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

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.