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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Hayley’s ASD has been ‘undiagnosed’!

Tiger Mother’s had some great news – Hayley’s ASD has been ‘undiagnosed’! But Hayley’s confused and wondering how she will now explain to others about why she finds things difficult.

Well here’s a turn up for the books.

I’ve just come home from a hospital appointment to review Hayley’s ASD. She wasn’t with me – the letter said to come on my own.

I did a lengthy multiple choice interview with the paediatrician, covering detailed aspects of Hayley’s behaviour since a baby.

Then I was called back for the result – Hayley doesn’t have ASD. Even though for the last six years, we’ve been told she had.

Yes, he agreed, even given her deafness, she struggles in various areas of understanding, inference, social situations and learning, but it’s not ASD.

Autism

I’m confused but incredibly pleased and as Hayley’s arrived home from school I’ve told her that she’s been ‘undiagnosed’.

‘So I haven’t got ASD?’ says Hayley. ‘But you said I’d always have it?’

I nod and shrug.

“How will I to explain to everyone about why I find things difficult?”

She looks bereft – quite panicky. ‘But Mum, how will I to explain to everyone about why I find things difficult?’

Good question.

But it’s great news, I tell her. It means the areas where she struggles – socially, making inferences, taking in anything other than simple short chunks of information – she will likely progress as she matures.

“We assumed her ’otherness’ was part of her deafness”

In the first years of school, we assumed her ’otherness’ was part of her deafness, always one step behind, never quite in the flow, not quite gelling with her peers – missing lots of information whether spelt out or the subtle nuances and interactions at lightning speed between people.

She was almost always excluded by her peers; no one came round to tea. While her brothers’ party invites stacked up, there were rarely any for her, other than one or two close family friends’ children.

Hayley found it hard to grasp information, no more than one or two simple instructions could be retained at a time. She didn’t get jokes, couldn’t work out idioms.

She had expressive language problems, and other children didn’t have the patience to listen while she tried to get her thoughts out.

A speech and language therapist friend diagnosed Semantic Pragmatic Disorder – associated with ASD – and then the school’s Senco suggested a paediatrician assess her.

This involved me being questioned me for 20 minutes, Hayley seen for two minutes, and there it was – a diagnosis of ASD.

I was sad, mourned the person she wouldn’t become that I’d thought she would, worried about her future happiness.

But the main thing was to get her the right support – not that a diagnosis helped, with no SEN statement. And so ensued the battle we’ve waged ever since.

We’ve had fantastic support from NDCS, but there was no provision in school for ASD.

“It was hard to figure out which issues were due to deafness and which to ASD”

It was hard to figure out which issues were due to deafness and which to ASD. My own answer was to throw Hayley at everything in life I could, to gain as much experience as possible to help fill out her missing ‘insight’. Guides, judo, tennis, our local NDCS group and later Air Cadets.

Gradually we saw a change in her. Though still one or two steps behind her peers, as she matured she was ‘getting’ stuff more – life, people, social situations, jokes, irony.

She’d always had empathy, shared nicely, been considerate and thoughtful – but weren’t these all the things ASD isn’t?

“I began to question the diagnosis”

I began to question the diagnosis. At an appointment with the chief paediatrician, I couldn’t help notice her quizzical look as Hayley smiled, made eye contact, chatted, laughed.

The woman shot me a look: ‘It’s almost impossible to see any traits…?’

I nodded emphatically, she offered to have Hayley re-assessed and here we are here today.

So Hayley has lost her instant explanation shield when people look at her askance, pick up on her struggles.

But on the plus side, I think she’ll keep improving with experience, especially as her confidence grows and she helps those around her to be deaf aware and more understanding of the issues involved.

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…”

My deaf teen’s brilliant work experience

Tiger Mother’s 15-year old moderately deaf daughter Hayley, who has autistic spectrum disorder (ASD), is getting more independent by the day – and now she’s got spending power!

Tra-la-la-la, ting-ting-ting – the tills of Christmas are ringing out merrily as I shove the groceries down the conveyor belt to my chief shopping assistant for her to pack.“No Mum, keep the chilled stuff together and leave the eggs till last!”

I do as I’m told. If there’s one thing Hayley loves, and excels at, it’s groceries shopping and bag packing. And today, as all around us the frenzy of seasonal panic buying is starting to fizz, Hayley can barely contain her own excitement.

SoundingOffTest

It’s not just the whole Christmas thing, which of course she loves. It’s her new secret weapon – spending power! When it’s time to pay up, Hayley whips out her supermarket gift voucher and hands it to the cashier. She’s earned it working on a youth work experience scheme where they pay wages in vouchers. And the deal she and I have struck is that each month when she gets her voucher, I pay her the cash equivalent.

It’s a brilliant local scheme. Hayley works two evenings a week at the village community centre where she helps on reception, prepares meeting rooms, does a bit of filing and loads the dishwasher. She loves it and better still, she’s evidently really good at it.

I recently took a phone call from Hayley’s boss, the centre manager. She tells me he’s very kind, asks her about her hearing aids and makes sure she hears and understands all the instructions.

“Is that Hayley’s mum?” he asked, and for the next five minutes he waxed lyrical about Hayley and how hard working and enthusiastic she is. He said he wished all his staff could be like her.

The rich and glowing praise was joy to my ears. I felt so proud of Hayley. And so glad for her. That girl puts her heart and soul into everything she does. It’s just rare that she gets it so right or gets the recognition. Her deafness and her ASD can prove a challenge, but she doesn’t let much stand in her way.

“Work is what Hayley’s been waiting for ever since she was little”

Work is what Hayley’s been waiting for ever since she was little. She’s never had much time or use for toys or games – she’s just wanted to copy the adults around her and do jobs.

When Hayley was six or seven and would help me with housework, she actually cried once when I told her that I’d washed the floor and not saved the job for her. I had to promise her she could clean the cupboards out instead by way of compensation. I swear this is true! I would set her chores like other mothers set up games and puzzles.

“It will stand her in good stead when she leaves school and starts applying for college and jobs”

Well now Hayley’s in her element. And hopefully it will stand her in good stead when she leaves school and starts applying for college and jobs. Anything that can help give her an advantage in a hearing world can only be a good thing.

In the meantime, she’s a girl on a mission – there are presents to be bought, and she’s loaded!

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.

Deaf teens and friendships

Tiger Mother hopes 14-year-old moderately deaf Hayley has found a new friendship group, as her ‘so-called friends’ ostracise her again.

The boot polish brush goes flying through the air, describing a perfect arc before clattering to the tiled floor and skittering across to come to rest at my feet. A boot follows.

I catch sight of Hayley’s face, like thunder. She opens her mouth to remonstrate with me – it’s like looking at a cartoon of someone roaring where all you can see is the gaping cavern of their mouth with a woggly thing woggling at the back.

After screaming at me for what feels like a full lifetime, without pausing for breath, Hayley’s fury crumples into tear sodden sobs and she runs off to fling herself on the sofa.

Oh dear. All I did was point out that the kitchen table isn’t the place to polish her big air cadets marching boots. Clearly something else is fuelling this disproportionate explosion.

After calming her down, we establish what it is. It’s the so called friends. Except now they’ve passed into the realm of former friends.

“With her deafness and mild ASD, relationships aren’t easy for Hayley”

With her deafness and mild ASD, relationships aren’t easy for Hayley. Like everyone she has her faults, but she’s a very sociable girl – kind, sharing and eager to please – and tries hard to fit in with people.

During her three years at secondary school, she’s remained with the friendship group she’s known since infants, but it’s been an increasingly hurtful struggle.

As they’ve become older, grown more sophisticated in their communication and social rules, with all the subtle nuances, they’ve become more demanding and discerning. And other girls have joined the group, battling for dominance, bringing about a shift in the dynamics.

The result has been an ongoing nightmare. Three years riven with stress, grievances and upsets – Hayley came home sobbing almost every day of year 7, begging me to find her another school – and, at times, out and out bullying.

Still, they were the only group she’s known and she’s stuck it out – better than not having friends, she’s reasoned.

But it’s been like watching someone stuck in a bad marriage, cruelly destructive, shrinking her already shaky self-esteem, the way they constantly undermine her, making her feel miserable and left out.

Even when the going’s good they just about tolerate her. ‘I’m the bottom of the chain in our group, no one listens to me,’ she’s said to me before in an impressive and unbearably honest moment of self-awareness.

Half the time they act like a lynch mob, berate her over whatever little thing displeases them, or tell her off when she doesn’t understand something, laugh at her when she doesn’t get the joke, irony and sarcasm especially being lost on a child with ASD.

They accuse her of random misdemeanours, even of using her deafness as an excuse, such as for not being good at French. They tell her she could easily turn up her hearing aids or get new ones to magic problems away.

The reality is that Hayley pretty much tackles everything head on, studying languages even though it’s not compulsory for pupils with deafness, and often brushes aside offers of help from teaching assistants, wanting to fit in with everyone else.

Her friends have ostracised her many times before but this time it looks permanent.

But to Hayley’s credit, she’s handled this latest and final fallout stoically. She refused to let me intervene or report any of it – even when it became bullying.

And – hallelujah – she seems to have fallen in with another group, kinder girls, more inclusive, less needy than this group who thrive by picking on vulnerable people to boost themselves.

It’s early days, but here’s desperately hoping.

“No one wants to be surrounded by a hostile bunch making snide remarks

Tonight was just a blip. She’s had a bellyful of her ex-buddies ignoring or insulting her when she’s tried to be civil. She’s made up her mind to try not to let it get to her, but of course it does. No one wants to be surrounded by a hostile bunch making snide remarks, slipping sly swearing gestures.

They may be more sophisticated in some ways, but Hayley has grown up too and in many ways become more mature, with a wider perspective.

A lot of it’s down to the activities she does outside school, such as air cadets and Guides, as well as events with NDCS – finding solidarity in pulling together in a common cause with like-minded people has helped her to believe in herself, have self-respect whereas the others tore it down.

I think Hayley’s outgrown her former friendship group and knows she’ll be better off without them, can finally move on. Fingers crossed.