Happy 18th birthday Hayley!

Hayley bids farewell to childhood and continues along the path to a future full of hope and ambitions…

Monday evening, at the computer

“Seems funny I won’t be reading about my life anymore…” Hayley looks sad but then her face lights up. “But hey I’ll be able to drink alcohol!”

Yes, Hayley turns 18 this month and as she says goodbye officially to childhood, we say farewell to the regular blog. We know the National Deaf Children’s Society will be there for us for a few years yet, but our biggest battles have been fought.

Number 18 Candles Cake

Looking back at the first blogs seven years ago I’m blown away by how far we’ve come. Hayley was in primary school and we were just beginning our journey to get her on the road to success and wellbeing in a hearing world.

Realising what we were up against after she was diagnosed as deaf, what her needs were, how they’d be supported (or most often not). Learning how we’d have to battle for every scrap of help, but how the National Deaf Children’s Society would be by our side, including often literally with our children and families’ support officer in school meetings, to help get what Hayley needed.

Learning about everything, from how to re-tube Hayley’s hearing aids – after hours of me trying to push (!) the new tube in – to how to apply for special exam arrangements when she reached GCSE year. Discovering she could be entitled to a special educational needs (SEN) statement and getting expert help from the National Deaf Children’s Society to appeal.

I remember how exhausting and frustrating primary school was for a child spending every minute intensely straining to hear what’s being said, not just by teachers but in the noisy chaos of the playground. The tantrums at home after a long day coping, headaches from a noisy world amplified by hearing aids – a world that won’t take the time to make sure Hayley’s heard, or to wait for her to get her words out when she stumbles, her processing skills and other deaf-related issues, like word retrieval difficulties, halting her, tripping her up.

The world moving on without her – her being just that step behind and being left out because of it. The loneliness, tears and isolation, the constant struggle socially.

I remember the high hopes of an excited 11-year-old Hayley starting secondary school thinking everything would be amazing, but finding it harder than ever – the challenges of navigating around a huge site, never quite knowing where she should be (she once sat through a French lesson thinking it was German!).

Being ostracised and bullied, sobbing every night, begging to move schools. More support from the National Deaf Children’s Society encouraging the special educational needs coordinator (SENCO) to help find strategies to improve things.

Being diagnosed with autism, then later undiagnosed, no resolution to her difficulties, perhaps just a mix of deaf-related issues.

Being permanently at war with useless SENCOs, battling for more support in the classroom. Getting information from the National Deaf Children’s Society explaining about rights to extra exam time, presenting it to the SENCO who’d refused Hayley extra time.

Remembering the time her consultant finally said, after countless operations including three mastoidectomies to rid her of cholesteatomas in both ears, that she’d now only need an annual check-up – yay! And Hayley asking would she always have to wear hearing aids and him saying “Yes Hayley, but they’re part of you, part of who you are”. I could kiss that man.

Then there were National Deaf Children’s Society residential events we’d collect Hayley from and find her apparently inches taller, self-esteem boosted, full of the fantastic time they’d had trying new things, making friends.

Watching Hayley’s love of cooking develop, winning young chef contests, gaining confidence and a direction.

Last September, fresh beginnings at catering college. Not wanting to put her hair up because her new classmates would see her hearing aids, then going for it anyway.

The National Deaf Children’s Society helped us through it all, helped Hayley find herself, believe in herself. She recently shared a Facebook post which said: ‘If I had the choice I would choose to be deaf’. She’s come such a long way from the frustrated meltdowns – “hate my hearing aids, hate my stupid ears”.

Hayley talks of volunteering for the National Deaf Children’s Society, to help support other deaf children to blossom into strong, independent young people who can hold their heads high and embrace life, their future, just like any other young person. Just like Hayley has.

I’ll be honest, I’m feeling more than a little emotional as I write this. I’ll probably hit the alcohol with as much enthusiasm as Hayley will!

But right now I want to say goodbye to the regular blog (though we might post an occasional update) and thank you to the National Deaf Children’s Society for helping to fight Hayley’s battles so far, and for all they do to help deaf children and young people. The world, and their world, is a better place for it.

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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.

 

 

 

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!

Hayley’s not looking after her hearing aids

Now Hayley is growing up, Tiger mum has to persuade her to take on responsibility for aspects of her own life and health – but it’s not always easy…

Saturday night, in the garage…

Hayley is hiding in her room. I’m fuming.

I’ve just spent the best part of an hour trying to sort out her hearing aid.

Teenager girl taking off hearing aid

It doesn’t say anything about this in the hearing aid guides, nor the NDCS video about hearing aid maintenance and re-tubing.

The problem is this tube hasn’t been touched for ages. Hayley just will not remember to re-tube or even to clean them. I nag and nag, but she seems to think it’s acceptable to just keep wearing them as long as they keep working. The most she’ll do is put a battery in when it runs out.

You’re supposed to clean them daily, I tell her repeatedly. ‘Even every couple of days would be okay,’ I bargain.

But I swear I can’t remember the last time she did it. In fact I don’t think she’s cleaned them since her last audiology appointment three months back.

Honestly!

When I put that to her earlier she looked very sheepish, so guilty she didn’t even bother snapping at me in the usual full-on, hormonal teen fashion that is the default for so many exchanges these days.

So now here we are. I’d said wouldn’t it be nice if she went to her catering job tonight with nice clean hearing aids.

She apologised for being such a slob and we’ve agreed that they’re so old and brittle, she should re-tube them.

Except that’s turned out to be easier said than done. She couldn’t remove the tube from this one, so she gave it to me. I’ve tried. I’ve pulled and twisted, even warmed it up by pouring hot water over the end of the tube, but all to no avail.

Now I’m in the garage in the dark, in the freezing cold, hunting out a pair of pliers

I return to the kitchen with a selection of tools. I pull and pull with the pliers but the tube – which has become hardened and unpliable, so won’t ease off of the hook – just flattens and extends. I’m worried I’ll snap off the hook.

I persevere for the next 20 minutes, alternating with pouring boiling water onto the tube, scalding my fingers in the process.

Hayley ventures downstairs, chances a peek around the door.

‘Any luck Mum?’

I rant on again about how ridiculous this is, and she flees back up to the sanctuary of her room.

Right. I need a sharp knife. The only way I can see to do it is to cut a little slit into the top of the tube, but without slicing through to the hook beneath.

Another five frustrating minutes later and success – I pull the tube clear.

Now for re-tubing. I call Hayley down so she can be involved, and she gets on and snips the new tube into a sharp point to thread through the mould.

It’s done. She whisks off to work just in time, complete with hygienic hearing aids.

Now I’ve written it on the calendar in bold red, every three days: HHA – Hayley Hearing Aids. Clean them. She’s promised to do it.

I can’t believe other people do it every day – do they?

Why not comment below and let Tiger Mum know how often you or your child cleans their hearing aids?

A great start at college

College life turns out to be keeping Hayley pretty busy but also very happy

Saturday morning, in the garden…

I’m standing by the washing line pegging out flappy rows of little white chef’s jackets and aprons, making the most of this glorious autumn sunshine.

Hayley is four weeks in at her catering and hospitality course at college, and after the initial packed itinerary of welcome meetings, admin, food hygiene exams and general sorting out, they got down to work pretty quickly.

This has been the busiest week yet. Hayley and her fellow students have been cooking a range of delights for the restaurant at college, including pea soup, the vivid hues of which I’ve just about managed to get out of the chef’s whites (who was it thought of making chef’s uniforms white…!)

Teacher Helping Students Training To Work In Catering

And Hayley is in bed, having a well-earned lie in.

It’s been full on, very different from the school days that saw her home by 3.20pm each day.

She’s now got long days and an hour’s train commute, so most often she’s out the door by 7.25am, and likely not back in until 6.30pm. Then there are the early starts two days a week when they have to prepare food for breakfast in the restaurant, so she’s gone from here by 6.45am – before I’m even out of bed!

But the amazing thing is that she’s doing it. And she’s managing it all by herself – by that, I mean classes and college life too. And she’s happy. Bingo!

After all the struggles through school years – with her deafness, specific learning difficulties, slow processing skills, friendship and bullying issues, rubbish support from school – she seems to be not just coping but flying.

And it’s just as well because I’ve barely seen her to ask, let alone had a chance to offer help of any sort.

Whereas at school there’s still that umbilical tie to your offspring, communicating with teachers, flurries of emails about progress/homework/uniform, and you’re kept in the loop as the parent ultimately responsible – suddenly it’s cast off time. It’s all down to them whether they sink or swim.

We’ve managed only a few snatched little conversations or texts from the train, because she’s been very busy with her social life too, going out with new friends straight after college (yes!!).

But she can hear okay with just her hearing aids, in the small classrooms and apparently even in the huge kitchens; her lecturers make sure she knows what she should be doing. She seems to be able to keep up with note taking and understand everything.

She’s exhausted but she’s loving her new life at college, making great headway, no intention of sinking.

It was a bit alien, and worrying, not being able to grill her closely about how she’s coping, but as it turns out no there’s no need for me to be concerned or even involved. It feels strange but liberating to be free from micro managing Hayley’s life and she certainly seems happy with the situation.

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.