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.

Advertisements

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?

Hayley’s not hiding her hearing aids

Sunday afternoon, at home on my mobile

Ping! Hayley’s posted more photos on Facebook from New Year’s Eve.

She went to stay with a mate for the celebrations – a sign of the times, Hayley being 17 now and it being far too boring at home with the folks.

The photos show Hayley and friends, a happy bunch, all glamour and smiles for their group shots.
teenage girl hearing aid
Scrolling through, I can tell that she was feeling confident as she got ready to party with her friends and others, friends of friends she’d never met before.

I know because her hair is in an ‘up’ do.

It’s often possible to gauge Hayley’s confidence levels by her hairstyle, up or down, tucked behind her ears or brushed over them.

I remember back to last year when she went to registration day on her Hospitality and Catering college course – out into the big world of strangers, beyond the smallish community where we live, where she’s been around the same familiar peer group since nursery.

As we got ready to drive to college that September morning, I noticed Hayley wasn’t wearing her left hearing aid (her slightly better ear). She had her hair tucked behind that ear and swept across to the other side, covering her hearing aid in her right ear (which is more severely deaf).

I asked her where the missing hearing aid was. Hayley shook her head, smoothed her hair further over her existing one.

“I don’t want people to know I’m deaf or wear hearing aids.”

This was a first. She’d worn them since the age of seven and never seemed to mind before; they were part of her.

“But why, love?”

“Because people treat you differently.”

Really?

“Yes mum – if they know you have something wrong with you, whatever it is, like special needs or even if you’re diabetic, they see you differently and treat you differently.”

But…

“Yes I know they’re going to see my hearing aids eventually because I have to tie my hair back and wear a chef’s skull cap.” Looking defiant now. “But I want to get to know them and make friends first, before they judge me.”

Wow. She’d really thought this through. My heart gave a little ouch, thinking of her preparing for the big day meeting all the other new students. Most teenagers would be feeling self-conscious pangs of doubt, wondering how they measure up, how they’ll fit in. She had an extra insecurity to wrangle with.

And I can’t fault her thinking. She’s right, people do make judgements. Who am I to instruct her to bold it out, stick with what is righteous, when this is the real world and not a politically correct one.

Anyway, within a week Hayley was comfortable enough to go back to two hearing aids, hair scraped back for kitchen duty. She’s made good friends who accept her and her confidence has grown.

And that’s what shines out in the party photos…

Please note photo is not of Hayley.

Hayley misplaces one of her hearing aids

Hayley misplaces one of her hearing aids, and is mortified when mum tells her their lively, lovable pup’s found it and chewed it up!

Hayley is looking at me impatiently. “Well?” she demands.

She spots the dog yawning luxuriously, waking from an afternoon nap, and drops her school bag to rush over and cuddle her. Hayley adores the dog who adores her back, and for a moment I put off finishing what I’d started telling her.

pink-hearing-aid

Hayley mislaid one of her hearing aids yesterday and we agreed that while she checked her classrooms and school locker, I would hunt round the house for it. She’s very good at looking after them and she gets very upset when she thinks she’s lost one. If ever they are misplaced, it’s not for long; they usually turn up in a pocket or down the side of her bed.

At lunchtime I texted Hayley to tell her the missing hearing aid had turned up at home, so she could stop looking.

Now she wants it back.

“Well,” I say, cautiously. “The good news it’s been found… The bad news is, it was the dog that found it…”

Her mouth falls open as the penny drops. “Oh no, she hasn’t…?”

I nod slowly. The dog has of course eaten it. Well, given it a good chew before I could get it off her anyway.

She’s a large, curious and hungry five month old puppy who eats everything, including stones, house bricks and the back door. A hearing aid would be a mere morsel!

Hayley wails and a look of worry pins the dog’s ears back to their ‘guilty’ position.

But Hayley can’t stay mad at the dog for long, she’s her best friend.

Since we got her from a rescue shelter last summer, this pup’s proved to be worth her weight in gold when it comes to being a loyal and loving companion.

“With her mild ASD, Hayley finds it difficult to make close friends”

With her mild ASD, Hayley finds it difficult to make close friends. She spends a lot of time, when she’s not at one of her many sporting/Guiding/Air Cadets activities, at home with boring old us for company.

It’s been lovely to see her bond with our new family member, care for her, help to train her, the only one initially who could get her out in the rain for a toilet trip.

Right now Hayley’s worried that audiology will charge us for a new aid, but I tell her how nice they were on the phone when I told them the dog had eaten it (mortified shrieks from Hayley, ‘Mum you didn’t actually tell them that!’) and that they would arrange for a new one right away, with no charge incurred. Everyone in that department is really lovely; I know how lucky we are because not everyone has such a good experience with audiology services in different regions.

So all’s well. Except that Hayley’s younger brother Harry, who’s heard the news, is thrusting his maths exercise book under the dog’s nose and making chomping noises.

“If I could just get her to like it as much as she likes hearing aids,” he says. “Then I wouldn’t have to do my homework…”

Cleaning hearing aids

Tiger Mother wonders why fiercely independent moderately deaf 14-year-old Hayley cleans her own hearing aids so reluctantly.

Hayley and I have just had an argument about her hearing aids – trying to establish whether she’s cleaned them or, as I suspect, not. A year ago it occurred to me it was time she took responsibility for them. After all, she’s 14 – she should know how to look after them.

She’s fiercely independent, has long fought to do things herself. She irons her clothes, cooks three course meals to competition standards, manages train journeys alone – why would I still clean her hearing aids?

She grudgingly agreed, but has proved sloppy at doing it daily, as recommended.

“It’s like cleaning your teeth,” I tell her regularly. “Make it part of your daily routine. And no, I’m not suggesting you use toothpaste on them!”

I don’t understand why she won’t take them more seriously. They’re a lifeline for her – at least her right one is, she had a mild loss in her left ear and feels that one has only borderline benefit, so she leaves it out sometimes.

One day she’ll have to do it herself. Why not start now?

It’s like most things with teenagers, if it suits them they’ll do it (“Mum I’m not a kid!”), otherwise they’re happy for you to do it (“You’re the mum, you should do that for your kid!”).

Hormones being what they are at her age, raging and ricocheting around the house, we row about everything from getting up for school to how often is acceptable to borrow my mascara ( taking it away with her on a Guides holiday without asking is at the unacceptable end).,

So it’s one more thing to erm, discuss, loudly and with feeling. I try to gently remind her about cleaning them, which can result in either a disinterested tut and rolling of the eyes, or a full scale, bellowing tantrum complete with stamping off and door slamming finale.

It did result in a run in with her Teacher of the Deaf (ToD). I received a report stating that Hayley’s aids had wax in the tubes and that Hayley said she hadn’t worn her left aid since we’d last visited the audiologist (two months earlier), because it wasn’t working properly.

The ToD stressed the importance of daily cleaning, recommending that “a named member of staff liaise with Hayley about the cleanliness of her ear moulds and monitor the usage of her left hearing aid”.

The conclusion drawn was that Hayley hadn’t worn the aid for two months because it wasn’t working, as she hadn’t cleaned it. But neither of these things were true!

At the audiology appointment, Hayley mentioned it wasn’t working properly so the audiologist re-tubed it and tested it. Hayley still wasn’t happy and the audiologist suggested it was Hayley’s ear or perception that’d changed.

Hayley continued wearing it until week before the ToD visit. Yes the aids were waxy, but Hayley always has wax build-up in her ears; you could put the aids in clean and they’d instantly come out waxy.

“It made me seem like an unfit mother who needed checking up on”

So now it’s on some official file that Hayley didn’t wear her aid for two months because we hadn’t bothered to clean it.  It made me seem like an unfit mother who needed checking up on. In fact I’m doing all I can for her – it’s usually me chasing everyone else to meet her needs!

Why didn’t they ask me? I could’ve explained things more accurately than a 14-year-old with ASD, little grip on timescale, a poor memory and not the best communication skills.

Anyway, I know the ToD was only doing her job and it’s probably done us a favour – Hayley was embarrassed into cleaning them more often, hopefully cutting down our rowing time!