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 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.