Deaf awareness at Christmas

Day after Boxing Day, busy Christmas household

I knock gently on Hayley’s door and peer round to see her sitting up in bed, duvet pulled up to her chin, headphones on.

“Thanks Mum.” She smiles gratefully, taking the hot water bottle and paracetamol I give her.

She’s not ill, just suffering from a headache and taking some time out away from the madness.

If there’s one thing Hayley loves it’s Christmas. She’s very sociable, loves parties, adores her little nephew and young cousins and is addicted to chocolate – what’s not to love!

But over the years I’ve realised it’s not the easiest time for her, as deafness brings extra challenges when there’s so much going on and an onslaught of guests.

Christmas dinner

There’s the obvious increase in chaotic noise levels, with everyone chattering at once, making it hard for Hayley to follow. She often ends up with a headache from her hearing aids amplifying all the extra noise.

And many of the visitors are people we don’t see too often so they are not deaf aware, and this adds to stress and sense of exclusion for Hayley when she can’t easily join in.

One likely flashpoint is the dinner table. Mealtimes with a dozen or more people crowded round, all talking over the clatter and scraping of plates is a minefield for Hayley.

As well as the din she struggles to follow the pinball nature of the conversation ricocheting around the table, as well as not being easily able to lipread because she can’t see everyone’s face.

So she often misses bits or perhaps the main point. Someone – usually me, her dad or her brothers – will stop to explain to Hayley what she’s missed. It makes for an interrupted flow of conversation, which we’re used to, but visitors don’t always understand or show patience and consideration towards her.

Hayley often ends up feeling excluded, leaving her very frustrated and giving her self-esteem a bit of a hammering, even more so when she picks up on the exasperation of some guests.

We of course want to avoid these situations, but don’t want to make a big deal of it which would embarrass Hayley and make our visitors feel they’re being lectured, so it’s a tricky balance. We just tend to drop in deaf awareness tips casually and hope guests pick up on it and follow the example of the rest of us.

These seasonal gatherings of non-deaf aware visitors are also a prime time for over use of the ‘Oh it doesn’t matter’ response when Hayley says ‘pardon?’ It is a huge insult to someone who is deaf – the phrase is banned in our house – and likely to make her blood boil.

“If it’s important enough to bother saying to everyone else, then why aren’t I important enough to bother repeating it for me?” she quite rightly used to challenge her brothers.

They’ve grown up learning why it’s important and will repeat it to others who fall foul of the rule. Hopefully other guests catch on too.

One thing’s for sure, over the years things have got easier to deal with. We know that time out for a bit of peace and quiet is a good idea for keeping Hayley’s equilibrium.

And with Hayley and her brothers maturing, and perhaps deaf awareness messages getting through to the odd guest, the extra stresses and challenges of having a deaf child are definitely easing – shame I can’t say the same about the rest of Christmas!

Please note the image is not of Hayley.

The balance between school work and activities

Hayley’s looking forward to the Christmas holidays after a demanding term in her final school year, while Tiger Mother is encouraging her to cut back on out of school activities.

Saturday morning, elbow deep in revision diaries and the family calendar

Hayley’s counting down the days until the end of term, getting more excited with every little chocolate reindeer that falls out of the windows in her advent calendar. It’s an exciting time evidently, Christmas, even for a 16-year-old – long may it last, I say.

31167_fabric_tree_advent_calendar

It’s also been quite intense at school so she’s looking forward to the holidays. The fact is it’s her final year at school – I can’t believe I’m saying it! – and the pace is hotting up. Lots of hard work is required. And earlier this month they started their mocks, which was quite a shock for her as the realisation hit how much effort is needed to succeed in next year’s GCSEs.

“Hayley’s got to knuckle down this school year”

Hayley’s got to knuckle down this school year and that means dropping – albeit very reluctantly – some of the many and varied out of school activities she usually does. There’s been a fair bit of wrangling over exactly what she can still fit in without it affecting her school work.

I’ve always encouraged her to take part in everything going – Guides, sports clubs, air cadets, work. She struggles socially due to her deafness and social communication difficulties, and having structured activities to go to has really paid off; it’s done her a power of good in terms of confidence, self-esteem and just learning about the world and how to be in it. It’s also equipped her with experience that might help her get a job in the future. But now there’s got to be a compromise between fun/experience and nose to the grindstone studying.

“Leadership experience will help her personal self-development”

She dropped Guides – easy because she was too old at 16. Ditto the local youth enterprise scheme, which gave her four hours’ paid work a week. But she is looking for a Saturday job, doing tennis every Monday and still going to air cadets twice weekly, though that’s under review. And now she’s decided to try Explorers, the follow-on from Guides and Scouts, which involves doing one night a week plus an extra evening as a young leader for Cubs. I can see the value of it though, as well as the fun. Leadership experience will help her personal self-development and possibly boost her job chances in the future.

“She’s not strong academically”

It’s just trying to decide together how far to tip the balance. She’s not strong academically, so has to try harder to get the minimum grades. But there again…

Aaargh, I don’t know!

Hopefully she’ll soon see for herself she can’t do it all and drop some activities of her own accord, it’ll be better if it happens that way. And I can always remind her about the NDCS Young Leaders courses next summer, which have an accredited leadership certificate – GCSE exams will all be over bar the shouting by then, so she’ll be able to throw herself into it to her heart’s content.

Hayley’s deafness rules out a career as an RAF chef

It’s time to start thinking seriously about future options for Hayley and already plans have been upended, so now an alternative must be decided…

Wednesday afternoon, at a college open event

Hayley’s eyes are shining, a subtle wrestling match is taking place on her face as the corners of her mouth keep trying to push into a big grin, but she’s determined to play it cool.

We’re being shown around a catering college by a very professional and polished course tutor who is also a restaurateur at the upmarket restaurant operated by the students there as part of their training.

The tutor explains that they learn front of house skills, including flambéing and barista qualifications. Also, in the next academic year they are adding patisserie and confectionary skills to the course. This makes Hayley’s eyes light up even more, a child in a sweet shop!

Teacher Helping Students Training To Work In Catering

“Hayley has always loved cooking”

Hayley has always loved cooking, and has had some success in young chef contests. I think she enjoys it because having a hearing loss doesn’t matter – she can focus on the task assigned without constantly struggling to make sure she’s not missed out on anything.

I’m so pleased she’s thrilled about it because until a couple of weeks ago she had her heart set on other plans.

At a school careers fair last year, an RAF careers officer had said they were desperate for chefs and would take recruits at 16. After some square bashing she’d get catering training, gaining an NVQ, all on a wage most teenagers can only dream about.

With three years spent at Air Training Corps, which she’s loved and which has given her fantastic adventures, including flying a plane, target shooting and mountaineering, an RAF career seemed a natural progression.

They took her details and have called her a few times since last year to see if she’s still interested. So now she’s in Year 11, I suggested she call them to apply.

“Hearing loss ruled applicants out”

The next step, they said, was for her to check the eligibility criteria online. I logged onto the site and had a bit of a shock – it said a significant hearing loss ruled applicants out.

I phoned and asked what ‘significant’ meant, explained Hayley had a moderate loss and wore two hearing aids and his reply hit me like a stone. If the loss is enough to require hearing aids, the RAF can’t take her.

“It never occurred to me that deafness would be a problem”

How could I have been so naïve and not realised before now? I felt awful, having encouraged her to go for it, aim towards an RAF career. It never occurred to me that deafness would be a problem. Had she wanted to be a fighter pilot perhaps, but a chef?

Hayley was very disappointed but took it well, though she did ask about equality laws and I said I guess some employers such as the Forces are exempt from discrimination.

Onwards and upwards with a new plan. With Hayley’s boundless enthusiasm for life, I figured it was time to get her excited about college again. She’d first loved the idea when she found herself in those very kitchens two years ago taking part in a competition cook-off.

And by the time we’d finished our tour on the open evening, Hayley was sold. She’s going to get her application form in, hopefully be interviewed by Christmas and will know if she’s been offered a place by January.

All very exciting and fingers crossed it will focus her on working hard in her last school year in order to achieve the necessary grades.

Should Hayley say she’s deaf on a job application form?

Lots of changes are becoming apparent now Hayley’s turned 16 and as she starts looking for part time work, her deafness raises certain issues…

Friday evening, in a pizza restaurant

“Come on Mum, a bit more than that!”

Hayley clinks her wine glass against the pinot grigio bottle from which I’ve just poured her, meanly she would say, a shot-size serving.

“I am 16 now and I’m allowed to have alcohol.”

Yes, our little Hayley has turned 16. The sparklers have barely fizzled out on her birthday cake and already big changes are afoot.

I’m sure she looks a tiny bit taller, her make-up that bit more sophisticated, a little more time spent on her hair with the straighteners each morning – and that’s just for school. Her skirt’s folded over at the waistband an extra turn, revealing more knee than ever, in strict contravention of school rules.

She’s certainly that bit more determined – which is saying something! – and alcohol consumption aside, now she’s set on finding herself a Saturday job.

For two years she’s been on a local youth enterprise scheme, with work placements in local shops and cafes where she gets paid in vouchers. But she’s no longer eligible as she’s 16 so she wants to get a proper job.

I’ve been helping her fill in an online application for a local branch of a national restaurant chain and it’s brought up a new area for debate.
Blue apply now button
Where the form asked if there’s any disability, I found myself going against everything we’ve done before, with school or club applications.

“Don’t tick the box,” I told her.

It felt awkward, duplicitous and with connotations of shame or embarrassment – like it’s saying to Hayley there’s something she has to hide or lie about.

Which is the opposite of everything I’ve instilled into her: to be upfront about her deafness, to feel comfortable with it, that it’s up to the world to accept it and try to support her to be included.

“But Mum, why?” she asked. “What about equality and discrimination?”

She knows, because I’ve told her, that it’s illegal to discriminate against you if you are deaf.

“Disability is an unknown quantity that might pose extra problems or effort or opportunities for embarrassment”

But that’s not the way the real world works.  I know human nature, have worked in positions where job applications are being screened; been part of the decision making process as to who gets called in for interview. I’ve seen others panicking, not knowing what difficulties disabilities could pose, covertly ruling out certain applications, not because they are nasty but because disability is an unknown quantity that might pose extra problems or effort or opportunities for embarrassment.

“Just get in your foot in the door first,” I tell her, let them see how capable you are, that it’s possible for you to communicate perfectly well, then bring it up.

I honestly don’t know if it’s the right thing to say. But for now while she’s starting out instinct tells me that right or wrong, a pragmatic approach – stealth approach if you like – is more to her advantage, and as far as I’m concerned, she’s going to need all the advantages she can get in an unequal world where she is so often at a disadvantage.

What are your views on whether Hayley should declare she has a disability or not? Leave a comment!

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 special bond with animals

Hayley’s been at Guides’ camp for a week, and the family dog has missed her greatly. Tiger Mother talks about Hayley’s special bond with animals, perhaps due to her deafness and communication problems.

Saturday afternoon, in the garden…

I’m standing outside the back door, trying to restore order and call the dog to heel, but I’m failing, partly due to being hysterical with laughter.

There is a canine streak flashing round the lawn, burrowing through baskets of dry washing, leaping over garden chairs, overturning flower pots and bounding up onto the trampoline. If only she had her own mobile I’m certain she’d be doing backflips and taking selfies.

Each round of the garden that the dog makes is punctuated by a spring-loaded leap up at Hayley, covering her in a slobber of doggy kisses, before galloping off for another victory lap.

dog

Up until five minutes ago, all was calm. Hayley’s been away at Guides’ camp for a week and the house has echoed with the sound of, if not silence, then low volume anyway. The telly’s been on quietly, music in the kitchen at a level where you can still hear a jet immediately overhead. And no shouting matches with her brothers.

“The dog has missed her terribly”

The dog has missed her terribly – sulked, taken up watch by the front door and refused to eat her dinners, the ultimate sign of devotion as she’s a very foodie dog.

Now Hayley is home. She calls sternly for a ‘down’ and the dog drops like a stone at her young mistress’s feet, looking up at her with love and devotion. Now that’s how it’s done.

Hayley has a way with the dog that shows the closeness between them. It’s great to see, especially when things are not going well with her at school, or when she’s fallen out with her friends. The dog is like her best mate. Sometimes she is her best mate.

Hayley loves all animals, does really well horse riding, and seems to have an affinity with every creature that she meets, even a tortoise that we adopted for a week recently.

“She really is in her element with animals”

She really is in her element with animals and I do wonder if part of the reason is down to her deafness and problems with communication. The constant struggle Hayley has trying to hear conversation, to keep up with the lightning flow of chat between her peers and others. And the difficulty she has trying to get her words out, often left behind as the conversation moves swiftly on.

All incredibly frustrating and we at home often feel the backlash, when she unleashes it on us in the safety of her own home after a long, tiring, wind-up of a day.

But with animals, we’re all in the same boat. None of us can speak their language, so we have to set up a form of communication between them and us that can work. Some of it is spoken, some is signed – as in hand cues for a dog, riding aids such as leg contact and reins contact with the mouth for a horse.

All perfectly logical, one to one, and for once on a level playing field for Hayley. No missed consonants or having to constantly say ‘pardon?’ or be told it doesn’t matter.

In seconds, Hayley’s taken her eye off the dog and been floored by a hairy heap. It’s hilarious to see so much love and devotion in action – and even occasional obedience…

Why is Hayley’s friend upset with her?

Hayley’s having a tough time understanding why one of her friends is upset with her, and Tiger Mother’s desperately trying to help resolve the situation.

“I’m not going to school! If you try and make me I’ll…”

The next few words are lost on me as Hayley’s voice is muffled by the duvet which she’s yanked up over her head.

Things have gone wrong again. I feel the old familiar heart-sink as I cast around my brain for problem solving ideas and encouraging words.

“Hayley has struggled socially ever since the start of junior school”

Hayley has struggled socially ever since the start of junior school, the age when children become razor sharp when it comes to noticing if someone is not exactly in tune with the rest of them.

For a long time, she had a very dysfunctional and often spiteful group of girls she called her friends. So many days she’d come home in tears, beating herself up over how yet again she’d somehow managed to upset one of them. It was honestly like watching someone you love trapped in a bad marriage with no idea of how to get out of it because there seemed no alternative. ‘I know they think I’m bottom of the group but it’s better than not having anyone,’ Hayley sobbed in one insightful outburst at home.

Thankfully she finally managed to wean herself away from them and in Year 10 settled in with a small group of friendly girls. Since then she’s been a different girl; it’s been such joy to see her happy.

Until now. The first I heard of it was a text from Hayley yesterday saying something happened at school and urging me to text back quickly to tell her what to do.

She explained that her friend keeps walking away while Hayley’s talking to her, which finally got Hayley so frustrated that she told her not to keep doing it.

Image

Now her friend is refusing to talk to her and has deleted Hayley from her social media networks. I can’t get to the bottom of it, despite Hayley going over and over it.

“Hayley does struggle to get her words out”

Hayley does struggle to get her words out, often. We have to try to find the patience of at least 10 saints to wait while she struggles for the right words, forgets her train of thought, supplies endless unnecessary detail and goes around the houses to get her point across.

It’s very frustrating all round, not least of course for Hayley. None of it helps her self-esteem or her social standing.

It’s long been a problem, something to do with processing skills, word retrieval issues, and her undiagnosed deafness early on when all the neural pathways are being forged by sounds and when the linguistic filing system of the brain is being formed.

Gradually though, Hayley has improved, learning to be aware of the listener’s needs rather than just desperately focusing on making herself understood. I think maturity is the answer; things will continue to improve.

But in the meantime, there’s this current mess to sort out.

I coax her out from under the duvet with the promise of scrambled eggs and a reminder that her beloved faithful hound is waiting downstairs.

“Explain you don’t know why you’ve upset her and you didn’t mean to”

It gives me a few minutes to try to form a strategy. ‘Go up to her and apologise, explain you don’t know why you’ve upset her and you didn’t mean to,’ I say.

‘Done that, she walked away,’ says Hayley, miserable. This had been on the advice of her younger brother Harry, whose counsel she’d actually sought at break time.

‘Okay, well give her some space,’ I tell her, ‘and meanwhile, arrange to do something nice at the weekend with one of the others.’

Hopefully by Monday, things will have blown over. If not, then at least she’ll have had a nice weekend, and strengthening up alternative friendships is no bad thing.

I find myself crossing my fingers and desperately wishing I had a magic wand…