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.

Hayley’s new job!

15-year old moderately deaf Hayley, who has autistic spectrum disorder (ASD), is excited about her new job. But Tiger Mother’s surprised she hasn’t told everyone she’s deaf.

Hayley is excited. I know this because she hasn’t stopped talking, at speeds of up to 110mph, for the last five minutes since she barrelled through the front door. It’s like being in a room with a hyperactive chimp who’s just downed a dozen large espressos.

That’ll be the new job then. She’s just started helping out at a nursery for a few hours every Wednesday after school.

Hayley adores kids, and they seem to love her, so she’s in her element there.

One thing surprised me, though. She said that when some of her young charges were curious as to what her hearing aids were, she told them they were earrings.

When I asked her why, she just shrugged. “Just didn’t want to get into explaining it all to them,” was all she’d say.

“Hayley’s never seemed self-conscious about her hearing aids”

It’s unusual for Hayley, because she has never seemed self-conscious about her hearing aids or her deafness. She’s always been comfortable talking about it if anyone asks, and has no problem asking teachers to repeat themselves if she can’t hear.

Naturally, we’ve always encouraged her to be accepting of her aids, and the audiologists are brilliant. Whenever she needs new ones, it’s like they’ve all the time in the world as they let her choose from a whole range of moulds and aids, different colours, glittery ones, pearlised finishes, all sorts.

They hold open a display case of the whole range while madam sits there ‘umming’ and ‘ahhing’, trying to make up her mind like she’s choosing a ring at the jewellers. I’ve even had to model them on my ear before to help her decide, at the very accommodating audiologist’s suggestion.

Just recently, Hayley chose two swirled colours on her new mould, only possible, the audiologist told us, because they’re on good terms with their suppliers.

So Hayley’s always seemed pretty comfortable with it all.

“At 15 she’s become much more self-conscious”

I guess it’s her age that’s kicking in. At 15 she’s become much more self-conscious, especially about her appearance. It’s natural for a teenager.

So just like she’s overly conscious of her hair, makeup or clothes, I suppose there’s no reason to think her hearing aids would escape. After all, they’re part of her.

I suspect that, because the kids look up to her as a ‘teacher’– some call her ‘Miss’ which she thinks is very cool – she’s enjoying the sense of feeling like a proper grown up. She just doesn’t want to risk being seen as anything other
than an everyday, common or garden grown up in the children’s minds.

I’m certain that once she’s more secure in her role there and realises it won’t make any difference to her coveted status as a grown up, she’ll be happy to chat to them about it – at endless Hayley-style length!

Deaf teen in young chef contest

Five minutes to go in the young chef contest semi-finals, but Tiger Mother’s anxious that Hayley won’t get her food out on time…

The tension is high, the stress levels producing waves in the air so thick you could slice them with a knife.

It’s a cook-off in the district semi-final of a national young chef contest and Hayley is in a huge kitchen, competing against nine other under-16s.

They each have to cook a fancy three-course meal for two, in under two hours.

We nervy parents and supporters are waiting beside a partitioned-off area where there are dining tables laid by each contestant, ready for them to serve up the food to be judged by the top chefs currently watching their every move in the kitchen.

Five minutes to go. And, while the other tables are now laden with the other contestants’ offerings, Hayley’s place settings are entirely empty; the little vase containing a flower that she’s placed on her waits, expectantly, all alone.

I won’t panic. We are a very last-minute family, skilled in achieving small miracles within tenths of a second tolerance.

The clock’s second hand jerks closer to the deadline. Four minutes.

Then Hayley emerges through the kitchen doors, soup bowls held aloft and I can feel the heat from her flushed cheeks as she steams past and sets them on the table.

She’s looking stressed but cheerful.

Two minutes later and she’s out again – it’s the main course, yes!

And she’s back again in less than a minute, running, desserts in hand and finally on the table. I want to faint from relief!

Now we wait as the chefs taste, confer and make their final decisions.

The young chefs are summoned in, we all gather round to listen. Only four contestants are to go through to the next round.

Hayley is not one of them.

A couple of the others seemclose to tears, one particularly overly confident boy  looks like a deflated soufflé.

I don’t need to watch Hayley’s face. I know she will be a good loser.  She’s just pleased that she did her best and got the three courses out.

“Hayley loves to cook”

Hayley loves to cook. With her hearing loss, I think the attraction of cooking is that it’s something she can do  without having to rely on ongoing instructions or complicated team communication.

She’s an old hand at this competition, it’s the fourth year she’s entered and the second year she’s got through to the district semi-final.

And she has the confidence and determination to pull it off – as well as the maturity and experience to take losing on the chin and offer congratulations to the others.

“She struggles socially and doesn’t get support others do from close friendship groups”

It wasn’t always this way, but lots of things have helped. As she struggles socially and doesn’t get support others do from close friendship groups, I always encourage her to join in everything she can.

NDCS events, local NDCS group outings, Guides and Air Training Corps (ATC) have all played their part in boosting her self-esteem.

We’re lucky enough to live in a community where people are supportive. And where people who know her have heard of her reputation for enthusiasm, determination and the willingness to get stuck into whatever’s going on.

It’s really starting to mark her out, define her. She’s recently been asked to babysit, and to help out at a function doing waitressing, and she’s even been invited to spend a day with a chef at a top local restaurant.

“We’re doing all we can to broaden her experience”

While the academic side of things remains an uphill struggle, and always a battle to get her the support she needs, I feel we’re doing all we can to broaden her experience and bolster her chances of a good career in the food world, which is her ultimate ambition.

Hayley for Master Chef, yay!

Hayley misplaces one of her hearing aids

Hayley misplaces one of her hearing aids, and is mortified when mum tells her their lively, lovable pup’s found it and chewed it up!

Hayley is looking at me impatiently. “Well?” she demands.

She spots the dog yawning luxuriously, waking from an afternoon nap, and drops her school bag to rush over and cuddle her. Hayley adores the dog who adores her back, and for a moment I put off finishing what I’d started telling her.

pink-hearing-aid

Hayley mislaid one of her hearing aids yesterday and we agreed that while she checked her classrooms and school locker, I would hunt round the house for it. She’s very good at looking after them and she gets very upset when she thinks she’s lost one. If ever they are misplaced, it’s not for long; they usually turn up in a pocket or down the side of her bed.

At lunchtime I texted Hayley to tell her the missing hearing aid had turned up at home, so she could stop looking.

Now she wants it back.

“Well,” I say, cautiously. “The good news it’s been found… The bad news is, it was the dog that found it…”

Her mouth falls open as the penny drops. “Oh no, she hasn’t…?”

I nod slowly. The dog has of course eaten it. Well, given it a good chew before I could get it off her anyway.

She’s a large, curious and hungry five month old puppy who eats everything, including stones, house bricks and the back door. A hearing aid would be a mere morsel!

Hayley wails and a look of worry pins the dog’s ears back to their ‘guilty’ position.

But Hayley can’t stay mad at the dog for long, she’s her best friend.

Since we got her from a rescue shelter last summer, this pup’s proved to be worth her weight in gold when it comes to being a loyal and loving companion.

“With her mild ASD, Hayley finds it difficult to make close friends”

With her mild ASD, Hayley finds it difficult to make close friends. She spends a lot of time, when she’s not at one of her many sporting/Guiding/Air Cadets activities, at home with boring old us for company.

It’s been lovely to see her bond with our new family member, care for her, help to train her, the only one initially who could get her out in the rain for a toilet trip.

Right now Hayley’s worried that audiology will charge us for a new aid, but I tell her how nice they were on the phone when I told them the dog had eaten it (mortified shrieks from Hayley, ‘Mum you didn’t actually tell them that!’) and that they would arrange for a new one right away, with no charge incurred. Everyone in that department is really lovely; I know how lucky we are because not everyone has such a good experience with audiology services in different regions.

So all’s well. Except that Hayley’s younger brother Harry, who’s heard the news, is thrusting his maths exercise book under the dog’s nose and making chomping noises.

“If I could just get her to like it as much as she likes hearing aids,” he says. “Then I wouldn’t have to do my homework…”

My deaf teen’s brilliant work experience

Tiger Mother’s 15-year old moderately deaf daughter Hayley, who has autistic spectrum disorder (ASD), is getting more independent by the day – and now she’s got spending power!

Tra-la-la-la, ting-ting-ting – the tills of Christmas are ringing out merrily as I shove the groceries down the conveyor belt to my chief shopping assistant for her to pack.“No Mum, keep the chilled stuff together and leave the eggs till last!”

I do as I’m told. If there’s one thing Hayley loves, and excels at, it’s groceries shopping and bag packing. And today, as all around us the frenzy of seasonal panic buying is starting to fizz, Hayley can barely contain her own excitement.

SoundingOffTest

It’s not just the whole Christmas thing, which of course she loves. It’s her new secret weapon – spending power! When it’s time to pay up, Hayley whips out her supermarket gift voucher and hands it to the cashier. She’s earned it working on a youth work experience scheme where they pay wages in vouchers. And the deal she and I have struck is that each month when she gets her voucher, I pay her the cash equivalent.

It’s a brilliant local scheme. Hayley works two evenings a week at the village community centre where she helps on reception, prepares meeting rooms, does a bit of filing and loads the dishwasher. She loves it and better still, she’s evidently really good at it.

I recently took a phone call from Hayley’s boss, the centre manager. She tells me he’s very kind, asks her about her hearing aids and makes sure she hears and understands all the instructions.

“Is that Hayley’s mum?” he asked, and for the next five minutes he waxed lyrical about Hayley and how hard working and enthusiastic she is. He said he wished all his staff could be like her.

The rich and glowing praise was joy to my ears. I felt so proud of Hayley. And so glad for her. That girl puts her heart and soul into everything she does. It’s just rare that she gets it so right or gets the recognition. Her deafness and her ASD can prove a challenge, but she doesn’t let much stand in her way.

“Work is what Hayley’s been waiting for ever since she was little”

Work is what Hayley’s been waiting for ever since she was little. She’s never had much time or use for toys or games – she’s just wanted to copy the adults around her and do jobs.

When Hayley was six or seven and would help me with housework, she actually cried once when I told her that I’d washed the floor and not saved the job for her. I had to promise her she could clean the cupboards out instead by way of compensation. I swear this is true! I would set her chores like other mothers set up games and puzzles.

“It will stand her in good stead when she leaves school and starts applying for college and jobs”

Well now Hayley’s in her element. And hopefully it will stand her in good stead when she leaves school and starts applying for college and jobs. Anything that can help give her an advantage in a hearing world can only be a good thing.

In the meantime, she’s a girl on a mission – there are presents to be bought, and she’s loaded!

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.