Support Chelsea's Ears and win loads of cool stuff too ..

Local deaf child, Chelsea, was born 15-weeks prematurely and spent the first four-months of her life in intensive care. She's had heart surgery, takes loads of medicines and had two cochlear implants. 

Her Dad, Stephen Compton-Cook, has launched an appeal to buy waterproof cochlear implant processors to enable Chelsea to hear in wet conditions. 

"This type of aid would enhance Chelsea's life immensely enabling her to be able to go swimming, take a bath or shower and still be able to hear. She could play with water toys in the garden and join in with the other children instead of watching from the sidelines." said Stephen. 

The water-proof processors are called 'Neptune' and cost over £8,000 each. So in a bid to raise the money, Stephen has launched a giving website and is holding a fundraising auction at Wisbech FC on 28th July. Here's what you could win:

• 1 weeks accommodation for 2 in the Isle of Scilly 

• Lotus F1 factory tour, 

• X box 360 

• Top to Toe day voucher

• Peterborough United Football  match tickets 

• Round of golf for 4 

• Chauffer driven classic Bentley ride

• 1 nights stay for 2 bed and breakfast at the Four Star Belfry Q Hotel in Cambridge, 

• 2 British Superbike tickets for Cadwell Park 

• and lots more too..

The Auction starts at 1:30pm and there is lots more to do on the day including cake stalls and a bouncy castle. Admission is 50p per adults with children free. It looks like being a great day! 

If you feel inspired you could donate direct at the giving website. 

PDDCS wish Chelsea and her family the best of luck with their appeal. We're behind you all the way. 

Hollyoaks cochlear implant story line develops

Popular Channel 4 soap Hollyoaks is exploring the decision many parents of deaf children face when confronted with the news that their child is profoundly deaf. As we reported in December, main characters Darren and Nancy are dealing with the news that their son, Oscar, has been diagnosed as profoundly deaf. 

Since then, baby Oscar has been referred to a consultant with a view to giving him a cochlear implant. Nancy, believing that cochlear implants would restore natural hearing, was dismayed when the consultant revealed the limitations of cochlear implant technology.

It has to be said that, maybe in the interests of the developing conflict between Nancy and Darren in storyline, the consultant delivered what could be described as a harsh appraisal of the potential benefits of an implant over the risks. Nevertheless, the issues presented by cochlear implantation are being explored on mainstream TV. Check the latest episode here.

You can read more about cochlear implants here and in our anonymous 'One Mother's Diary' series which expolores the very same choices both at a young age and at teenage.

One Mother's Diary: Watermelon

Our popular series of anonymous diaries of a mother of a deaf child sees Calum and his mother in hospital the night before the cochlear implant operation. The clock is ticking away towards the biggest day of their lives so far.

Watermelon
Sunday 27th January 2013 
I can hear Calum tossing and turning in the bed next to me. After a while I turn on the light between the two beds and sign, ‘Are you alright?’

‘I am a little bit nervous.’

As we have been asked to be on the ward at seven in the morning for Calum’s operation we have travelled down to Cambridge the night before and are staying in a room on the biomedical campus. Calum has also informed me that ‘under no circumstances’ does he want his mum sleeping beside him on the ward the night following his surgery. I can take a hint. Tomorrow night I will retreat to this room again whilst he stays on the ward.

Whether either of us will get any sleep, tonight or tomorrow night, remains to be seen. Up until this point I have been the one unable to sleep at night worrying about the consequences of the operation and whether Calum will later come to regret it. He, on the other hand, has always seemed remarkably insouciant. Now, here at last, I feel oddly calm. It’s done, the decision is made and I am feeling strangely relaxed. Not so Calum:

‘Will it hurt?’

I look across at him. I can’t lie: there will inevitably be discomfort. It’s not as though he is going into surgery ill and in pain. Calum is perfectly healthy. But I have to reassure him:

‘You remember me telling you about when I was in that accident in Oxford? ‘

He nods his head.

‘I was in pain when I was wheeled into the theatre but pain free when I came round.’

It’s not quite the same, though, is it? Calum will be going in pain free. But he’s already changed the subject;

‘Why do they call it a theatre?’

I grope around for an explanation:

‘Well, you know the old Roman and Greek amphitheatres with the tiered seating for spectators? I think in the first operations (I try not to think of a surgeon sawing through a limb before the invention of anaesthesia) students used to sit on the seating…’

He’s looking tired.

‘And look down at what was going on below.’

‘Turn the light off please.’

Oh, why did I have to conjure that image up? Now I’m feeling anxious again. Calum, on the other hand, seems to be settling down to sleep.

I jump – someone is banging on the door: I sit bolt upright. No: it’s a door banging somewhere. Just as I am finally drifting off the noise comes again – four loud thumps in quick succession. Great – it’s a boiler – and it appears to be housed in the cupboard adjoining our room. In the quiet moments between the booming I can hear the gentle, regular breathing of Calum. He is fast asleep now. I certainly won’t be, however, if that noise keeps up. One good thing about being deaf: you have undisturbed sleep. One bad thing about being deaf: you don’t hear the fire alarm.

How did we get here? The past few months have passed so quickly. Having Christmas and New Year in between our last hospital appointment and now did not make the passing of time any less frantic. And then, only last week someone remarked, ‘Ah! So it’s only a week until the operation?’ And I had replied, ‘No, it’s weeks away!’ But it wasn’t.

Where did the time go? I think back to our last appointment just before the schools broke up for the Christmas holidays. Calum’s assessment had been completed and we were to hear the implant team’s decision. We arrived ten minutes early and, much to our surprise, were called in ten minutes early. So, even before our designated appointment time, we knew their decision: it was agreed that Calum would benefit from implants. I remember seeing the beaming smile on his face and then hearing proposed dates for the procedure: early January. What? So soon… But Calum had GCSE exams in the first half of January so the 28th was suggested. And now here we are.

The rapid thumping noise from the boiler comes through the wall again. Now I am wide awake and see the events of the past six months laid out as though placed, at intervals, along the winding yellow brick road from the Wizard of Oz: Calum announcing his decision he wanted to be assessed for an implant, me requesting an assessment appointment but assuming we’d be knocked back and Calum, from seemingly out of nowhere, suddenly trying to vocalise words; something he had never done or been able to do before.

Watermelon: I am remembering a late November evening when I walked into Calum’s room to tell him that I was going to prepare some fruit and would he like apple and banana or orange and apple? All our conversation is through sign language but Calum turned to me and without removing his fingers from his computer keyboard said,

‘Watermelon.’

I stop in my tracks. Watermelon, did he just say watermelon? I know we have been downloading diagrams from the internet of where the tongue and soft and hard palates are positioned to make different speech sounds but to say this…

‘Did you just say watermelon?’ I sign.

He nods and says it again, ‘Watermelon.’

‘You want watermelon?’

‘Yes’, Calum signs, ‘It’s my favourite fruit!’

This is news to me but, not to be outdone, I pull on my jacket, push my feet into my boots and grab my car keys. If Calum has made the effort to practice how to say watermelon when he can’t even hear what he is saying then I am going out to find him one. I drive to the Co-op. I know this is probably a hopeless quest as their most exotic fruit usually consists of shrivelled pomegranates but I can’t face the bright lights of Tesco without a certain level of armour plating. I can’t believe it: the Co-op doesn’t just have one watermelon they have a whole shelf full and they look quite luscious with a deep green sheen. Watermelons! In November! It’s no easy feat picking up a watermelon with just one arm but somehow I manage to manhandle a specimen into a shopping trolley and then into my car boot. Back home I brandish a large carving knife above it wondering which Catholic saint to pray to for assistance. (When I’ve lost something it’s Saint Anthony, when I can’t find my glasses it’s Saint Lucy). I decide there probably isn’t a patron saint of watermelons (although there probably is one for knives), shut my eyes and slice downwards. Nothing falls on the floor. I open my eyes; a near perfect third wobbles on the bread board. I make short work of the chunk carving it into delectable pink wedges leaving a faint fingernail white edging where I have chopped away the green skin. I arrange it on a plate and rush up to Calum’s room.

‘Ta da!’ I launch myself into the room brandishing Calum’s reward.

I place the watermelon beside the computer key board. The smile drops from his face.

‘But I thought watermelon was your favourite fruit!’ I sign indignantly.

He looks up and his sheepish expression says it all: watermelon isn’t his favourite fruit. Calum thought if he named a fruit that we didn’t have he wouldn’t have to have any fruit at all. Slowly he takes a piece and, with resignation, begins to chew.

Other memories: Calum having his hair cut. Calum had grown his hair long at the end of primary school and lately had been attempting to grow it long again. But, given that he would have to have small sections shaved behind his ears in readiness for the operation and knowing that he would not be able to wash it for two weeks following the operation he had reluctantly agreed to have it cut.

The boiler next door is thumping against our wall again. I run my hand through my own chopped hair. Two weeks following Calum’s visit to the barber I shear through my own hair with an old pair of dressmaking scissors. Oddly, my husband doesn’t seem to notice my sudden change in appearance but Calum does, immediately.

‘What have you done? Why have you done that?’

‘Well, you had your hair cut.’

‘But yours looks a bit,’ he’s thinking of how to put it politely, ‘odd.’

Why did I do it? ‘Well, if I’m going to grow my grey out you can’t do that with long hair,’ I explain.

The real explanation is more complex: It’s a reaction to feeling out of control. We are on a runaway train and I don’t know where we are going or even who’s driving. In some strange way, cutting my own hair off has brought a sense of relief. It’s gone; I feel lighter.

‘When will it look nice again?’ Calum asks.

‘I don’t know.’

Another time he asks,

‘How long will it take me to learn how to speak?’

‘I don’t know. You will have to learn how to listen first.’

‘How long will that take?’

‘I don’t know.’

How long, how long? Nobody knows.

It is now half past three in the morning and the boiler is still thumping. Somehow I manage to fall into a deep sleep and there in the distance is a large, green watermelon rolling slowly, yet relentlessly, toward me. As it rolls it thumps across the wooden floor; thud, thud, thud. It’s far larger than a normal watermelon: it’s as tall as a bus. It’s only a few feet away from me. Alarm bells start to ring everywhere; wild, clanging alarm bells. In shock I awake. My alarm clock is ringing.

6:00 - Monday 28th January.

Catch the next instalment only on PDDCS News. Read the other fascinating entries here

Keir's tribute to his deaf brother

Keir Daly is a musician and the brother of one of our members, Calum Daly, who will be having surgery for a cochlear implant this week. Today, Keir has released a song on the internet that he wrote about his brother in 2010. You can hear it below (it also has subtitles). Calum also has his own blog and has featured previously on PDDCS News making films and signed song music videos. What a creative set of lads!

Keir wrote this on Facebook about his brother and the special significance of the song.

"One of the first songs I ever recorded was "Song for Calum" (on my first album, "Twenty-First Century Man", 2010). It was for my younger brother Calum, who was born profoundly deaf and has been a British Sign Language user all his life. I always found it ironic that he could never hear my music.

I have to admit that the original recording has always annoyed me because my "Ooohs" had a flattened second instead of a natural fifth note. However, the song has a special significance for me today, because in a few hours Calum is going in to Addenbrooke's Hospital in Cambridge to have surgery to have cochlear implants (the surgery is early tomorrow morning UK time).

I am many miles away from my brother right now, so I decided to re-record the song to let him know that I am thinking about him and hoping for success with his surgery. Who knows? The great thing may be that he can hear this song once he has recovered from the operation. I hope so, and I think he is very courageous to have made this choice. So, Calum, as the song says - this one's for you.

One Mother's Diary: The Girl in the Dunce's Hat

The latest in our series of captivating entries from our anonymous diarist, we delve into the past to find answers to today's problems as Calum's implant date draws closer.

The Girl in the Dunce's Hat

What does a small girl, made to sit at the back of the class in 1932 with a dunce’s hat on her head, have to do with a fourteen year old boy requesting a cochlear implant assessment in 2012?

It’s our second implant assessment visit to the hospital and the audiologist is talking about the possible causes of Calum’s deafness.  We were asked this question on our first visit by the consultant and then, as now, I say that I believe it to be genetic but that we never completed any genetic testing.  Thirteen years ago Calum’s father and I had attended an initial meeting with a geneticist but then, shortly afterwards, had separated and, and had not pursued the testing.  I feel perfectly happy with the idea that there probably is inherited deafness in our family but less comfortable with the idea of genetic counselling or testing.  If I am truthful, I remain wary of the supposed benefit of the research into genetic deafness.  I know something about the arguments for research benefitting treatments for deaf people but what if the research were one day used as a pregnancy screening test, for example?  And any talk of genetic deafness always reminds me of my mother and of what she endured at school through her childhood.  I am aware that she had difficulty hearing the teacher and that she had endless appointments with the school nurse who would syringe her ears, and on some occasions, even her nose.  My mother grew to fear these sessions.

‘The teachers used to make me wear the hat and sit right at the back of the classroom but I wasn’t stupid, Jill, I wasn’t a dunce.’  She says the word ‘dunce’ with emphasis, her eyes reddening slightly. I think she’s going to cry but it’s me who gropes in my pocket for a tissue.

‘You’ve never told me this before.’ 

My mother doesn’t reply.  She is remembering.

‘Sit there, Joyce, and you can stay there until you are less of a dunce.’

My mother is now 87 and resides in a care home not far from Calum’s school.  Although her short term memory is problematic her long term memory seems to be growing clearer day by day. I visit her several times a week; we often talk about ‘the old days’ but this is the first time she has told me about the dunce hat.  I’d been explaining to her that Calum would like to have cochlear implants in the hope that he can hear more.  

I’m familiar with my mother’s childhood reminiscences: chilblains in the winter, hop-picking in the summer, a drunken father lashing out, but never this before; never this lonely image of a little girl made to sit at the back of the class.

‘You weren’t stupid.’  I try to comfort her.  ‘And with you sitting at the back of the class you were even less likely to hear what the teacher was saying.’ 

It was only with Calum’s diagnosis that the jigsaw pieces finally came together: my mother’s painful school days, my father describing my mother as a ‘dumb blonde’ and ‘always coming out with some daft non-sequitur’.  Another jig-saw piece comes to mind: everyone laughing at me in the barber’s.  In order to economise my father had my hair cut along with my brothers’ at the barber’s.

‘Do you like a parting?’  The jolly-faced barber asks.

‘Ooh, yes!’  I reply.  ‘And I like the cakes and jelly and pass the parcel!’

Through the fog of cigarette smoke everyone is snorting with laughter.

‘A parting!  Not a bloody party!’  Someone shouts

Another jigsaw piece: One day, a lady with a large suitcase visits our school.  It isn’t Nitty Nora or the friendly dentist people who tell us we shouldn’t all share the same toothbrush at home and present us all with lollipops before departing. No - this lady had come to test our hearing.  A few weeks later at breakfast my father rips open a letter and shouts at the toaster;

‘Our daughter is not bloody deaf!’

There were a lot of ‘bloodys’ in my childhood.  I’m dragged off to the doctor.

‘Their bloody robots say she’s bloody deaf!’

The doctor asks me to sit on his knee (this was 1965). From his waistcoat pocket he extracts a large, silver fob watch.  He holds it to my ear:

‘Can you hear that?’

The watch makes a very loud tocking noise.

‘Yes!’

‘Your daughter is not deaf,’ the doctor pronounces in a measured ‘doctorly’ manner.

I console myself with the fact that my father is smiling and that I am not ‘bloody deaf’.

My mother’s hearing loss deteriorated as time went by and she became profoundly deaf in her early 50s.  A few months after Calum’s diagnosis of a profound hearing loss I had my own hearing tested.  I have a moderate loss bordering on severe in the lower frequencies. 

‘So you’ve never had genetic testing?’  I am asked

‘No,’ I reply.

‘Well, if you’d like to pursue it you can ask your GP to refer you.’

‘Oh, that’s certainly something to consider.’  I reply

The interpreter is translating the conversation to Calum.  I look across at his absorbed face knowing he has been studying genetics as part of his biology course in school.

In the care home I tell my mother, ‘You know mum – that wouldn’t happen in schools today.  You would sit at the front of the class.  You wouldn’t be called a dunce; you would be helped and given support.’  She doesn’t look convinced. 

‘What will they do in the operation?’  She asks me. 

Her face looks so innocent and childlike I can almost see her sitting at the back of that infamous classroom.  I hesitate before describing to her what happens in an implant operation but her face relaxes into a smile,

‘It’s a big operation to go through but I can understand why he would want to hear more.  Would you like a Pringle?’  She snaps the top off of the tube of potato snacks I have brought with me.  ‘And could you bring me some salted peanuts next time?’

My mother is returning to childhood tastes of crisps and sweeties and I worry that my talk of Calum’s assessment is unwittingly evoking painful memories long since hidden away.   I feel angry with the teachers and nurses who made school a place my mother both hated and feared.  But it is a powerless anger. 

‘You do know that Calum is happy in his school, don’t you?’

 Calum is being asked a question.  The interpreter translates; ‘Why do you want to have cochlear implants?’

Calum signs: ‘So that I can hear higher frequencies and learn how to speak.’

Oh dear: this will not be what they want to hear.  We already know that speech outcomes for children who are implanted at a later age are not terribly promising.  But the interpreter is saying something different:

‘So that I can hear higher frequencies and learn how to lip-read.’

Calum is immediately congratulated on having such ‘reasonable expectations’.  Everyone is smiling.  The interpreter signs to Calum that everyone is happy that his expectations are so reasonable.  Calum beams.  Do I interrupt?  No; instead of pointing out the mistranslation I join in with the general smiling.  Who am I to rain on Calum’s parade?  This isn’t the moment.

Later, in the hospital dining concourse I explain the slip-up to Calum.  He understands immediately.  He puts down his chicken nugget and lets the information slowly sink in.  Gently he touches two fingers to his throat:

‘I’m disappointed.’  He signs simply.

I know why he wants implants: he wants to speak.

I try to explain that everyone is different and that for every child and teenager implanted there will be a different outcome but, I add, the older you are the more difficult it becomes to acquire speech. 

I can only imagine what is going through his mind.  He slowly dips a chip into one of the four pots of ketchup he has lined up in front of him.  I touch his hand, he looks up and I sign:

‘But, hey!  You are so hard working and determined and I know that you will try very hard to learn to listen to the new sounds.’

‘And I will practise every day and you will help me won’t you?’  His face is brightening.

‘Of course I will!  An hour every day?’

‘Maybe more!’ He signs.  He tucks into his dinner with renewed relish.

As we drive back in the darkness on the A14 I make a mental note that I must let Calum’s key worker and audiologist know about the mistranslation – a minor slip-up which anyone could make but which changes the meaning of his reply quite profoundly. 

And then before me again is the monochrome image of the little East End girl made to sit at the back of the class.  My mother was not born profoundly deaf like Calum, she has always had speech, but reactions to her hearing loss, and the lack of support blighted her whole school career and, I realise now, have haunted her ever since.  

I don’t think I’ll be investigating genetic counselling or testing any time soon. 

I think of Calum and of his older brother.  I remember a picnic we had many summers ago.  I am signing to Calum and then I turn and sign to his older brother.

‘Why are you signing to me?  I’m not deaf!’

‘Well, Calum is and it’s not fair if he can’t understand what I’m saying to you.’

His brother is still scowling.

‘And, it’s easier to learn languages when you are young.  Who knows – you might have a deaf child of your own when you’re older!’

I say it without thinking.

‘Ooh!’  A big smile crosses his face and he turns to face his little brother.

‘You want?’  He signs, holding out the tube of potato snacks.

Calum nods and helps himself to a Pringle.

See all the diary entries here:

One Mother's Diary: Third time lucky

The latest in our popular serialisation of One Mother's Diary. From the pages and the heart of a mother in the process of reviewing the past and planning the future with her deaf son.  

Third time lucky

We are on the highway to hell otherwise known as the A14.  Although our first assessment appointment in Cambridge is not until 11.30 am I have picked Calum up earlier than necessary from his school as I am sure we will encounter one of the many traffic delays for which this dual carriageway is famous.  Yesterday it had been a lorry shedding its load of paving slabs, the day before a container load of used batteries.  Soon enough we slow down and within ten minutes we have come to a standstill.

‘Why don’t you sound your horn and overtake?’ 

The mental image of our Ford Focus storming down the central reservation curling the metal barrier in its wake like the lid of an opened can flashes before me.

‘No one can overtake.  We all have to wait.  There has probably been an accident.’   I tune in to the local radio station and soon enough I hear the news of a collision involving two heavy goods vehicles.  I relate the information to Calum.
‘Oh – why do they do that?’  He signs in frustration. 

I look at him.  It is highly unlikely that two lorry drivers woke up this morning and decided it was a good day for colliding on the A14.  But Calum is impatient.  He wants to be implanted, he wants to hear more and the sooner we get to Addenbrooke’s hospital the closer he gets to his goal.  I, on the other hand, would rather this journey never ended.  This is not the first time I will be discussing an implant with a consultant, not even the second: it is the third.  Calum looks up from his iPad; the traffic is still stationary.  Turning towards me he signs, 

‘Do you think they will say yes?’

Calum has already told me that he is perfectly happy with not having been implanted as an infant but I still feel a lingering guilt.  Times have changed; we are in a recession now.  Surely a health authority would be perfectly within their rights to tell me that, since I had previously refused the offer of an implant, and since the outcomes are far less positive for older children, they were choosing not to proceed?
‘I really don’t know what they will decide.  This is just our first meeting – there will be four more.  It’s not just the hospital who must reach a decision – it’s you too.’

‘I already know!’  Calum smiles as he replies. ‘I want one!’

I have never forgotten our first encounter with an implant consultant. Calum was not yet a year old.  The week prior to the appointment Calum had undergone an auditory brainstem response (ABR) test.   During the ABR test I had sat holding a sleeping Calum in a sound proofed cubicle.  Only having one arm, and as it was important for Calum to stay as still as possible Calum’s father and I had held him together. Various wires and electrodes had been attached Calum’s head and we were trying to hold him in such a way so as not to dislodge any.  The cubicle door opened and in popped the technician’s serious, bespectacled face. Had any of the electrodes had fallen off?  We checked – no, they hadn’t.  The door closed.  Ten minutes later the technician’s face appeared again - were we sure that none of the wires had become dislodged?  This time he entered and checked himself to ensure that all wires were still attached by their delicate suckers.  He made no eye contact as, once again, he closed the door.  I knew what this meant: the technician was getting no response.  Finally, the test was over.  We came out and waited.   Still making no eye contact the technician informed us that we would be told the results of the test the following week at our appointment with the consultant.

‘Oh, we already know our son is profoundly deaf,’ I suddenly found myself saying. (What possessed me?).  ‘This test was just a formality, a procedure we had to go through to enable us to have the appointment with the consultant.’  My husband was staring at me.

An almost suppressed snort came from the technician,   ‘Oh ho, aha, in that case…’ he cleared his throat.  ‘There’s nothing there, nothing there at all.  It all points to a diagnosis of profound deafness.’  He removed his glasses and then replaced them as though to emphasise his point.

‘Well,’ I replied, stunned, ‘thank you for doing the test.’

Calum’s father looked as though he were about to faint or vomit or both.  We walked in silence through the hospital corridors.  Outside in the car park I turned to my husband and said, ‘Well – someone’s got to teach me sign language now!’  I was referring to an episode several years earlier when I had worked as a disability equality officer for a Local Authority.  I had tried to enrol on a level one course in British Sign Language, only to be informed by the tutor that one-armed people couldn’t learn sign language.  Head down, Calum’s father merely said, ‘Can we get home?’

In the intervening week between the ABR test and the appointment with the consultant I had succeeded in enrolling my husband and I onto a fast-track level One BSL course due to start in just a few weeks’ time.  I had also had discussions with the secretary of the local Deaf club and various college sign language course administrators who were all gratifyingly shocked that I had been denied entry to a course years earlier because of my disability.  I had also scoured all the city bookshops (both new and second hand) for books on deafness and sign language and had even more books and videos on order. 

So, here we were, a week later in the consultant’s office.  After allowing a suitable interval for all four of us to get seated and settled (Calum’s older brother who was three was also with us) the consultant cleared his throat.  Drawing in his breath, like an actor about to make a speech, he leaned forward slightly and said, ‘I am very, very sorry but I have some very sad news for you.’

I was hating him already.

Again, he seemed to pause.

‘I am afraid that Calum is deaf,’ he said sombrely.  Then, sitting back in the chair, he announced in a sprightly manner, ‘But – I can cure him!’

‘What?’  I was on to him now, he was no longer a medic or a man: he was the red rag and I was the bull.

‘I’m afraid your son is deaf.’

‘Not that bit!’ I shouted, ‘The other bit – the bit about a cure!’

‘Well, I can…’

‘You can’t!  You’re talking about a cochlear implant, aren’t you?’

‘Well, yes, but…’ 

Calum’s father had picked Calum up with one hand and with the other was pulling his brother out of the consultant’s room.

‘And why do you have to present it like it’s something really tragic?’

The argument didn’t go on for long but it ended with both of us shouting and the refrain, ‘You are an irresponsible mother!’ echoing down a hospital corridor.

I jump.  The car behind is hooting us; the traffic has started moving again.  Calum signs, ‘Will we be late?’  I shake my head.   We are heading for Trumpington Park and Ride, or the Trump and Ride as we call it.  I’m assuming it will be easier and less stressful for me to use this facility than try and do battle with a multi-storey car park exit barrier without the aid of a right arm.  I’m trying to stay calm.  I’m not succeeding.

I am now remembering the second time I met with an implant consultant.  Calum was older; he was five.  We had moved to a different part of the country and Calum was attending a school placement where they supposedly practised Total Communication.  I was now a single parent working on a daily basis during school hours.  I enjoyed my new life of having a job to go to; I felt like a real person in my own right again.  I employed a cleaner, had conversations with adults, and sometimes even wore shoes with heels.  I was fast realising that it was easier being a working disabled mother than a disabled mother who stays at home and does everything herself.  I had the best of both worlds; children and a job. What could possibly go wrong? 

For a few months now I had noticed that Calum, usually a very cheerful child, had started to become more fretful and seemed to be vocalising (well, screaming) more and signing less.  In fact, he didn’t really seem to be signing much at all now.  Added to this his Teacher of the Deaf had informed me that he was talking in school.  Calum - talking?  I had laughed when she first told me this but stopped when I realised she was in earnest.

‘In school,’ she continued, ‘he will move his finger along the words in a picture book and say them aloud.’

I knew what she meant but it wasn’t ‘talking’.

With his hearing aids Calum could access the lower frequencies and thus the rhythm of speech.  Calum loved rhythm in both music and speech.  He loved dancing and he would often pick up the phone and pretend he was speaking into it.  In fact, on one occasion he had dialled someone and it was only when I took the receiver from him that the person at the other end realised that it was not that they couldn’t hear clearly what Calum was saying but that Calum couldn’t speak.

‘I think you should have him assessed again for an implant.’  This was not the first time she had advised this course of action and it would not be the last.  As the weeks went by and Calum’s distress got worse I decided that we had nothing to lose by going for an assessment.  Maybe he wanted to speak, maybe he wanted to hear more and maybe, just maybe, that was why he was becoming frustrated.  Furthermore, where once we only knew deaf children who had experienced negative outcomes from an implant we had recently met a child who had experienced a very positive one.

So, we met, once again with a different consultant, at a different hospital.  I have just one memory of this meeting: Calum is spinning around and around on a chair in the consultant’s room.  He stops and looks directly at the doctor and ‘speaks’ to him gesturing with one arm.  It is his made-up ‘speech’; it has rhythm and cadences but no meaning.  The consultant remarks that he has not seen this before:  a five year old child without a language, who mimics the sounds of speech.

‘But he has a language – he uses British Sign Language.’ A voice from somewhere speaks gently to me, ‘He does not understand us when we sign to him, and he has not used one single sign today.’

I drive home in tears.

A few weeks later Calum is visited in his school setting by an audiologist from the hospital.  Following the visit they drive directly to see me.  The audiologist is upset and barely conceals his anger: Calum is now in a mainstream class with no communication support.  The qualified TA who initially worked with Calum left several months ago. In the Unit itself, sign language is actively discouraged.  That evening, when Calum returns home from his school in the taxi, it is for the last time. It will take several weeks for Calum to start using sign language with any confidence again; several months to find a different school placement with full sign language support but much longer for me to understand how any educationalist in the modern world can believe that by denying sign language to a deaf child it will ‘encourage’ them to speak.

And here we are at Addenbrooke’s.  We have negotiated the A14, the Trump and Ride and we are actually here.  As we approach the reception a young woman signs to Calum.   He signs back and they immediately begin a conversation: she will be his interpreter for this appointment.  When I booked the appointments I didn’t have to request an interpreter; it was automatically offered.  Waiting in the corridor we meet a young Deaf man in his twenties who has recently been implanted.  He signs but also, I realise, has speech.  As I watch Calum signing with him Calum’s key worker informs me that the young man only started learning sign language the previous year when he was considering whether to undergo an implant assessment.  I am fast realising that in this environment there is no war of ideologies. Here two camps are working together: the social and medical models have reached an understanding.  There is nothing to prove and everything to gain.  I find I am relaxing without even realising it.

As we walk in to see the consultant Calum takes the central seat.  I sit to the side with Calum’s hospital key worker while the interpreter sits beside the consultant facing Calum.   Calum explains why he would like to be considered for an implant; he would like to hear more.  Since the summer he has been practicing trying to speak certain words and phrases and realises that if he could hear consonants, the high frequency speech sounds, he would have more success.  I feel very proud of him and wonder why I was so nervous about this meeting.  It’s no longer about what I think or feel; the decision is now Calum’s and Calum’s alone.  The consultant smiles; he will meet with Calum again once the assessment has finished. 

Travelling back to the car on the Trump and Ride we discuss all the people we have met today; the interpreter, the young deaf man and all the hospital staff. We decide they were all really nice people. Calum is smiling. 

‘Are you happy?’  I ask.

‘Very happy!’  He signs.

Then he looks at me and tries to speak.  I ask him to repeat it.  Now I know what he is trying to ask; ‘How are you?’  Calum has been practicing this phrase.  And my reply should be; ‘I’m fine,’ because this is what we have been practicing. 

But, this time, my reply is different; ‘I’m not fine - I’m more than fine!’

Calum looks confused but then laughs when I sign what I have just said. 

We lapse into a comfortable stillness as we look out at the landscape.  No, we don’t know what the future will bring and if we had the power to see into the future I, for one, would chose not to look.  We are happy now and, even if the destination is unknown, we will enjoy the journey and all the new experiences it brings.

Catch the next instalment in a fortnight on PDDCS News

Previous entries: Telling Noddy where to go | Light travels in straight lines

One Mothers Diary: Telling Noddy where to go

Telling Noddy where to go 

Saturday 29th September 2012

I’ve been trying to explain the concept of a ‘mother tongue’ to Calum. Calum is very interested in etymology, different languages and peculiar words. He is sticking his tongue out, touching it and looking confused.

‘No, no,’ I try to explain, ‘the word tongue, many years ago, used to mean language. In fact, the French and Italians still use the word tongue (I write the words ‘langue’ and ‘lingua’ down on a scrap of paper) to mean both a tongue and a language. Mother tongue means your first language and the language you feel most comfortable using.’

Calum isn’t looking particularly interested at this point and wants to leave the table. He has finished his breakfast cereal and it’s a Saturday.

I continue, ‘Imagine a Polish family moving to Peterborough. The children attend local schools and become fluent in English but when they go home the whole family chats in Polish. Polish is their first language or mother tongue.’

Although born into a hearing family, Calum started learning British Sign Language a few days after his diagnosis at eleven months old. A month later Calum was introduced to a wonderful deaf woman by the Local Authority who became his bi-lingual tutor. He went on to attend a toddler group at the local Deaf Club, then a pre-school group for deaf children and, later still, a Deaf school. Although now attending a mainstream school with a unit for deaf students Calum still maintains strong friendships with deaf friends both teenage and adult.

‘Now,’ I sign to Calum, ‘what would you say your first language is?’

‘English.’ Calum replies.

‘No,’ I sign back to him, ‘I mean which language do you feel most comfortable using?’

‘English!’ Calum repeats with increasing exasperation.

I stare at him. I remember a friend who went to teach in Ghana with the Voluntary Services Overseas. Upon returning she told me how dreadful she felt when all the children in her class huddled around to inform her that they all wished they had blonde hair and blue eyes just like their beautiful, white teacher.

Have I raised a deaf child who thinks he is hearing, who wishes he was hearing? Other memories come back: the adoption course. Nearly twenty years ago, when I was incorrectly diagnosed as infertile Calum’s father and I completed an adoption course. I still remember the official guidance: ‘It is not possible to place a child in a family which has a different culture and language.’ We understood this and we accepted it. How wrong to place a child in a family with no role models to reinforce and nurture pride in the child’s own culture and language!

But we never consider the deaf child born naturally into a hearing family, do we? The innocent cuckoo in a blackbird’s nest.

What have I done - what have I failed to do?

Calum looks worried. ‘Have I disappointed you?’

‘No, no,’ I reply. ‘I thought you would say BSL, I thought…’

I try to tell Calum that one of the reasons he was not implanted as a child was because we didn’t feel we he was, in any way, second best or imperfect.

What I don’t tell him about is my political reasons. Following a road traffic accident in 1989, in which I became disabled, I firmly believed in and campaigned for the social model of disability rather than the medical model. Why insist a disabled child be educated away from their family in a special school when the local school can be made accessible? Why force an operation with possible unknown side-effects onto a deaf child when people can learn sign language and when television, films and videos can be subtitled?

Years before Calum was born, or even thought about, a friend was writing her PhD on the cochlear implant procedure. This warm, intelligent and caring woman had to put up with my incessant arguments about Deaf and Disability Equality. Needless to say, we didn’t stay in contact.

Calum must be noticing the anxious expression on my face:

‘But I’ve always liked words. I always read and write far more than I sign. I chat with my friends on the computer. Do you remember when I first started writing? I was very young, wasn’t I?’

It’s true. I remember now. I had a child who could write before he could walk: delicate, endless strings of letters which stretched on and on like miniature sweetie necklaces you can still buy in old fashioned tobacconists. Calum would sit in his high chair far longer than other children copying letters again, again and then again. In his push chair and in the car, yes, his eyes were drawn to birds and clouds sweeping across the sky, but also to words and slogans scrawled and splashed across bill boards and shop signs.

‘But – do you remember the first words you actually used to communicate? The first words you signed?’

He shakes his head.

‘Light on, light off! The same night you learnt that you stood up, holding on to the edge of your cot, repeatedly turning your bedroom light on and then off pausing only to sign what you were about to do before you did it!’

‘All night?’

‘Almost!’

But I also remember how he had no real interest in learning further signs at that young age.

He was more interested in the written word, or rather, letters. He was studying them intensely as though he was trying to crack a code, copying them into endless rows without breaks of any sort. Calum knew there was some sort of code hidden within all those shapes: one day he would find it out. Then one day the little Bletchley Park code breaker did just that. We had spent a wonderful afternoon in a large, rural park on the outskirts of the city and were on our way back home in the car. As we passed under a railway bridge near our home a splash of fresh graffiti in large white letters flashed into view: $%&* OFF!’ I turned quickly to the passenger seat and, out of the corner of my eye, saw Calum’s head nodding forward, his eyelids falling. My relief was palpable. But then I laughed to myself, was that the only thing I needed to worry about - Calum seeing swear words in written form? Yes, there were positive sides to being deaf: my son would never hear cruel taunts, dubious language, racist or homophobic comments from the ignorant: his hearing loss would protect him from all that.

Once home on the lounge floor surrounded by his pens and paints, paper and colouring books Calum roused from his sleepy state and set to industrious activity once again. After placing the permanent markers on top of the table, out of Calum’s reach, I walked to the kitchen wondering what to make for tea. Calum’s older brother would eat almost anything but Calum seemed to regard anything other than bread and butter as outrageously exotic. Staring into the fridge I heard Calum making his calling sound – a signal he only made when he needed something. I rushed back into the lounge to find him balancing precariously on the balls of his feet, one pudgy hand gripping the edge of the table the other proudly holding one of his bright yellow story books out for me to see. At almost two years of age Calum still wasn’t walking. I rushed forward thinking he was about to fall but then saw what he so desperately wanted me to see. There on the on the shiny yellow cover of his favourite story book my son had written his first sentence in thick, permanent marker.

His face was bursting with pride and expectation. I hugged him close as we looked at the sentence together:

‘$%&* off Noddy!’
__________________________________________________

Calum is watching me intently: ‘Why are you smiling?’ He asks.

‘I think I know why you say English is your first language, your mother tongue. I think I understand what you mean.’ I go on, ‘But when you chat with your deaf friends in BSL isn’t that easier, more relaxing?’

‘Maybe,’ he concedes.

He is turning to leave the kitchen. I tap him on the shoulder.

‘I need to know because we will have an appointment at the hospital in a few weeks’ time and it’s important (I think it’s important) that you are clear on how you feel as a Deaf person.’

I know I’m not making sense.

He humours me, ‘It’s okay.’ He signs.

‘One more thing…’ I have to ask the question. ‘Do you regret that I didn’t agree to have you implanted when you were little?’

His reply is immediate, ‘Of course not! This is my decision. I don’t want someone else making decisions for me. I was just a baby, how can a baby make decisions?’

He is gone before I register how surprised I am. I stare into the empty doorway - I have an incredibly sensitive and understanding teenager for a son.

Well, either that or I’ve done a remarkably good job of brainwashing…

More from One Mother's Diary in a fortnight.
Thanks to Darren Hankins for his help with images.

University develops music especially for cochlear implant users

This film investigates an exciting project undertaken by a team of academics based at the University of Southampton. The team there received funding to investigate how to help deaf people, who have received a cochlear implant, get more enjoyment from music.

Via ATR 

New! One Mother's Diary: Light Travels in Straight Lines

For the past fifteen years parents of deaf children born with a profound or total hearing loss and living in the developed world have faced a difficult decision very early in their child’s infancy – whether to implant or not. This is the secret diary of one mother who reflects on both the decision she made fourteen years ago and its implications. Read A Mother's Diary only on PDDCS News, every other Wednesday.

Light Travels in Straight Lines

Driving home from an after school club we take the scenic route via Marholm and Helpston. The blue sky is fading to gold on the horizon, and it looks like we’ll be having a lovely weekend. I turn to smile at Calum but he is looking straight ahead - the amber flashing lights of the level crossing are changing to red, the upright barrier arms are quivering – the signal that they are just about to lower. Calum raises his hands in a gesture of complete exasperation and vocalises his disappointment, loudly. I switch off the engine. We may just be here for three minutes but we could also be here for twenty. ‘Why do you always come this way? Why don’t you use the ring road?’ he signs.

‘I’d rather look at the trees and sky than the back of a bus for half an hour!’ His scowl changes to a smile. We use the wait for trains to pass at the level crossing to chat about his day in school. ‘So,’ I begin, ‘how was school today?’

‘I think I want a cochlear implant.’ Calum replies.

I knew this was coming. Why am I so surprised? A train rushes past and my mind races in a straight line back to a school holiday afternoon the previous summer.

Calum, Martin (my husband), and I had gone down to London to spend the day at the Science Museum in Kensington Road. We love it there; we could spend a week there. We’d managed to find a small room in the packed museum where we were the only people. There were no windows in this room, and, in the centre just a round, black, glass table. Placing your hands on the table surface caused lights to appear from within its depths. Mini beams of light, different colours darting from different levels, some thin, some thick but all travelling in straight lines. Calum was engrossed. Another boy entered with his parents. Not the same age as Calum, younger – I’d say eleven. He must have bought lighted head gear from the gift shop as in the darkened room I could see a bright light playing in his hair. Then I realised, it was an implant processor. In that small space both boys were deaf! What a coincidence! I was about to point this out to Calum but he was signing something to me very rapidly, ‘Look at this colour here – look at what happens when the green light goes across.’ I looked at the other boy; Calum turned and saw him too. The boy looked at Calum. I knew at once that he didn’t sign. ‘Can we go to the gift shop now?’ His speech was very clear. The boy turned and ran out. His parents followed more slowly.

I thought it would be a moment to make a connection. Often, on our travels we meet other people and families who sign. But there had been no connection; just a void, a vacuum.

Light travels in straight lines. Light exposes things which have been hidden. Out in the brilliant sunshine we walked to the Tube. I was quiet. Surely, it was only a matter of time before Calum made the connection? Calum, like other curious children, had a logical, scientific mind. The science museum is all about the ingenuity of humans and the technologies which improve human existence.

Thirteen years ago I made a decision which I thought was the correct one. Now, for the first time, I felt differently. For the first time I was seeing implantation purely as technology - superior technology. On the train home I asked Calum whether he ever thought about having an implant. ‘No way!’ he signed and turned back to his magazine. I was still thinking about the family in the Science Museum. It wasn’t right that they didn’t sign, it wasn’t right that their deaf child should be denied knowledge of what I regarded as his cultural language. But had I, in my turn, also denied my son a technology that could have helped him?

The level crossing lights are still flashing red. ‘Are you upset? Are you disappointed?’ Calum has been watching my face.

‘No, of course not!’ I smile. ‘If this is what you want I will help you. But we will have to ask our doctor to refer us to the hospital. Shall I make an appointment when we get home?’

Calum nods his head vigorously.

The level crossing lights have stopped flashing, the barriers are lifting, we are off.

So much to discuss but I can’t sign while I’m driving. A question is forming in the back of my mind. It’s pushing its way forward as all the others stand to one side to let it pass: Does my son wish I had agreed to the implant all those years ago?

It’s a question I will have to ask, but not tonight.

We drive on, homeward.

Next instalment: Telling Noddy where to go - only on PDDCS News

The interesting views expressed in this piece are that of the author and not of any organisation. If you have questions about cochlear implants or any issue related  to deafness in children or young people, please contact the NDCS Helpline.

Rondo: World's first all-in-one cochlear implant design from Medel

Austrian cochlear implant manufacturer Medel has revealed it has won approval for its new design of cochlear implant, which is an all-in-one coil processor and battery pack. It may be worn by all users of Medel impants and is called Rondo. Medel say of the device which is based on the Opus processor and comes with a remote control:

Its single-unit design makes it comfortable, compact and convenient to wear so that users can simply ‘put it on and go.’ For discreet wear, the audio processor disappears easily under the hair. With no ear hook, separate coil or cable, and a fully integrated design, RONDO features fewer parts for enhanced durability. Because the ear is free, RONDO is an ideal audio processor choice for individuals who regularly wear glasses or sunglasses.

Good news for those who want to be discreet. It will be interesting to find out if the change in microphone position has an impact or if Medel have devised method to keep it working when the hair gets a little damp. Hair noise will also be a factor. Here is a picture of one which was leaked a few months ago showing it running on normal hearing aid batteries and being around 1cm deep.

More information here

Jazz up your hearing aid or processor!

PDDCS learns of a new blog this week which shows you how to make your hearing aid or cochlear implant bang on trend! Have a look at some of these designs and see what you can do!

Pimp My Hearing Aids is created by craft business owner and designer Sarah Smith. Have a look and see what you could do .. The video is created by NDCS's Ni Gallant.

Hearing .. but not as you know it

Watch this interesting video about one young lady's journey with a cochlear implant that took her all the way to Oxford University and their dancing team!

Telephone skills workshop

The Emmeline Centre at Addenbrookes run telephone skills workshops for CI users. The next group runs Tuesday 14th August in Coton House from 1330 to 1600.

For further information about the content of the group contact Frances Harris, Speech and Language Therapist, Adult Rehabilitation Team on 01223 217589, SMS 01223 410229 emmelinecentrereception@addenbrookes.nhs.uk
Telephone Skills Workshop

Are auditory nerve implants the successor to cochlear implants?

Could auditory nerve implants be the future for severely or profoundly deaf children? The Sun reports today that an Irish toddler has had the surgery to implant one and the results have been encouraging. At the same time, researchers at the university of Michigan have switched their attention from developing new cochlear implant devices to focusing on nerve implants as they believe they have the potential to perform far better.

The technology is in its early days and it is reported that it will be at least ten years before nerve implants are ready to take the place of cochlear implants.

What does a cochlear implant look like inside the head?

Following up on the earlier post about how a baby reacted wonderfully to the first sounds though his cochlear implant, check out this illustration of a cochlear implant and how it sits inside the head. This illustration shows the Nucleus System.


Note that there are two wires which come from the internal part of the system which is above the ear. One makes its way away from the ear, which is the ground electrode. This electrode doesn't stimulate the cochlear itself but is essential to how the system works.

The second wire, with an array of electrodes at its tip, makes its way through the bone to the middle ear where it enters the cochlear either through a natural opening opportunity, called the round window, or through a hole made by the surgeon.

On the outside of the head, is the speech processor, which sits behind the ear. Above that is the coil or transmitter, which adheres to the site of the implant on the inside of the head by magnetism. This magnet has to be strong enough to hold the coil securely to the head, but not too strong because that can cause soreness.

The processor behind the ear, like a hearing aid, has a microphone inside it, but unlike a hearing aid, doesn't make the sound louder. Instead, it changes the sound into electrical signals which are transmitted across the skin to the implant by using FM radio signals. The implant then stimulates the electrodes placed in the cochlear. That stimulation sends tiny electrical currents down the hearing nerve to the brain where they are understood as sound.

There are between 10 and 24 separate electrodes on the electrode array which is placed inside the cochlear. The number depends on the maker of the implant. The electrodes are spaced out so that they stimulate different parts of the cochlear and this makes a difference to the sound that the brain hears. For example, electrodes positioned at the entrance of the cochlear make a higher pitch sound while those deeper in make a lower pitch sound. So a lorry going past would stimulate the electrodes deeper in, while birdsong would stimulate those towards the entrance.

Or put another way, an 'mmm' sound would stimulate the electode deeper in while the 'sss' sound  would stimulate those toward the entrance. Having an appreciation of all the frequencies used in speech is one of the main reasons people have cochlear implant operations.

So far, cochlear implants have been given to over 200,000 people worldwide with around one thousand implanted annually in the UK alone.

For more information and links check out Action on Hearing Loss' website

The moment a baby hears for the first time

This video has been a big hit on YouTube this week and across Facebook. It shows the moment that an eight month-old baby has his cochlear implant switched on for the first time.



Most children who have a cochlear implant fitted experience good results. The 'switch-on' is often a big moment in the family's journey when children can show a reaction to sound, sometimes for the first time ever.

In this clip, the baby seems to show that he knows that he is listening to his mother's voice. Progress with cochlear implants varies from child to child and a programme of rehabilitation is put in place for children to help them understand what noise and speech are, this is a skill that develops over time.

The family in this clip will likely have to attend many tune-in sessions over the coming months and his carers will have plenty to do in terms of rehabilitation activities to make the most of the cochlear implant - although it does look like they have made a brilliant start!

New Cochlear Implant User Group

Norfolk CI Users Group - First Meet up - 28th July 2012 You don't have to live in Norfolk!

Norfolk

Create a personalised book for your deaf child/sibling

Image courtesy of Squeeze Marketing 2012

Experience books have created bespoke books that can be personalised for young deaf siblings/children. The books have been developed by the parents of a Cochlear Implanted boy; John Featherstone from the ‘My Brother John’ books. Parents who have bought them have loved the books. The 20 page book can be used to explain to friends, family, carers and school staff how your child communicates, explain about their hearing loss, and show their interests and favourite things

A sample of a few pages can be viewed on the website http://www.experiencebooks.co.uk/

Worth a look...

Watch Rita Simons: My Daughter, Deafness and Me

Eastenders star Rita Simons and her family were the subject of a BBC1 documentary this week that followed the family through the decision making processes around education and cochlear implantation.

Featuring an insight into many apsects of cochlear implantation, including viewpoints from medical professionals, family and the deaf community, Rita and her husband balance their daughters immediate needs with likely further hearing loss in future and the medical and social implications. The father also gets a simulation of what cochlear implants may sound like. 

Rita also pays a visit to the Mary Hare school to learn more about how specialised education for some deaf children, away from mainstream schools, may be able to provide better outcomes and finds seeing the deaf children's achievements an emotional experience. 

Well worth a watch.. 

Deaf Footballer Sent Off For Wearing Hearing Aids

Normally footballers are sent to the stands because an overpaid fellow professional is rolling around the floor looking like they've been attacked by a dangerous dog following a contact so slight it could almost be described as romantic.

But its a different story if you play for pub team in Rotherham and get a referee seemingly hell-bent on taking health and safety madness to new levels: 'Never mind the studs in your boots, Son ... I'm worried about your killer hearing aids'.

The Mirror has the full story here about how hearing aid wearer Craig Beech was told to get off the pitch by the referee for wearing hearing aids during a match. Refusing to bend to appeals from Craig's team mates and the opposition, the match was bought to a premature end by the daft ref when Craig's team, The Mason Arms, walked off in protest.

It's a wonder that the referee hasn't sent a player off yet for having teeth. See the FA rules about hearing aids and cochlear implants here. Basically, its fine to wear them and all this need not have happened..

Picture: The Mirror
HT: Filippo Adamo Pasqualino