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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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.

Students in a school hallway

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.

teenager exam

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 11th.

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.

Exam access arrangements for deaf teens (part 2)

Hayley’s upset and Tiger Mother’s frustrated because the exam access arrangements that were promised for Hayley haven’t been put into place.

The blazer is slung across the kitchen table, the school bag’s dumped on the ground, Hayley is slumped on the floor beside it. The pretence is that she’s cuddling the dog – who is lapping up this unexpected attention – but I know she is upset.

“Come on, how bad was it?” I ask, not daring to mention the maths test by name.

Silence. Nothing given away by the top of her head.

“You can tell me, I know how painful maths is…” I use my best jolly, coaxing voice.

Her face lifts up to me, a picture of long suffering stoicism as she shakes her head with doom laden portent.

“No you don’t! You don’t know what it’s like. Not when you don’t even half-finish the stupid test and get only five out of 45 correct, and Jonathan is calling you a simpleton and kicking you when you try to walk by.”

Hmm, situation does sound grim.

Hang on a minute – why is Jonathan in the special quiet room she gets for exams due to her eligibility for exam access arrangements?

He wasn’t in the quiet room, it turns out, and neither was Hayley – she was in the classroom with everyone else. And it seems she’s had an English test and geography test too, with no special arrangements.

Grrrrr. Really?

I spent the end of the summer term battling to get these exam access arrangements nailed down. When the Senco told me that Hayley didn’t need any special arrangements because her literacy levels were fine, I requested (having gleaned information from NDCS’s helpline) that she test Hayley’s processing skills.

Sure enough, like many deaf children, Hayley’s skills were slower than average, which meant she should have 25% extra time and a quiet room in which to do all exams, practice papers and teacher assessments.

This autumn term, the new Senco started and assured me that he had added Hayley to the school’s access arrangements list to ensure she received this entitlement from then on.

New Senco, new hope? Pah. Poor Hayley, who’d been left so confused up until this point, had finally been assured she’d be allowed extra time and a quiet room. I thought we’d finally sorted it.

Fighting down the familiar frustration, I contacted him asking why the arrangements hadn’t been put in place. He said that all staff had access to the list and that he would contact Hayley’s subject teachers to ensure it wasn’t overlooked again, as it was important that it became Hayley’s normal way of working.

I forwarded his emailed reply to Hayley so now she can see for herself what should happen, and will hopefully have the confidence to speak up or alert someone if it happens again.

It’s not a moment too soon, seeing as she is starting her two year GCSEs course – in fact she’s just been informed she has a BTEC exam later this month.

I’ll consider myself reminded that there is no room for complacency when it comes to my deaf child getting the support she needs at school.

Exam access arrangments for deaf teens (part 1)

When Hayley is denied extra time in her maths exam, a baffled Tiger mother embarks on a battle to ensure Hayley is given the Exam Access Arrangements she needs.

I’m sitting here fuming. I can’t believe how rubbish Hayley’s school Special Needs Coordinator (Senco) is.

As the new term gets underway, once again it dawns on me, the deja vu feeling of ‘oh god here we go again’ as familiar as the scuttle of crisp yellow autumn leaves along pavements and the long nights drawing in.

School. And with it the deflating inevitability of the battles ahead.

There are several to be had, but the biggest one has been trying to find out what special arrangements Hayley should have for exams and tests.

I recalled learning from NDCS that deaf students can have extra time, a reader where necessary and a quiet room. I foolishly assumed this would automatically be put in place.

“When Hayley asked about her extra time the Senco replied that she wasn’t entitled to it”

But then one day at the end of summer term, Hayley came home upset. They’d had a maths test and she hadn’t finished the paper. At the end, the Senco had taken some pupils off for extra time, but when Hayley asked about her extra time the Senco replied that she wasn’t entitled to it.

I was baffled but took it as a reminder to find out exactly what she should be allowed.

“Some deaf children are entitled to 25% extra time in exams”

I called NDCS helpline and they emailed me information on Exam Access Arrangements, including the fact that some deaf children are entitled to 25% extra time in exams. The information suggested asking either Hayley’s Senco or Sensory Support about her case.

Because the Senco has been ineffectual up until now, I decided to contact Sensory Support. They said they’d pass the message onto Hayley’s Teacher of the Deaf (ToD).

That same afternoon, I received a belligerent email from the Senco, stating that she was “puzzled that you were querying why I “refused” Hayley any access arrangements for the recent exams.”

She continued by telling me that “Hayley’s literacy skills are excellent and so she clearly does not need to have any help with these or her writing.”

For one, that was irrelevant – these skills were tested three years ago and ToD assessments since then have shown Hayley’s levels have dropped, as the lessons and language have become more advanced.

I responded, asking whether she’d considered Hayley’s deafness and her specific learning difficulties.

I said I didn’t recall mention of Hayley’s processing speed being tested – I’d read in the NDCS information that some deaf students need longer to process what they read and were allowed up to 25% extra time. The same went for pupils with specific learning difficulties, such as poor working memory – which the Senco had made no mention of, but which it is documented that Hayley has.

Then I got a call from Hayley’s ToD. She was very helpful, and asked me to leave it with her. She added that it would be preferable if I didn’t mention to the Senco that I’d spoken to her – it wouldn’t go down well as her duty was to report to the school, not the parent, and we wanted to get the best outcome.

Days later, Hayley told me the Senco tested her processing speed, then informed her that the results showed her processing was slow, and she’d therefore be allowed extra time in exams.

Hooray I think? I couldn’t be certain unless the Senco confirmed it, but I received nothing from her.

The summer came and went. Back at school I’ve emailed asking for an update. It turns out the Senco has left, and even though I’d copied in the new Senco, I got no response.

I re-sent the email exchange and finally I’ve received an email from the new Senco, saying that the ToD has provided a report that recommends specific access arrangements for examinations and tests for Hayley. “These include additional time and the provision of a quiet room. We have now added Hayley to the school’s Access Arrangements list to ensure she receives this entitlement from now on.”

Hallelujah!!

So we’re a little further forward, thanks to NDCS, as ever, Hayley’s ability to speak up for herself and my stubbornness. Hayley now has a better chance to get good grades in her GCSEs.

But the point is, if we hadn’t spoken up, she’d not have had as good a chance of success.

“Deaf children underachieve in GCSEs”

And what makes me mad is that Hayley’s not going to be the only one – deaf children already underachieve in GCSEs, with 63% of deaf children failing to get 5 A* to C GCSE grades including English and Maths.

The lesson once again is that your deaf child won’t get what support they need without fighting for it.