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.

Swimming gives Hayley earache

It’s August and the swimming season is in full swing, which for Hayley and lots of other deaf children invariably ends up with a trip to the doctor…

Thursday afternoon, at home

Hayley’s appeared in my office doorway, her palm pressed against her left ear, shoulder hunched up protectively, pain etched on her face. I’ve seen that look before.

“How long’s it been hurting?”

“On and off since yesterday,” she replies, allowing me to give her a hug (only acceptable on special occasions these teenage days, only brief and definitely not in front of anyone else).

side profile sick young woman having ear pain

Hmm, that was the day Hayley and her mates went swimming. Just before that, she’d taken her little nephew to the local pool and before that she’d been off at Cub camp as a young leader, which had involved many water activities.

It’s the same most summers, or whenever there’s lots of swimming. Sometimes one or other of her ears begins to hurt then subsides after a day or so, other times it turns mean and develops into an ear infection. I know many deaf children pick up ear infections easily when swimming, and Hayley’s no different.

She isn’t supposed to get her ears wet at all because she’s had mastoidectomies to remove cholesteatomas in both ears, so when she goes in any water (even the shower) she wears swim moulds made for her by the audiologist. There’s often a full blown panic when she’s packing to go away somewhere and suddenly can’t find her swim plugs.

But even so, however careful Hayley is, after lots of swimming, ear infections have a tendency to creep in.

I remember a long awaited holiday in Greece 10 years ago – it was blissful, most days were spent in the pool with her two brothers. But then the ache began, by bedtime it had turned into searing pain and Hayley, eight then, was up in the night crying in agony.

We set out early next morning in search of an ENT doctor in the main town. The lovely doctor, who was thrilled to see her mastoidectomy scar and hear the word cholesteatoma (of Greek origin I guessed?), did a very thorough examination and prescribed antibiotics. Thankfully the pills kicked in quickly and stopped the pain.

Not wanting to see the rest of her holiday ruined, the doctor said Hayley could go in the pool after a couple of days, but not put her head underwater. He also said to stop using her ear moulds, which would keep re-infecting her ears, and gave us some cotton wool and Vaseline to use instead. So all was not lost.

Right now, I’ll whizz her up to our GP to check if it’s an infection. I think it’s also probably time to ask for an appointment with the audiologist to check if Hayley needs new moulds made, in case her ears have grown.

Swim plugs – just another example of those extra little things that being deaf involves. But also one more thing that Hayley has learned over the years to manage herself on the road to independence.

Please note photo is not of 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!