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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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

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!

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!

Activities for deaf teens with additional needs

14-year-old moderately deaf, fiercely independent Hayley’s off on her summer adventures.

The suitcases are out, the sleeping bags and camping mats are scattered around the floor. Hayley’s off on her summer travels. Not the rest of us, note, just Action Girl. Independence? If there’s one word that sums up Hayley, that’s the one.

It’s mostly down to the gutsy, determined and enthusiastic person that she is, has always been since she was a baby, a 4lb 3oz scrap of willpower that battled her way out of special care.

Before she could walk she used to be known as Tigger, with her strawberry blonde Mohican hair striped with ginger – the style (not the colour), the legacy of doctors shaving each side of her tiny head trying to find veins big enough to get an IV long-line into her. Careering along the street in her buggy, she’d bounce up and down excitedly with a big smile on her face for anyone and everyone.

From the word go that girl had an appetite for life.

“I’ve always encouraged all my kids to jump in and go for it”

I’ve always encouraged all my kids to jump in and go for it when interesting opportunities come their way, believing you should try everything you can. And this has become more pertinent to Hayley as time’s gone on.

When Hayley was diagnosed with hearing loss and later with autistic spectrum disorder (ASD), it gradually became evident in primary school that this double challenge caused her to struggle in various ways. Academically life is an uphill trudge for her. Apart from her hearing loss she has processing difficulties and a poor working memory, and all her set GCSE targets are C or below.

‘Incidental learning’ is another casualty – while her siblings all will mop up information around them like a sponge even when it’s not directed at them, things tend to bypass Hayley. And where they will learn to apply experience from one situation onto a different context, Hayley is far less able to do this.

“I’ve often worried how Hayley will fare as she grows up”

She also struggles socially with her own peer group, despite being incredibly sociable, a real people person.

So while both her brothers and her older sister – ranging in age from 12 to 35 – are very outgoing and lead busy social lives, things haven’t been so easy for Hayley. I know the others will find their way in life, but I’ve often worried how Hayley will fare as she grows up and what the future holds for her as an adult.

“Her social life has been near non-existent for much of the time”

Without a solid friendship group, her social life has been near non-existent for much of the time and her default is to bury her head in anything with a screen for hours on end – the laptop, the TV, iPlayer.

So one of my aims has been to try to push her into experiencing the world in as many ways as possible, to help her learn how to be with people and to cope with different situations. And Hayley has made that easy because she’s really game.

Her regular weekly activities include Air Cadets, Guides, tennis and trampolining. In the last year alone she’s done rifle shooting, abseiling, mountain walking, rock climbing, sailing, kayaking, a week’s sponsored march across the D-Day beaches of Normandy, a night-time hike with Guides plus other exciting arts and sporting activities on NDCS holidays and events.

Yes, there’s often a cost involved, but many of these things are more affordable when they’re subsidised through youth organisations. Some things, like the NDCS events, are even free.

Hayley’s also got herself a job two evenings a week working on a local youth scheme – which means she’s started horse riding lessons now that can contribute towards the cost!

Some of the events can be a chunk out of the housekeeping, but as far as I’m concerned, Hayley gets no other support, no benefits and is not statemented, so it doesn’t add up to a lot in terms of providing a useful learning therapy for life, as well as being fun and helping her to make friends.

I really think it’s all done her a powerful amount of good. She’s thrived on it, matured, and emerged stronger, more confident, more able socially, as well as becoming more independent than ever. She knows she can ask for herself if she can’t hear or there’s something she needs.

I’d say to any parent of a child with extra challenges, if you can, go for it.

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.