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.

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.

Making sure Hayley’s needs are met at college

It’s a whole new phase of life for Hayley as she prepares for her first term at college. She and Tiger Mum are determined to make sure her needs will be met from the outset…

Tuesday morning, outside Hayley’s college

Hayley and I are walking away from the vast buildings of the college that will be her new base for the next two years. We’ve been to a meeting with Dan from the additional needs team. The college seemed keen on promoting the support they can offer, so that gives me big hope. But then, bearing in mind how the special educational needs co-ordinator (SENCO) at Hayley’s secondary school was full of talk when Hayley started – of the support they could offer, how Hayley’s needs would be communicated to her subject teachers – and how little of it came to fruition, I’m wary. At college there’s no involvement from the Teacher of the Deaf who assessed Hayley termly at school, so I found myself feeling quite business-like about asking exactly what support they can provide.

Dan asked what support we wanted – exam access arrangements please (25% extra time and a separate room), we said, like she had at school. I explained that her deafness and slow processing skills entitled her to it. Dan said they’d give her a 45-minute writing assessment, then decide what support she needed. He said they’d put her on a six-week support trial initially, with copies of notes taken by the support and learning assistant (SLA) each lecture, plus help with assignments, then decide how much of it was needed ongoing.

So far, so good.

Battle-weary and wiser, I asked whether staff had any deaf awareness knowledge or training. I said I could send them some NDCS resources to help. He confidently responded that there were two BSL signers, and assistive technology. That’s great, but Hayley doesn’t use sign or radio aids. I tested the water a bit further, mentioning classroom acoustics. Dan said Hayley could sit at the front by the lecturer. I said there was more to it than that – Hayley needed to be able to see the lecturer’s face clearly so she could lipread.

I said deaf awareness was important; lecturers needed to realise that answers given by Hayley’s classmates in response to questions form part of the information everyone takes in – but would be lost on Hayley if they were sat behind her and she couldn’t see/hear them. A simple remedy is the lecturer always relaying the answers back to the class, so that Hayley too has the information.

Dan was clearly unaware of the issues, floundered a bit and said he’d never worked with deaf students before, so I again offered to send some NDCS resources, and he said okay.

As we walked to get our train afterwards, I expected a telling-off from Hayley about being difficult and embarrassing her, but was surprised when none came. “They seem much more helpful than school were,” she said, sounding hopeful. “Especially if they get the information.”

So that’s both of us that have moved on then. Cause a fuss, call them out. Don’t be fobbed off or assume they know best and will put everything into place. We made that mistake before.

The Exam Monster

Hayley’s family are hunkered down waiting for the danger to pass as she runs the final gauntlet of her GCSE exams

Saturday afternoon

I’m in the hallway straining to hear anything from upstairs but there’s only silence.

I know the exam monster is in its room. The door is shut with an angry orange glow around it. We’ve heard occasional shrieks, cries and gnashing of teeth, rampages to the kitchen for human, preferably chocolate-covered, bones to feed the beast, followed by house-quaking slams of her door.

But right now it’s quiet. It can mean only one of two things – she’s revising or she’s on Facebook. Dare I pluck up the courage to find out? Hmm, not yet. I’ll hold faith a little longer, which will encourage her if she’s doing the right thing and perhaps induce guilt-powered resolve if she’s not.

We’re several weeks into the GCSE onslaught, with less than a fortnight until it’s all over, bar the shouting. The house is a tinderbox, the advice is not to even make eye contact, definitely not ask how it’s going or offer any tips about revision or exams. Or anything. But all that aside, Hayley’s being a trouper, struggling along, knuckling down to study. She is more practical than academic and it doesn’t come easy to her.

Also, on the bright side, exam access arrangements are in place, meaning 25% extra time and a separate room – and I was notified in advance. That’s progress from two years ago when Hayley was told by the SENCO at the end of a class exam that she wasn’t eligible for extra time and should leave the room along with non-special needs pupils. This was Hayley’s right yet the SENCO didn’t know and I had to battle for it.

There have been wobbly moments, including Hayley walking out of her Art GCSE exam on the final day. But there were trying circumstances – a blaze broke out when the pupil next to her accidently set light to her own final piece. With the whole room in shock, the poor girl in tears, Hayley and another girl upset about damage to their final piece from water used to douse the flames, it perhaps wasn’t the moment for the art teacher to tell Hayley her home-prepared sketchbook pieces weren’t very good.

Hayley’s already low self-esteem knocked, still unnerved by the blaze, she’d shouted that she was obviously rubbish before running from the room. I was worried she’d be disqualified but it’s all okay. I told Hayley I understood but it probably wasn’t good to make a habit of it.

Hold it together Hayley, you’ve come this far. The light at the end of the tunnel is nearly here, last exam on the 11^th.

The prom ticket’s paid for, the dress tried on, the ‘Leavers 2015’ hoodie ordered. Just keep going Hayley, hold your nerve and keep your head down for another fortnight. Then you can embrace a summer of freedom and the next stage of your future.