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.

 

 

 

College trip to New York

Hayley’s growing up, becoming more independent than ever, and travelling halfway across the world with her friends…

Sunday early evening, at the computer

“OMG it’s soo amazing, we’re having a wicked time! Love you x”

Hayley’s messaging me from across the Atlantic. She’s eating breakfast (pancakes with maple syrup and bacon) and I’ve just cleared up after dinner (ham, egg and chips) at home.

She’s gone off on a five-day trip to New York with her college and I’m scrolling through a stream of photos she’s just posted up on Facebook – iconic cityscapes and landmarks, the Statue of Liberty, Times Square, the Empire State Building, American traffic cops mailboxes, ‘don’t walk’ lights at traffic signals, and of course endless snaps of food they’re about to eat, have just eaten or would like to eat…

Arms raised in the air

When I shelled out for the trip back in September when she started college, I thought it was tied in with her Hospitality and Catering course, was all about the gastronomic delights on offer.

But when Hayley said their itinerary included eating at Planet Hollywood and the Hard Rock Café, I was surprised. It turned out the trip was open to all at the college, whether hairdressing, engineering or floristry students.

I didn’t mind though, because to be honest it marked such a turning point in Hayley’s life.

She was massively keen to go because of course it was billed as the opportunity of a lifetime.

But the other reason she was so hell-bent on going was that her friends had put their names down and she so desperately wanted to go with them.

Regular readers might recall that Hayley has struggled socially throughout her school life from the age of eight when she was diagnosed as deaf. It wasn’t just the obvious things, the hearing aids, the ‘otherness’ of being the only child in school who was deaf.

It was a subtle mix of things to do with deafness that combined and conspired to set her apart. Having to sit in a certain place in the classroom so she could hear the teachers and see their face to lip-read, rather than with a group of friends. Time off for hospital and audiology appointments and surgery to remove the cholesteatomas that grew aggressively in her ears.

Never quite being in on what was required next in class, where to go, what to do, though she watched her classmates eagle-eyed to try to keep in the loop.

Always being one step behind in the conversation, processing slower, not getting the joke or getting it one beat too late, all the struggles of trying to hear and make sense of everything in the noisy, fast moving din of the playground, everyone talking and shouting at once and on the move so that things were lost on her.

Having to be taken out of class for extra sessions to work on phonics and her word retrieval difficulties.

Yet Hayley was always so sociable, never stopped trying, but it so often didn’t go well for her and only got worse at high school. She spent a lot of the time feeling lonely, sad and isolated.

College proved a different story, a clean slate where she made friends, proper friends, with likeminded people who shared the same interests.

And the fact that at the other end of the college year they’re still good mates and experiencing the joys of New York together is testament to that progress.

Please note image is not Hayley