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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The Exam Monster

Hayley’s family are hunkered down waiting for the danger to pass as she runs the final gauntlet of her GCSE exams

Saturday afternoon

I’m in the hallway straining to hear anything from upstairs but there’s only silence.

I know the exam monster is in its room. The door is shut with an angry orange glow around it. We’ve heard occasional shrieks, cries and gnashing of teeth, rampages to the kitchen for human, preferably chocolate-covered, bones to feed the beast, followed by house-quaking slams of her door.

But right now it’s quiet. It can mean only one of two things – she’s revising or she’s on Facebook. Dare I pluck up the courage to find out? Hmm, not yet. I’ll hold faith a little longer, which will encourage her if she’s doing the right thing and perhaps induce guilt-powered resolve if she’s not.

teenager exam

We’re several weeks into the GCSE onslaught, with less than a fortnight until it’s all over, bar the shouting. The house is a tinderbox, the advice is not to even make eye contact, definitely not ask how it’s going or offer any tips about revision or exams. Or anything. But all that aside, Hayley’s being a trouper, struggling along, knuckling down to study. She is more practical than academic and it doesn’t come easy to her.

Also, on the bright side, exam access arrangements are in place, meaning 25% extra time and a separate room – and I was notified in advance. That’s progress from two years ago when Hayley was told by the SENCO at the end of a class exam that she wasn’t eligible for extra time and should leave the room along with non-special needs pupils. This was Hayley’s right yet the SENCO didn’t know and I had to battle for it.

There have been wobbly moments, including Hayley walking out of her Art GCSE exam on the final day. But there were trying circumstances – a blaze broke out when the pupil next to her accidently set light to her own final piece. With the whole room in shock, the poor girl in tears, Hayley and another girl upset about damage to their final piece from water used to douse the flames, it perhaps wasn’t the moment for the art teacher to tell Hayley her home-prepared sketchbook pieces weren’t very good.

Hayley’s already low self-esteem knocked, still unnerved by the blaze, she’d shouted that she was obviously rubbish before running from the room. I was worried she’d be disqualified but it’s all okay. I told Hayley I understood but it probably wasn’t good to make a habit of it.

Hold it together Hayley, you’ve come this far. The light at the end of the tunnel is nearly here, last exam on the 11th.

The prom ticket’s paid for, the dress tried on, the ‘Leavers 2015’ hoodie ordered. Just keep going Hayley, hold your nerve and keep your head down for another fortnight. Then you can embrace a summer of freedom and the next stage of your future.

Hayley’s earning money!

Hayley’s got a new job, a budding fledgling bank account and friends – the girl’s going places

Saturday morning, in the car

‘OMG! I can’t believe it, Mum look!’

I resist the temptation to squint at Hayley’s mobile screen as I’m driving.

‘How about just tell me so I can keep my eyes on the road – is it good or bad?’

I can’t tell from the exact nature of the shriek but veering towards good rather than tragic I’d say.

‘I’ve been paid over £100!’

Extreme close-up of hand holding a modern smartphone with a generic mobile banking app running. This is a version with Pound symbol. Note to inspector, concerning copyright etc: The whole screen (every single graphic element, including battery indicator) is designed by myself.

I’m driving Hayley to work – her new weekend job at a big children’s amusement farm near us. It really is the Holy Grail of the teenage job market in this area – and she’s just seen her first month’s wages in her online bank account.

Hayley can still barely believe she’s got the job; the competition is huge. It took a lengthy application form, complete with points-based psychological personality profiling scenarios to respond to, then a four-hour team-based assessment evening with 40 other applicants – and hallelujah she got it!

She didn’t mention her deafness, although of course her hearing aids are visible. We’d decided not to put it on the application form either as she needed no support to communicate – with her hearing aids plus a little lip reading she gets on fine.

I do wonder if it would’ve made a difference had she flagged it up. We’ve debated in previous job applications whether or not to include it, deciding on the ‘let’s not give them any reason to turn her down, illegal discrimination or not, and bring it up later’ approach.

I don’t believe people are deliberately discriminatory but I suspect often, through lack of knowledge, some might imagine deafness will present too many difficulties so it’s easier to just sift out the application, perhaps for other reasons.

I know not everyone would agree, but I think deaf and proud guerrilla-style is the effective way forward for Hayley in these instances. Get in the door, then there’s the chance to prove yourself, that your abilities are as good as anyone else’s.

So Hayley’s doing weekend shifts, some on the activities side but mostly in their cafes. This is great because she’s aiming for a career as a chef and her hospitality and catering college course lined up for September requires students to have a part-time catering job to support studies.

Hayley couldn’t be more thrilled. That girl loves to work, the money’s just an added bonus for her.

She loves it – the uniform, the team meetings, doesn’t even mind getting up at 7am on a Sunday morning (no me neither, honest…). She’s made friends too, which is fantastic; school’s been a struggle socially all the way along.

Already it’s done lots for her self-esteem. At 5.30pm when they all troop out, the farm army of weekend workers, it’s so good to see her happy little face, enjoying being part of something worth having.

I know she should be spending those hours revising, I’ve clocked the looks from other parents of Year 11s, but as far as I’m concerned Hayley needs mates, self-esteem and a solid work record more than she needs top grades.

Deaf awareness at Christmas

Day after Boxing Day, busy Christmas household

I knock gently on Hayley’s door and peer round to see her sitting up in bed, duvet pulled up to her chin, headphones on.

“Thanks Mum.” She smiles gratefully, taking the hot water bottle and paracetamol I give her.

She’s not ill, just suffering from a headache and taking some time out away from the madness.

If there’s one thing Hayley loves it’s Christmas. She’s very sociable, loves parties, adores her little nephew and young cousins and is addicted to chocolate – what’s not to love!

But over the years I’ve realised it’s not the easiest time for her, as deafness brings extra challenges when there’s so much going on and an onslaught of guests.

Christmas dinner

There’s the obvious increase in chaotic noise levels, with everyone chattering at once, making it hard for Hayley to follow. She often ends up with a headache from her hearing aids amplifying all the extra noise.

And many of the visitors are people we don’t see too often so they are not deaf aware, and this adds to stress and sense of exclusion for Hayley when she can’t easily join in.

One likely flashpoint is the dinner table. Mealtimes with a dozen or more people crowded round, all talking over the clatter and scraping of plates is a minefield for Hayley.

As well as the din she struggles to follow the pinball nature of the conversation ricocheting around the table, as well as not being easily able to lipread because she can’t see everyone’s face.

So she often misses bits or perhaps the main point. Someone – usually me, her dad or her brothers – will stop to explain to Hayley what she’s missed. It makes for an interrupted flow of conversation, which we’re used to, but visitors don’t always understand or show patience and consideration towards her.

Hayley often ends up feeling excluded, leaving her very frustrated and giving her self-esteem a bit of a hammering, even more so when she picks up on the exasperation of some guests.

We of course want to avoid these situations, but don’t want to make a big deal of it which would embarrass Hayley and make our visitors feel they’re being lectured, so it’s a tricky balance. We just tend to drop in deaf awareness tips casually and hope guests pick up on it and follow the example of the rest of us.

These seasonal gatherings of non-deaf aware visitors are also a prime time for over use of the ‘Oh it doesn’t matter’ response when Hayley says ‘pardon?’ It is a huge insult to someone who is deaf – the phrase is banned in our house – and likely to make her blood boil.

“If it’s important enough to bother saying to everyone else, then why aren’t I important enough to bother repeating it for me?” she quite rightly used to challenge her brothers.

They’ve grown up learning why it’s important and will repeat it to others who fall foul of the rule. Hopefully other guests catch on too.

One thing’s for sure, over the years things have got easier to deal with. We know that time out for a bit of peace and quiet is a good idea for keeping Hayley’s equilibrium.

And with Hayley and her brothers maturing, and perhaps deaf awareness messages getting through to the odd guest, the extra stresses and challenges of having a deaf child are definitely easing – shame I can’t say the same about the rest of Christmas!

Please note the image is not of Hayley.

The balance between school work and activities

Hayley’s looking forward to the Christmas holidays after a demanding term in her final school year, while Tiger Mother is encouraging her to cut back on out of school activities.

Saturday morning, elbow deep in revision diaries and the family calendar

Hayley’s counting down the days until the end of term, getting more excited with every little chocolate reindeer that falls out of the windows in her advent calendar. It’s an exciting time evidently, Christmas, even for a 16-year-old – long may it last, I say.

31167_fabric_tree_advent_calendar

It’s also been quite intense at school so she’s looking forward to the holidays. The fact is it’s her final year at school – I can’t believe I’m saying it! – and the pace is hotting up. Lots of hard work is required. And earlier this month they started their mocks, which was quite a shock for her as the realisation hit how much effort is needed to succeed in next year’s GCSEs.

“Hayley’s got to knuckle down this school year”

Hayley’s got to knuckle down this school year and that means dropping – albeit very reluctantly – some of the many and varied out of school activities she usually does. There’s been a fair bit of wrangling over exactly what she can still fit in without it affecting her school work.

I’ve always encouraged her to take part in everything going – Guides, sports clubs, air cadets, work. She struggles socially due to her deafness and social communication difficulties, and having structured activities to go to has really paid off; it’s done her a power of good in terms of confidence, self-esteem and just learning about the world and how to be in it. It’s also equipped her with experience that might help her get a job in the future. But now there’s got to be a compromise between fun/experience and nose to the grindstone studying.

“Leadership experience will help her personal self-development”

She dropped Guides – easy because she was too old at 16. Ditto the local youth enterprise scheme, which gave her four hours’ paid work a week. But she is looking for a Saturday job, doing tennis every Monday and still going to air cadets twice weekly, though that’s under review. And now she’s decided to try Explorers, the follow-on from Guides and Scouts, which involves doing one night a week plus an extra evening as a young leader for Cubs. I can see the value of it though, as well as the fun. Leadership experience will help her personal self-development and possibly boost her job chances in the future.

“She’s not strong academically”

It’s just trying to decide together how far to tip the balance. She’s not strong academically, so has to try harder to get the minimum grades. But there again…

Aaargh, I don’t know!

Hopefully she’ll soon see for herself she can’t do it all and drop some activities of her own accord, it’ll be better if it happens that way. And I can always remind her about the NDCS Young Leaders courses next summer, which have an accredited leadership certificate – GCSE exams will all be over bar the shouting by then, so she’ll be able to throw herself into it to her heart’s content.

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.

Deaf teenager Hayley loves her new job as a waitress!

Hayley couldn’t be happier at her new Saturday job as a waitress, and Tiger Mother’s so proud of how she brought up the subject of her deafness at the interview.

The waitress scowls over at me and I look away trying to keep a straight face. She’s just done a very professional job of taking down our order and bringing the drinks over to our table, not a drop of cappuccino spilt nor a teaspoon clattered in its saucer.

She’s pretending to be cross because we’re her family and friends who’ve all crowded in to try out the place where she’s now got a Saturday job, and we’re making her feel embarrassed.

Well, what are families and friends for!

Seriously, Hayley couldn’t be happier. She loves the idea of serving customers and using a till, and she also gets taught how to make a whole range of cakes and cookies – that’s right up her street, baking being her first love.

Image

Hayley was a bit worried at first; that she would mess up, maybe not hear instructions or take down customers’ orders wrongly, especially over the din of the coffee machines and coffee bean grinders. Or that she would maybe just be clumsy and drop everything, embarrass herself with all manner of clangers nothing to do with her ears!

“We talked in advance about what she would say to the proprietor about her hearing”

When Hayley went along to be interviewed for the job we talked in advance about what she would say to the proprietor about her hearing.

It’s a question of trying to achieve a balance – not wanting to draw attention to her deafness, which she hates doing, yet ensuring that people know she may need things repeating if she hasn’t quite heard, and that it’s helpful if she can see their face so that she can also lipread.

“When some people see a person with hearing aids they assume they can’t hear anything”

And there’s also a matter of reassurance. When some people see a person with hearing aids they assume they can’t hear anything and panic that they won’t know how to communicate with the deaf person. All very unnecessary.

So Hayley pointed out to him that she had hearing aids. ‘In case it shocks you if you suddenly notice later!’ she told him, in a light hearted way.

It took me aback actually, that she had the confidence to do it that way – good on her. She’s come a long way to be confident enough to make a joke to someone she’s never met before and in a fairly formal situation.

He played along with her joke, feigned shock, then quickly reassured her he’d keep it in mind and make sure she could hear him.

And so far it’s all been fine with no problems. Some of the equipment is noisy – most of us would be hard pushed to hear over it – but Hayley just has to work round it, waiting until it’s stopped before taking orders or asking for instructions.

Luckily the rest of the time there’s not too much background noise as the acoustics are pretty good – it’s vintage décor so it’s carpeted and wallpapered, which all helps.

“You can almost see her blossom by the day”

She’s doing really well, they seem pleased with her and she’s loving every minute of it. It’s done her a lot of good and really helped her self-esteem. You can almost see her blossom by the day.

And it’s shown me that Hayley’s future isn’t some far off event to be worried over or stressed about – it’s here now. And she’s doing great.