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.

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 gives as good as she gets!

Hayley’s growing up and developing a thicker skin. Increased confidence from being at college and plenty of stick from her brothers over the years have matured her nicely, making sense of humour failure much more a thing of the past.

Friday night, in the kitchen…

“Are you completely mad?” A question for Hayley from younger brother Harry, who’s exchanging ‘d’oh!’ looks with older brother Lee, before both of them double over laughing. Hayley is of course the butt of their humour. That’s brothers for you, deaf sister or not.

“You really think there’s a horse in the fridge?” splutters Lee. Hayley shoots them each a glare, but it’s only friendly fire. She’s too busy getting ready for a Christmas party with her college mates to care about their mickey-taking.

Teenage-girl-smiling

“Well that’s what it sounded like,” she says, with dignity and a withering look, taking advantage of their incapacity by whipping a big slice of pizza out of their boys’ night in takeaway box.

Someone had just said something about the sauce being in the fridge and Hayley thought they said horse. Hayley shrugs it off. She’s come a long way. In some ways I think her deafness and the challenges that arise from it have been character forming, toughened her up some, and that’s no bad thing. Her brothers of course should know better. Deafness doesn’t make you stupid or crazy, it just means you can’t hear accurately and it’s not funny.

But the problem is, sometimes the resulting absurdity is funny, even though I’m certain that’s not politically correct. Luckily Hayley sees it that way too. Being able to laugh at yourself has to be one of the best defences, as well as an appealing trait. And it’s all good practice for the idiots you meet in this life.

I recently had a jarringly unfunny incident while at the opticians. In conversation it came up that I write this blog for NDCS. The professional’s witty riposte? “Pardon?!” followed by riotous laughter at his own joke. I just stared at him. Unbelievable. It was meant to be harmless ‘fun’ but laughing just because someone’s deaf is clearly not funny.

But worse than this was an advert in one of the free mags that plops on the doormat every month, and it keeps coming back to me, because it was so insulting. It was a page selling ‘invisible’ hearing aids, and the premise was that hearing aids are an unsightly embarrassment. The text included a reference to no one having to have ‘banana-like’ things in their ears. It was truly outrageous, at the level of childhood name-calling, insensitive, damaging and wrong in every way. The magazine disappeared into the recycling bin and I didn’t get the chance to complain, which is probably why it keeps bugging me.

But I think there’s a vast difference between such insensitive insults and life throwing some ridiculously absurd moments at you.

Hayley agrees. And she gives as good as she gets. “Enjoy your saddo night in, losers!” she smiles, and sashays out the door.

Please note image is not Hayley

Beating the bully

Hayley has been thriving at catering college, taken to it like a duck to hoisin sauce. Now something’s stirred things up and Hayley’s panicking…

Tuesday morning, at the computer

‘Mum, what am I going to do? It’ll ruin everything!’

It had to come. The transition to college had run too smooth since Hayley started in September.

But this is a nightmare. Yesterday Hayley came rushing home, slamming the door behind her like the enemy was after her, hell bent on her destruction. Which is kind of true.

Teenage girl covering her face

A bully from Hayley’s old school had turned up like a bad penny, transferring onto her course then being put into Hayley’s tiny learning group of four.

And to add insult, this enemy is not especially hell bent on her destruction, not one of her arch enemies, just a casual bully who takes mild pleasure in humiliating her.

For the last year of school This Girl made a point of ‘hilariously’ addressing her as Laura, some poor girl in their year who was obese and a figure of ridicule, because she said Hayley looked like her.

It ruined Air Cadets for Hayley when this bully joined. Hayley had been there three years, loved it, earned respect from other cadets and the officers. It was a boost from the struggle she had at school academically and socially.

But then This Girl arrived, started the bullying name game and succeeded in corralling off a friend Hayley had made there, then shutting Hayley out.

Along with others from school, she’s been on Hayley’s train each morning, attending another course at the same college. Hayley’s been walking a knife edge as the ‘Laura’ humiliation continued.

But to think she was now on the same course where Hayley’s made a fresh start is unbearable.

I had no intention of being involved in the nitty gritty of her college life, but I’d no choice. I emailed the lecturer, explained how Hayley had struggled with bullying issues throughout secondary school, which This Girl had been part of – and how even now on the train it was continuing.

Starting college had been the most amazing feeling for Hayley, a fresh start full of hope. Now she faced the prospect of the baggage following.

I acknowledged that it can’t be easy to please everyone, but I was talking about a girl who’d struggled, vulnerable because of her deafness – which for many children with hearing loss so often leads to isolation and social exclusion – and also social communication difficulties.

I said how in spite of the challenges, which had often left her utterly miserable and without friends, Hayley remains incredibly game and sociable. She’s been so happy at college, making new friends and getting on well, the clean slate with a more mature environment we’ve all desperately wanted for her.

I begged the lecturer at least not to have them in the same learning group.

And you know what? She emailed right back this morning saying she’d immediately take her out of Hayley’s group, that she’d monitor things and we should keep her updated of any problems.

Jaw dropping. I text Hayley. These people have already done more in one swoop than her school did for her in all her time there.

If you are deaf and being bullied, or if you have a deaf child who is being bullied, check out NDCS’s free resources.

Hayley’s special bond with animals

Hayley’s been at Guides’ camp for a week, and the family dog has missed her greatly. Tiger Mother talks about Hayley’s special bond with animals, perhaps due to her deafness and communication problems.

Saturday afternoon, in the garden…

I’m standing outside the back door, trying to restore order and call the dog to heel, but I’m failing, partly due to being hysterical with laughter.

There is a canine streak flashing round the lawn, burrowing through baskets of dry washing, leaping over garden chairs, overturning flower pots and bounding up onto the trampoline. If only she had her own mobile I’m certain she’d be doing backflips and taking selfies.

Each round of the garden that the dog makes is punctuated by a spring-loaded leap up at Hayley, covering her in a slobber of doggy kisses, before galloping off for another victory lap.

dog

Up until five minutes ago, all was calm. Hayley’s been away at Guides’ camp for a week and the house has echoed with the sound of, if not silence, then low volume anyway. The telly’s been on quietly, music in the kitchen at a level where you can still hear a jet immediately overhead. And no shouting matches with her brothers.

“The dog has missed her terribly”

The dog has missed her terribly – sulked, taken up watch by the front door and refused to eat her dinners, the ultimate sign of devotion as she’s a very foodie dog.

Now Hayley is home. She calls sternly for a ‘down’ and the dog drops like a stone at her young mistress’s feet, looking up at her with love and devotion. Now that’s how it’s done.

Hayley has a way with the dog that shows the closeness between them. It’s great to see, especially when things are not going well with her at school, or when she’s fallen out with her friends. The dog is like her best mate. Sometimes she is her best mate.

Hayley loves all animals, does really well horse riding, and seems to have an affinity with every creature that she meets, even a tortoise that we adopted for a week recently.

“She really is in her element with animals”

She really is in her element with animals and I do wonder if part of the reason is down to her deafness and problems with communication. The constant struggle Hayley has trying to hear conversation, to keep up with the lightning flow of chat between her peers and others. And the difficulty she has trying to get her words out, often left behind as the conversation moves swiftly on.

All incredibly frustrating and we at home often feel the backlash, when she unleashes it on us in the safety of her own home after a long, tiring, wind-up of a day.

But with animals, we’re all in the same boat. None of us can speak their language, so we have to set up a form of communication between them and us that can work. Some of it is spoken, some is signed – as in hand cues for a dog, riding aids such as leg contact and reins contact with the mouth for a horse.

All perfectly logical, one to one, and for once on a level playing field for Hayley. No missed consonants or having to constantly say ‘pardon?’ or be told it doesn’t matter.

In seconds, Hayley’s taken her eye off the dog and been floored by a hairy heap. It’s hilarious to see so much love and devotion in action – and even occasional obedience…

Why is Hayley’s friend upset with her?

Hayley’s having a tough time understanding why one of her friends is upset with her, and Tiger Mother’s desperately trying to help resolve the situation.

“I’m not going to school! If you try and make me I’ll…”

The next few words are lost on me as Hayley’s voice is muffled by the duvet which she’s yanked up over her head.

Things have gone wrong again. I feel the old familiar heart-sink as I cast around my brain for problem solving ideas and encouraging words.

“Hayley has struggled socially ever since the start of junior school”

Hayley has struggled socially ever since the start of junior school, the age when children become razor sharp when it comes to noticing if someone is not exactly in tune with the rest of them.

For a long time, she had a very dysfunctional and often spiteful group of girls she called her friends. So many days she’d come home in tears, beating herself up over how yet again she’d somehow managed to upset one of them. It was honestly like watching someone you love trapped in a bad marriage with no idea of how to get out of it because there seemed no alternative. ‘I know they think I’m bottom of the group but it’s better than not having anyone,’ Hayley sobbed in one insightful outburst at home.

Thankfully she finally managed to wean herself away from them and in Year 10 settled in with a small group of friendly girls. Since then she’s been a different girl; it’s been such joy to see her happy.

Until now. The first I heard of it was a text from Hayley yesterday saying something happened at school and urging me to text back quickly to tell her what to do.

She explained that her friend keeps walking away while Hayley’s talking to her, which finally got Hayley so frustrated that she told her not to keep doing it.

Image

Now her friend is refusing to talk to her and has deleted Hayley from her social media networks. I can’t get to the bottom of it, despite Hayley going over and over it.

“Hayley does struggle to get her words out”

Hayley does struggle to get her words out, often. We have to try to find the patience of at least 10 saints to wait while she struggles for the right words, forgets her train of thought, supplies endless unnecessary detail and goes around the houses to get her point across.

It’s very frustrating all round, not least of course for Hayley. None of it helps her self-esteem or her social standing.

It’s long been a problem, something to do with processing skills, word retrieval issues, and her undiagnosed deafness early on when all the neural pathways are being forged by sounds and when the linguistic filing system of the brain is being formed.

Gradually though, Hayley has improved, learning to be aware of the listener’s needs rather than just desperately focusing on making herself understood. I think maturity is the answer; things will continue to improve.

But in the meantime, there’s this current mess to sort out.

I coax her out from under the duvet with the promise of scrambled eggs and a reminder that her beloved faithful hound is waiting downstairs.

“Explain you don’t know why you’ve upset her and you didn’t mean to”

It gives me a few minutes to try to form a strategy. ‘Go up to her and apologise, explain you don’t know why you’ve upset her and you didn’t mean to,’ I say.

‘Done that, she walked away,’ says Hayley, miserable. This had been on the advice of her younger brother Harry, whose counsel she’d actually sought at break time.

‘Okay, well give her some space,’ I tell her, ‘and meanwhile, arrange to do something nice at the weekend with one of the others.’

Hopefully by Monday, things will have blown over. If not, then at least she’ll have had a nice weekend, and strengthening up alternative friendships is no bad thing.

I find myself crossing my fingers and desperately wishing I had a magic wand…

The importance of friendship

 

Tiger Mother catches her 15-year-old moderately deaf daughter Hayley up late, but is pleased to find out why…

I peek around Hayley’s bedroom door expecting to be greeted by the sound of gentle snoring, but it’s quiet and there’s a little tell-tale glow illuminating the room.

“Hayley is in bed texting when she should be well asleep”

Hayley is in bed texting when she should be well asleep. What! She’s a nightmare to get up in the morning for school as it is!

But I take a deep breath before I start yelling. She gets caught out because, unlike her younger brother Harry, who hears me coming up the stairs and swiftly shoves his phone under his pillow, Hayley can’t hear me after she’s removed her hearing aids for the night.

Bit unfair really. So I just keep it to an annoyed but calm approach instead.

Texting in bed

And Hayley is so pleased about something she doesn’t even have time to get defensive and grumpy with me.

‘But Mum, it’s one of the girls I made friends with at the weekend – she texted me!’

I can see Hayley’s beaming smile in the glow of her screen. And I can’t be cross anymore because I’m really pleased for her.

“Hayley struggles with friendships”

Hayley struggles with friendships and has had a really awful time over the years, especially at school where for a long while she was stuck in a group of girls, some of whom were quite vile to her. It destroyed what little self-esteem she had and she’d literally spend hours sobbing some evenings after a particularly horrible day.

So when an NDCS Get Creative Drama weekend came up, I booked her onto it. Hayley’s had some great times on NDCS events before and always comes home buoyant and more confident.

She thoroughly enjoyed the Drama weekend, where about 16 deaf youngsters, aged 11-15 years old, stayed in a lovely residential lodge and did activities.

They worked with a theatre group, taking part in drama, acting and storytelling. Over the two days they developed a play, created the plot, script and characters and when we families arrived to collect them, we were treated to a master performance.

It was fantastic to watch them, all these kids, most of whom didn’t know anyone else when they arrived, come together and perform some brilliant sketches in the manner of an old silent comedy film.

They’d clearly all worked hard rehearsing to get their miming and comedy timing right, but it was lovely that they were obviously enjoying themselves and totally comfortable in each other’s company.

“It was so lovely to see Hayley in the thick of it for once”

When the sounds of devoted parental applause finally faded, it was time for them to get their bags and go. But first came a frenzied scurrying round as they all said their goodbyes, hugged new friends and exchanged phone numbers – and it was so lovely to see Hayley in the thick of it for once, others coming to seek her out for goodbye hugs and phone number exchanges too.

‘Just five more minutes, please?’ begs Hayley from the depths of her duvet.

‘Go on then,’ I say, and shut the door.

Some things are more important than a bit of shut eye, and friendship is one of them.

Please note the image is not of Hayley.