just tell me so I can keep my eyes on the road – is it good or bad?’

I can’t tell from the exact nature of the shriek but veering towards good rather than tragic I’d say.

‘I’ve been paid over £100!’

Extreme close-up of hand holding a modern smartphone with a generic mobile banking app running. This is a version with Pound symbol. Note to inspector, concerning copyright etc: The whole screen (every single graphic element, including battery indicator) is designed by myself.

I’m driving Hayley to work – her new weekend job at a big children’s amusement farm near us. It really is the Holy Grail of the teenage job market in this area – and she’s just seen her first month’s wages in her online bank account.

Hayley can still barely believe she’s got the job; the competition is huge. It took a lengthy application form, complete with points-based psychological personality profiling scenarios to respond to, then a four-hour team-based assessment evening with 40 other applicants – and hallelujah she got it!

She didn’t mention her deafness, although of course her hearing aids are visible. We’d decided not to put it on the application form either as she needed no support to communicate – with her hearing aids plus a little lip reading she gets on fine.

I do wonder if it would’ve made a difference had she flagged it up. We’ve debated in previous job applications whether or not to include it, deciding on the ‘let’s not give them any reason to turn her down, illegal discrimination or not, and bring it up later’ approach.

I don’t believe people are deliberately discriminatory but I suspect often, through lack of knowledge, some might imagine deafness will present too many difficulties so it’s easier to just sift out the application, perhaps for other reasons.

I know not everyone would agree, but I think deaf and proud guerrilla-style is the effective way forward for Hayley in these instances. Get in the door, then there’s the chance to prove yourself, that your abilities are as good as anyone else’s.

So Hayley’s doing weekend shifts, some on the activities side but mostly in their cafes. This is great because she’s aiming for a career as a chef and her hospitality and catering college course lined up for September requires students to have a part-time catering job to support studies.

Hayley couldn’t be more thrilled. That girl loves to work, the money’s just an added bonus for her.

She loves it – the uniform, the team meetings, doesn’t even mind getting up at 7am on a Sunday morning (no me neither, honest…). She’s made friends too, which is fantastic; school’s been a struggle socially all the way along.

Already it’s done lots for her self-esteem. At 5.30pm when they all troop out, the farm army of weekend workers, it’s so good to see her happy little face, enjoying being part of something worth having.

I know she should be spending those hours revising, I’ve clocked the looks from other parents of Year 11s, but as far as I’m concerned Hayley needs mates, self-esteem and a solid work record more than she needs top grades.

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.

Hayley’s come a long way

Proud Tiger Mother reflects on how far moderately deaf 14-year-old Hayley, who has autistic spectrum disorder (ASD), has come and her bright future ahead.

Firing up the car engine, I sit for a moment to watch the little figure in a black cocktail dress quickly cross the car park to the hall entrance, slightly wobbly on high heels.

A man in a dinner jacket greets her at the door. Hayley turns briefly to me – a swift wave, a nervous smile, but nevertheless a look that hisses ‘Mum, go now, I’m fine on my own’.

That’s my little girl. Except I’m just realising that she’s somehow become something of a grown up. As I drive away, I reflect on just what a long way she’s come, and almost every step of it a battle.

Ever since Hayley was born prematurely, a 4lbs 3ozs scrap, she’s been fighting.

In special care she battled with infections and other problems to be well enough to come home.

“Before her hearing loss was discovered, she fought to keep up”

At school, before her hearing loss was discovered, she fought to keep up. Learning instinctively to lipread, she’d watch her peers closely to see what she should be doing next – eyes like a hawk to compensate for her deafness.

Diagnosed with autistic spectrum disorder (ASD), she struggled to understand the complexities of the social swim. But she fought fiercely to stay afloat, to avoid sinking into the lonely depths of isolation.

She fought back to full recovery after every operation on her ears, from repeated grommets to three mastoidectomies, including procedures to rebuild her middle ear and ear drums.

From the off, Hayley has been battling. And NDCS has helped her, arming us with information to help her, providing her with weekends away and activity holidays where she’s flourished, understanding she’s not alone with deafness and helping her grow in confidence.

And here she is tonight, attending the annual dinner of her Air Training Corps (ATC) squadron where she’s been a cadet for 18 months.

The formal occasion is a far cry from the usual night exercises in which, head to toe in camouflage, they crawl about in the mud in the dark; or evenings spent in a hut learning about aeroplanes and how to clean a rifle; or dressed in formal ‘blues’ uniform for parade.

Hayley recently spent a week in snow-tipped north Wales, in the freezing temperatures of the coldest spring that we’ve just endured, mountain climbing, white water rafting, abseiling and more.

She impressed others with her determination to keep going, hour after hour of fairly relentless activities, climbing as far as the snow line, zip-wiring from the 70ft-high ledge of a slate quarry into the bone-chillingly cold water of a lake. That’s my girl (rather her than me!).

“What she lacks in height she makes up for in toughness”

When I see a photo of her marching with the other cadets, she’s half their size, looks more like a mascot, but what she lacks in height she makes up for in toughness and sheer do-or-die determination. Despite her difficulties, she’s game, up for everything.

Tonight will be a different kind of challenge. She’ll have to look and act like a lady, talk and dine like a lady – she may struggle more with this than the gruelling outdoor survival challenges…!

When Hayley joined the ATC I wondered in this blog how deaf-friendly it would be, voiced my concerns over how she’d cope away from family, school or NDCS activities, where her deafness and her autism are, to different degrees, understood and supported.

It was the first step into a more grown up world, a taste of how life would be for Hayley without a supportive presence to back her up.

Back then, a blog reader posted in response to say how brilliant cadets had been for her two children, one with severe glue ear, the other with moderate learning difficulties. It’d been supportive and accepting and helped both her children to be confident and sociable. And there was a comment posted by an ATC training officer, saying how it fostered independence.

I have to say I wholeheartedly agree. They’ve been great, not made a fuss or an exception for her but just quietly looked out for her, made sure her needs are catered for, been inclusive. If only every organisation was the same.

Hayley’s gained so much – skills, independence, confidence – and has gone from strength to strength.

And now as she starts to cross that threshold into adulthood, I’ve just had a glimpse of the future that once seemed possibly quite bleak and uncertain, filled me with fear for her – now it looks full of hope.