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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Sticking with college

Hayley’s been struggling with college, but there’s good news on that front and a change of direction avoided

Thursday evening, in the hall

Hayley’s just come in the door and she’s smiling, which is surprising given that she’s just done an hour of maths tuition.

Student drawing a chart

How was it, I ask.

“Yeh, good,” comes the fairly shocking reply.

Hayley hates maths with a passion; I’ve seen her often reduced to tears by a page of algebra or trigonometry. She really struggles not just with maths, but most academic subjects. It’s due in part to her deafness, I guess, being left behind to flounder throughout school, especially as she has other learning issues such as slow processing skills and poor auditory memory.

And this is why she’s been so anxious recently – she was told by one of her college tutors that she needs a C grade in both Maths and English in order to pass her level 2 diploma in Hospitality and Catering.

Some of you may remember from last month that while Hayley loves the cooking and front of house part of her course, she’s become so frustrated and fed up with the academic side, the written assignments as well as English and maths that she was desperate to leave and get an apprenticeship instead.

I’d tried to talk her out of it as it seems a better, more higher salaried option to enter her chosen career with as high a qualification as possible.

Well since then, I’ve been in touch with National Deaf Children’s Society about it and they told me it could be discriminatory if a vocational diploma pass was dependent on English and maths results.

So I contacted the college and they confirmed that the diploma is a separate qualification, not dependent on maths and English grades. It turns out that it was one misinformed tutor who misled Hayley, so they are now making sure the issue is clarified to all the tutors – and a lot of weight has been taken off Hayley’s shoulders!

She does still have to keep doing her maths and English until she’s 18 or gets a C grade, and of course they’re qualifications and skills that will be useful throughout life.

Hayley’s course leaders have now transferred her from GCSE English to English functional skills with the plan being for her to work up from there towards a GCSE. And I’ve arranged for some maths tuition from a local tutor for an hour once a week, to help her confidence. It’s not cheap, but hopefully it will give her a boost.

Onwards and upwards…

Hayley’s final year at school

Tiger Mother is excited for Hayley’s future as she begins her final year at school

Wednesday, a calm empty kitchen after the morning chaos

Oh the freshness of the new school year, the hope and renewed enthusiasm. Clean copy books, new haircuts, unladdered tights, and, dare I say it, clean hearing aids. Like springtime in autumn. And it’s Hayley’s final year. It’ll be an uphill slog to get through GCSEs before deciding next options.

Catering is absolutely her thing, ever since she won a first prize trophy for cake baking aged 11. There’s something about cooking – where deafness doesn’t matter, where you can focus and disappear into your own little world of creating delicious things – that appeals to her. So she’s deciding whether to gain an NVQ at catering college or try for an apprenticeship.

Students in a school hallway

Summer’s been busy – working in a coffee shop, baking and waitressing, and also washing up in a pub where the chefs let her help with food prep. All this experience is like money in the bank for Hayley – far more valuable to her than any amount of exam certificates. Hayley isn’t one of the A-star students; her targets are Cs or B.Techs, which will be a struggle, but she doesn’t mind and, to be honest, neither do I. I’m ambitious for all my children, but only in as much as they throw themselves at life, grab every opportunity, work hard and be kind – that way they’ll be happy.

“What she lacks in academic ability she more than makes up for in sheer determination”

Hayley may not be university fodder – but why should that be the Holy Grail for every school-leaver anyway? But what she lacks in academic ability she more than makes up for in sheer determination, conscientiousness and common sense. She’s a trier and a grafter and has turned her disadvantages into advantages; with her deafness and other learning and social communication difficulties, she’s learnt perseverance and gained strength.

Hayley will be the first to offer help and to say yes to any challenge, whether it’s marching the beaches of Normandy with air cadets to raise money for wounded soldiers (tick), zip-wiring into an icy Welsh mountain lake (tick), or competing in tough cook-offs in Young Chef contests every year at school since Year 7 (four ticks). It’s all helped boost her confidence and self-esteem, along with NDCS events she’s attended.

“She might be about to surprise the lot of us by joining the RAF”

And here’s a turn up that’s astounded her brothers – she might be about to surprise the lot of us by joining the RAF. At school, an RAF careers officer said they were desperate for chefs and would take her at 16. After some basic military training she’d get catering training, gaining an NVQ, all on a wage most teenagers can only dream about.

What a thought; little Hayley at 16 off in the big, wide world. Finally being judged by her practical abilities and lovely helpful self, not how she performs in class. Free to fit in and make friends, away from the rigid confines and expectations of peers at school, free to be who she is and blossom into a young adult. I’ve long felt things will be better for Hayley when she’s left school behind, whatever path she follows.

I’m so excited for Hayley. I’ve always told her the sky’s the limit – and it really is…

Hayley’s ASD has been ‘undiagnosed’!

Tiger Mother’s had some great news – Hayley’s ASD has been ‘undiagnosed’! But Hayley’s confused and wondering how she will now explain to others about why she finds things difficult.

Well here’s a turn up for the books.

I’ve just come home from a hospital appointment to review Hayley’s ASD. She wasn’t with me – the letter said to come on my own.

I did a lengthy multiple choice interview with the paediatrician, covering detailed aspects of Hayley’s behaviour since a baby.

Then I was called back for the result – Hayley doesn’t have ASD. Even though for the last six years, we’ve been told she had.

Yes, he agreed, even given her deafness, she struggles in various areas of understanding, inference, social situations and learning, but it’s not ASD.

Autism

I’m confused but incredibly pleased and as Hayley’s arrived home from school I’ve told her that she’s been ‘undiagnosed’.

‘So I haven’t got ASD?’ says Hayley. ‘But you said I’d always have it?’

I nod and shrug.

“How will I to explain to everyone about why I find things difficult?”

She looks bereft – quite panicky. ‘But Mum, how will I to explain to everyone about why I find things difficult?’

Good question.

But it’s great news, I tell her. It means the areas where she struggles – socially, making inferences, taking in anything other than simple short chunks of information – she will likely progress as she matures.

“We assumed her ’otherness’ was part of her deafness”

In the first years of school, we assumed her ’otherness’ was part of her deafness, always one step behind, never quite in the flow, not quite gelling with her peers – missing lots of information whether spelt out or the subtle nuances and interactions at lightning speed between people.

She was almost always excluded by her peers; no one came round to tea. While her brothers’ party invites stacked up, there were rarely any for her, other than one or two close family friends’ children.

Hayley found it hard to grasp information, no more than one or two simple instructions could be retained at a time. She didn’t get jokes, couldn’t work out idioms.

She had expressive language problems, and other children didn’t have the patience to listen while she tried to get her thoughts out.

A speech and language therapist friend diagnosed Semantic Pragmatic Disorder – associated with ASD – and then the school’s Senco suggested a paediatrician assess her.

This involved me being questioned me for 20 minutes, Hayley seen for two minutes, and there it was – a diagnosis of ASD.

I was sad, mourned the person she wouldn’t become that I’d thought she would, worried about her future happiness.

But the main thing was to get her the right support – not that a diagnosis helped, with no SEN statement. And so ensued the battle we’ve waged ever since.

We’ve had fantastic support from NDCS, but there was no provision in school for ASD.

“It was hard to figure out which issues were due to deafness and which to ASD”

It was hard to figure out which issues were due to deafness and which to ASD. My own answer was to throw Hayley at everything in life I could, to gain as much experience as possible to help fill out her missing ‘insight’. Guides, judo, tennis, our local NDCS group and later Air Cadets.

Gradually we saw a change in her. Though still one or two steps behind her peers, as she matured she was ‘getting’ stuff more – life, people, social situations, jokes, irony.

She’d always had empathy, shared nicely, been considerate and thoughtful – but weren’t these all the things ASD isn’t?

“I began to question the diagnosis”

I began to question the diagnosis. At an appointment with the chief paediatrician, I couldn’t help notice her quizzical look as Hayley smiled, made eye contact, chatted, laughed.

The woman shot me a look: ‘It’s almost impossible to see any traits…?’

I nodded emphatically, she offered to have Hayley re-assessed and here we are here today.

So Hayley has lost her instant explanation shield when people look at her askance, pick up on her struggles.

But on the plus side, I think she’ll keep improving with experience, especially as her confidence grows and she helps those around her to be deaf aware and more understanding of the issues involved.