One Mother's Diary: ¿Habla español?

The PDDCS invite you to read and enjoy the latest in our popular serialisation of One Mother's Diary.

 

 

 

10 ¿Habla español?

                               
                                              
                            One grey weekend November 2013

Although the beginning of 2013 started in traumatic fashion with Calum’s implant operation and its subsequent side effects, with hindsight I can now see that although it was a problem it was just that: one problem and not several.  Now, sitting on the top shelf of the problem area in my mind are several problems all jostling for the number one slot.

I’m sorting through official looking letters and papers on a grey Sunday morning in

November.  Everything is mixed up together in one drawer.  Now that I work five days a week (not full time but as I work in a school it feels like it) any official papers which arrive I shove into one drawer thinking that I will sort them out at the weekend.  But all my weekends fuse into one acrylic blob of me driving everywhere trying to sort out and visit various family members all with problems of their own.  It’s as though everyone wants a part of me but there’s not enough of me to go around. 

I’m looking through papers which I should have actioned weeks ago.  The first letter which catches my eye is one about our company tax return should have been delivered to HMRC some weeks back.  Following my husband Martin’s redundancy from a Local Authority two years ago we set up a Limited Company and I did the accounts; mostly teaching myself from books and online tutorials.  Somehow I seem to have totally forgotten that I’m still supposed to be doing this.  Other papers are there: the Local Authority has assessed my mother (they spoke to her for fifteen minutes) and have decided that she doesn’t need the level of care which she is currently receiving.  My mother, knowing that she was about to be assessed, decided to get top marks in this test and took it upon herself to answer yes to every question put to her by the social worker.  I sat beside the social worker, let’s call her Sarah, as she asked her questions.  At several points, as Sarah directed her questions to the curtains, I had to remind her that my mother was deaf and that she relied heavily on lip-reading.  On the umpteenth prompting Sarah leaned forward to my mother and asked very loudly, ‘How are you at getting around?’  My mother suddenly became very animated,

            ‘Ooh, I’m very athletical – look!  Look!’

            My heart sinks as I see my mother waggling her ankles, which are raised on a small stool to prevent swelling, up and down.

‘So you are quite fit?’  Asks Sarah, more as a statement than a question.

My mother beams with pride.  I can see her place in her beloved care home slowly slipping away from her.  Sarah turns to me and I seize my opportunity. 

            ‘Look, my mother has dementia, she sees this as a test, and she’s remembering how she was not how she is now.’

            But Sarah sees no evidence of dementia.

            ‘How is your memory?’

            ‘My memory is wonderful.  There is nothing wrong with it!’

            My mother is beaming and now she is laughing.

            ‘Can you wash yourself?’ asks Sarah.

My mother explodes with laughter.

‘What a ridiculous question!  Can I wash myself?’ 

And, then, because my mother is laughing so much I find myself joining in.  I can’t stop myself.  I realise that I want to cry but I’m laughing instead.  How did we get to this situation?  Why did I not see this coming?  Have I been so focussed on Calum and his brother and the needs of my father that I forgot about my mother?  I feel like I’m in a Monty Python sketch.  The questions just get worse:

‘Can you cook for yourself?’

‘No – she can’t!’ I hiss in Sarah’s ear.

‘Yes I can!’ shouts my mother with glee.

Sarah turns and beams triumphantly at me.  I want to hit her.

            I’m sifting through my letters and papers on a cold, grey Sunday morning.  There’s a letter from a solicitor about the small, bungalow we will be buying for my father.  Did I reply to that?  Is that why the sale hasn’t progressed?  My father keeps telephoning:

            ‘What’s happening?’  He asks.  ‘When am I moving?  Have we got a date?  I need to know.  I need to sort things out.  I’ve got a side board I need to sell.  Can you get a man round to buy it? I want a man to come round and make me an offer!’

            I try to explain that it’s probably better to donate old furniture to charities than trying to sell it.  I think of my father’s side board from the 1970s with its rusty, green handles and mildew.  I’m thinking that even a charity wouldn’t want it.

            ‘I don’t want to give things away!  I want money for them!  I want a man round!’

            I tell him that mum may not be able to stay in her care home.  His reply is instant:

            ‘Well – she’s not coming back here!’

            I look at all these papers and feel very depressed about everything.  The world is grey.  Is there a point to any of this?  And then another sheet of paper falls into my hand. 

            ‘English: Holiday in Mallorca (Majorca)’ 

            What’s this?  I haven’t seen this before.  It’s in Calum’s handwriting on A4 lined paper.  I must have picked it up and mixed it up with all my ‘important’ papers when I was having a tidy-up. 

            ‘First day: The owners have a dog called Guapa which means beautiful in Spanish.  Settled down and unpacked our bags.  Feel excited for the holiday!’

            It’s a diary which Calum must have written upon our return after our summer holiday in Mallorca.  Earlier this year our neighbours, a lovely family which we all miss, moved to Andratx in Mallorca so we decided to go there for our annual holiday.  Reading Calum’s entries for each day I am back there in the heat, with the blue skies and our unusual landlords. Due to a mix up our landlords thought we would be arriving in the morning but we thought we couldn’t arrive until 4 pm.  Consequently, by the time we did arrive we were exhausted from the flight, shopping and generally trying to find things to do to fill in time whilst they were drunk from having had wine open for our expected arrival three hours earlier.  Our landlords were British and, although I had explained this to Calum he was still determined to practice some Spanish which he had been learning.  This was why in the general confusion of our late arrival we hear,

            ‘¿Habla español?’

            Everyone turns to look at Calum.  The older landlord, Grahame, inspects Calum and replies,

            ‘Si.’

            Calum beams.  Grahame then proceeds to welcome Calum in Spanish and introduce their dog, Guapa, also in Spanish.  I translate Grahame’s Spanish into sign language.  Calum then strokes Guapa and says,

            ‘Gracias.’

            Calum is especially proud of his Spanish ‘th’ sound which many British people find confusing and difficult to pronounce.

            Grahame stares at Calum whilst rubbing his chin thoughtfully.

            ‘Ah – I see – he’s deaf but can understand Spanish.  No English, then?’

            He looks at us but then walks off before we are able to understand what has happened or reply.  For the rest of the holiday when we do bump into Grahame, he speaks to Martin and I in English but to Calum in Spanish.  Unfortunately, I am unable to stop myself translating everything that Grahame says into BSL with the result that I reinforce his belief that Calum is unable to hear English but is able to hear and understand Spanish.  At one point Martin gets annoyed,

            ‘Why do you do that?  Why do you keep translating what he says into sign?  Why don’t you just tell him Calum is deaf?’

‘I HAVE!’

            ‘Well – tell him again!’

            I see Grahame by the pool and seize my chance.  I tell him that Calum is deaf.  Grahame looks at me and tells me that he knows that but that he also has known several disabled and blind people and that many people have impairments and that the world is made up of all sorts of people. 

            ‘No, I mean he’s deaf not Spanish.’

            I don’t know if it’s the heat, or the wine but Grahame looks at me as though I am slightly mad.  Then he clearly changes his mind about me, assumes he has misheard and says,

            ‘Yes, he’s an amazing wee chap.’

            We both go our separate ways, both wondering what the other one means.

            I carry on reading Calum’s Spanish diary.  ‘On another day I met six deaf ladies from Scotland and had a good conversation.’  Oh how well I remember that day.  We had spent the day in a water park and decided to go into Magaluf for the early evening just to see if it really was as bad as it’s depicted on television.  I am pleasantly surprised by the seafront.  I sign to Calum how nice it is.

            ‘Oh stop signing to me!’  He signs angrily.  ‘Speak it!’ he says. 

            Oh dear, I think to myself, this is the stroppy teenager who doesn’t want to appear Deaf.  I ask him, with speech, if he wants an ice cream.  He doesn’t understand.  I ask him in sign.  He understands immediately.  He signs ‘chocolate please’.  Suddenly a woman is standing up in a nearby bar and is waving to him.  She beckons to him as though she knows him. 

            ‘Do you know her?’  I sign to Calum but Calum is already at her table.  I walk over to the table with his chocolate ice cream.  Around the table are six women all involved in an animated conversation with Calum.  Their hands fly and their eyes sparkle.  They pull a chair over for Calum.  It’s a wonderful sight: seeing my son laughing having a conversation with a group of people on holiday.  I turn to my husband,

            ‘Let’s sit down and get a drink.  I don’t think we’ll be going anywhere for a while…’

            Those wonderful Deaf women were from Glasgow.  Two days later we spent a day at the water park with them.  It was so lovely meeting and spending time with them and I felt an incredible sense of pride in my son as a Deaf person.  I noticed hearing people looking at Calum and the women as they signed.  There was no sense of ‘oh gosh – they are deaf – poor things…’  It was more a sense of ‘oh – wow – look at those people signing!’  It was a great day, it was a wonderful day, it was a day on which Calum recharged his ‘Deaf identity’ batteries.

            Meeting up with our much-missed former neighbours they couldn’t get over just how much understanding of speech Calum had acquired.  They had left for Mallorca before Calum had had his implant operation.  We spent some wonderful days with them, too, swimming, laughing and catching up.  And then, too soon, our holiday was over.

            As we put our last bag into our hired car Grahame came out to wish us goodbye.  We said our goodbyes in English and then, turning to Calum, he said,

            ‘Adios!’

            ‘Adios!’ replied Calum. 

            Somewhere on is Mallorca there is an expatriate who tells stories of a deaf English boy he once met who couldn’t speak English but who could speak Spanish.   

We live in a crazy, mixed up world.  We get knocked down and then we get up again.  I thought my days of fighting Local Authorities were over.  Well, they might be as far as Calum is concerned but this time it’s the other end of the age spectrum waiting for action.  Righto Ms Social Worker Sarah, here I come…

 

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

 

The Changeling - One Mother's Diary

 

                              The latest in our popular serialisation of One Mother's Diary.

9 The Changeling

Spring 2013

The blacksmith and his wife had been blessed with two beautiful girls but what the blacksmith really wished for was a son.  So when the blacksmith’s wife announced that she was again with child there was much celebration amongst the small lakeside hamlet and much expectation and hope in the blacksmith’s heart. 

Indeed, when the son was born one beautiful May morning, the whole community rejoiced. 

Honey cakes were baked and distributed by the women and the children ran laughing and shrieking through the bluebells at the edge of the woods.  Of course, they were wise children and knew not to go into the woods where the mean-minded fairy folk dwelled.  Long into the night the blacksmith drank with the hamlet men for now he had a son to continue his trade.  

The blacksmith’s son was a fine, strong child with rosy cheeks and a fine shock of fair hair.  At the age of six months he was crawling and by nine he was walking!   But that was before Candlemass: the midpoint of winter.  It was around this dark point of the year that the blacksmith awoke to see someone or something gliding across the foot of the family bed.  He immediately sprung up screaming.  At this the dogs howled and the women shrieked.  Only the son slept on.  All eyes turned to him; was he dead?  Had a fairy entered and slipped poison between his plump, pink lips? The mother pulled him to her breast but the infant merely smiled and turned his button nose toward her warm scent. The family’s relief was palpable and all returned to sleep: the blacksmith must have been dreaming.  

Following that night, however, the boy seemed changed; at least he did to the blacksmith.  The sweet cooing noises he had previously made changed to a higher, shriller pitch.  A wantonness filled him: he refused to turn to his mother’s call.  Worse still: he would not turn to his father’s voice.  Little by little the realisation that he had been visited by a fairy on that Candlemass Eve dawned upon the blacksmith.  With a slow horror he understood that his own son had been taken and another one left in his place; a child, who looked identical but which, in reality, was a fairy child. You see, they did this, the fairy folk; from time to time they grew jealous of the perfect, human children and stole them away into the depths of the forest, leaving in their place a changeling.  But why had the fairies done this to him?  What had he done wrong? He began to search the forest sometimes leaving his forge for days at a time. But he never found the fairies and he never found his son.  And he never accepted the changeling: he couldn’t.  As the years passed and his son still refused to speak he sometimes found his wife using a sort of gesture with the changeling when they thought his back was turned. The blacksmith roared in fury.

The villagers pitied the blacksmith and on dark winters’ nights, when leafless branches scratched the wooden roofs of their tiny houses, they thanked God that the fairies had chosen his family rather than theirs.

 

I have a changeling under my roof.   Sometimes I wake around two or three o’clock in the morning.  Recently I have found myself looking in on my son as he sleeps in his bed.  The moonlight throws a pale silver light across his fair hair. 

‘You are the same but not the same.’  I whisper.

Change has happened in this house and someone doesn’t seem to be coping with it very well.  That person is me.  I feel like I am standing on quicksand or that the walls around me are constantly changing and shifting. 

There are moments, very strange moments, when I forget that my son is deaf.  And I don’t understand how this can be and how I can be so forgetful.  I write phrases on A3 cards; phrases such as:

Your tea is ready.

Would you like a drink?

It’s in the fridge.

Are you ready?

Would you like spaghetti for tea?

And I read them out to Calum pointing to the sentences as I do so.  After he has heard them a few times I then read them out (in any order) and he has to point to which sentence I am reading.  He is getting very good at this. So good, in fact, that sometimes I forget he is deaf.  This becomes especially apparent when he reads the sentences back to me and I correct his pronunciation.  On occasions (usually when I am tired) I have found myself losing my patience and saying,

‘No, no, no!  You don’t say it like that – you say it like this…’

And I suddenly realise what I am doing and I catch my breath and think – I’m reprimanding him as though he were a hearing teenager and not deaf.  So then I apologise and Calum looks confused because I am confused.

It’s at night when I lie awake in the small hours that I try to take in the enormity of what has happened to my son.  I never expected this much: I never expected the implants to make such a huge difference.  All the time, while we were going through the implant assessment, I was trying to get across to Calum that the process would make some difference but not that much difference.  I tried to explain that he would have greater access to environmental sound which would be very beneficial; he would probably hear smoke alarms, the doorbell etc.  But I was at pains to hint at the possibility that he might never make any sense of speech sounds.  And it wasn’t just me: the staff at the hospital were trying to remain realistic too.  It was Calum’s decision to have the implants and I supported that decision even though I thought - yes I did think this - I thought he faced the possibility of being hugely disappointed.

How do I put this?  That shock which some hearing parents feel when they are told that their child is deaf – well, I think I’ve got a peculiar type of reverse shock. 

Is Calum still deaf?  Of course he is.  But he’s changed.  Or he’s changing.  Sometimes I hear whispering from his room and when I look in he is reading something from a book or the computer screen and trying to pronounce it.  It’s almost like an ethereal whispering or the sound which monks must have made, before they learnt that it was possible to read silently, in monasteries centuries ago.  It’s consonant sounds I hear mostly – sh, ss and k sounds that he could never previously make or hear.

And sometimes in the night, when I check in on him, I look down and think:

‘Where did the old Calum go? When did he disappear?’

But then the voice of reason at my side tells me that all children leave; that we only ‘have’ them as children for a few short years before they become people in their own right.  Most likely, I would be saying this to myself about my son even if he were not deaf. 

Of course: I understand now.  Calum was not implanted as a toddler or a young child: he has been implanted as a teenager; the greatest period of change in a person’s life.

Today in developed countries we have so much which benefits deaf people; access to education, a freedom to learn and use sign language, the internet, digital technology and medical technology.   Sometimes, when I am lying awake at night, I thank God that Calum was born in this era and not centuries ago when deafness or disability was explained away by the wrath of God or some supernatural force. 

What happened to the blacksmith’s son, the changeling?  All research points to the sad fact that profoundly deaf children born into hearing families in communities with no knowledge of the deaf community or of sign language most likely would have had an extremely impoverished, miserable and isolated existence.

But there may have been an alternative for our changeling…

 

One day, just before midsummer, a group of troubadours visited the village.  They sang tales of wronged kings and forest dwelling dragons but also of a village in the south where the people talked with their hands.  Of course, the blacksmith’s son could not hear the troubadour’s songs.  But his elder sister could.  Before they left she asked the troubadours if there really was a village where people talked with their hands rather than their voices. The younger men shook their heads and smiled but the eldest man took her to one side and whispered that he was sure it was true.  He had heard that below London in the forests of Kent lived a community where people spoke with their hands. 

It was not long after the troubadours left that the blacksmith’s deaf son and his eldest daughter went missing.  They were never seen in the village again but rumour has it that when a large community of deaf people from the Kentish Weald sailed for Massachusetts in the 1600s they included a very fine deaf blacksmith and his hearing sister.   And, as all Deaf historians know, it is this Kentish Sign Language which when  combined with French Sign Language (as it was in the seventeenth century  in the first Deaf American school in Hartford, Connecticut) that has given us the most dominant sign language in the world today: ASL or American Sign Language.

  

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

 

 

 
 

Reminder: Technology workshop for parents

Reminder!!!

 Action on Hearing Loss will be hosting a Technology Workshop for parents of deaf children on Thursday 25th July from 10.30-11.30am. See further details below

The NDCS will also be present to explain how families can access their one month technology loan service.

One Mother's Diary - Mandy, oh Mandy…

Enjoy reading the 8^th instalment popular series of anonymous diaries of a mother of a deaf child:

                                                                        Mandy, oh Mandy…
                                                                        27th February 2013

‘Mandy, oh Mandy – you came and you gave without taking’. Well, that's what Barry Manilow would have us believe  but the truth is darker and altogether far more sinister.

As a child I was obsessed with Mandy: I loved her, I adored her, I wanted to be her. Now, conversely, I hate both her and all that she stood for with a passion. I’m not making sense yet, I know this, but stay with me and all will become clear…

It’s the day following Calum’s ‘switch-on’ and we are back, in the afternoon, at the hospital for the second part of the programming of his implants. I’m still in a daze; I can’t quite get my head around the idea that suddenly my deaf son is making sounds that he has never, ever been able to make before. It’s rather strange that this is affecting me more than the knowledge that he must also be hearing sounds that he has never been able to hear before. Last night I went to bed thinking, ‘he can make the ‘K’ and ‘L’ sounds! He can say his own name – Calum!’

As we drive to Cambridge I know that Calum is looking at me. I turn briefly towards him; he is smiling. What an amazing journey this ‘switch on’ is and for the first time, the partial paralysis of his face (which is diminishing now) seems a very minor worry. Everything seems different now. I have to be honest with myself; I did not expect the operation and the implants to make this much difference. And we are only on day two…

At the hospital after further programming, the volume of the implants is raised. Calum will be able to raise the volume himself over the following week with the hand control. The mood is very upbeat and Calum is trying to say a few words and demonstrating how he can now make ‘sh’ and ‘ss’ sounds – again these are sounds he has never been able to hear before nor differentiate between. Calum tries saying,

‘My name is Calum.’

The speech therapist turns to me, ‘Calum now has to learn how to do something which we all take for granted.’

I look at her wondering what this could be. Going through my head is the possible answer: that he must learn to wait his turn before interrupting. Instead she says,

‘He must learn how to speak and breathe at the same time.’

I hadn’t even considered this. So much of what I, as a hearing person, take for granted; a subtle shift of emphasis in speech, inflection, pause and pace – everything that makes speech easily understandable is achieved by an almost unconscious control of our breathing. I’m remembering my private drama lessons in the 1970s which always began with breathing exercises and the mantra of my drama teacher; ‘good vocal projection can only be achieved with full control of the diaphragm!’ Despite hours of vocal training, I have to say that I never achieved the mythical inter-costal, diaphragmatic breathing required by all stage actors. I was always the unremarkable girl squeaking from the back of the stage. The speech therapist has suddenly depressed me more than she can ever know. What chance does Calum have of ever learning, at this late stage, how to breathe and speak at the same time? The speech therapist is trying to explain to Calum the importance of controlling one’s breath. She turns to me: ‘It’s what you often hear in deaf speech; not being able to finish words with their natural cadence because you have run out of breath.’

Mandy, oh Mandy…

Goosebumps rise on the back of my neck, I shiver involuntarily.

The year is 1991. This is the year I left teaching to work in Disability Rights as an Equality Officer. Two years earlier I had become disabled following a road traffic accident. It’s a Saturday afternoon, it’s a lovely summer’s day, and it’s the occasion of a family get-together: my parents are here and my mother’s sisters have come up from London. Realising that I’ve forgotten one very important component for my mother’s favourite drink of gin and tonic I have just nipped out to get some lemons from the local shop. Returning through the front door I am greeted by what I can only describe as a one woman show: my mother with her back to me, the rest of the family seated in a semi-circle, on the sofa, on the arms of the sofa or on kitchen chairs gripped by her performance. My mother is staggering around making guttural sounds. My shopping bag slips from my hand. She hasn’t seen me. A cold wave seems to fan out from my heart and freeze my face. I feel sick; she appears to be doing an impression of the part Orson Welles played in film The Hunchback of Notre Dame. One of my aunts nudges the sister beside her and they gesture to my mother to turn around. Her face is flushed a delicate pink with the exertion of her performance.

‘What are you doing?’

One of my aunts answers: ‘Oh your mum is doing an impression of a deaf girl who used to live down the road when we lived in Islington. She was so funny!’

I turn back to my mother.

‘Why are you doing this?’

I feel so frustrated, I’ve spent hours trying to explain to my mother that I don’t feel sad that I am disabled, I just feel lucky that I’m still alive. I’ve tried to make her understand that unlike her generation younger disabled people don’t feel ashamed of wheelchairs, hearing aids or any other aids that make living easier: instead we welcome them, we rely on them and we adorn and personalise them with all sorts of banners, stickers and ribbons. We don’t want sympathy or charity – we want rights. But ridicule… I hadn’t even considered that.

‘Are you going to make fun of me next?’

There is a very awkward silence. Despite my anger and feeling of revulsion I am also strangely aware that I am ruining my own party.

‘Jill, she was deaf. She wasn’t disabled. Everyone made fun of her: she couldn’t speak properly. Her mum didn’t allow her out but she used to call to us in her funny voice from her bedroom window.’

I can’t remember whether it was my mother who said that or whether it was one of her sisters but I do remember that the conversation then turned to the film ‘Mandy’ which was made in 1952. I remember someone saying that she must have had learning difficulties, too, because deaf people can learn to speak – just look at Mandy! Yes, someone else agreed, she ended up having a lovely little voice whereas all the other lazy ones just sounded awful!

Of course, it’s common knowledge now that the actress, Mandy Miller, who played the eponymous heroine ‘Mandy’ was, in fact, not deaf herself. So – were there no deaf actors in this film, probably the most famous one ever made about a deaf character? Oh yes, there were: all the other deaf child characters in the film were played by deaf children…

I didn’t know that, of course, when I acted out the part of Mandy with my teddy bears, my Sindy dolls and a balloon in our back garden as a small child, I just wanted to be her. She was so wonderful, so clever and everyone loved her. Everyone talked about her – the film had such a huge impact even decades after it was first released. If you were deaf there was no need to use gesture or sign language, if you really put your mind to it you could speak like little Mandy, with a lovely little hearing voice. Everyone knew that!

The afternoon of the post-lemon shopping incident took place in 1991. I had my first son in 1995. Calum came along in 1998. In the very early part of 1999, on the eve of Calum’s ABR (auditory brainstem response test) a little voice at the back of my mind whispered, ‘Calum is deaf. And he’s not just a bit deaf; he’s very, very deaf.’ I was alone in the kitchen, late at night. I ran up the stairs to my husband who was already in bed. I woke him up.

‘I think, no - I know that Calum is deaf.’

‘Look, let’s just wait until we’ve had the tests. Let’s just wait to hear what they say.’

‘No, you don’t understand - I know. And I know that he’s very deaf. And I hope that he is because I don’t want him to be half deaf and to be forced to learn how to speak. I don’t want him always to be struggling. I don’t want people to make fun of his voice…’

Oh, Mandy, you didn’t come and give without taking you came and gave and credence to a very damaging prejudice against the entire Deaf community.

Oh, Mandy…

I don’t remember how that summer’s afternoon get-together ended or whether any of the lemons ever ended up in anyone’s gin and tonic but I’ve never been able to banish from my mind the vision of a deaf girl leaning out of a window in North London gazing longingly at the children playing in the street below.

So – Calum has now got to learn how to breathe and speak at the same time. The thought of this herculean challenge takes my own breath away. I’m feeling so disheartened but I know it’s because of the rush of memory, the lemon afternoon, the lonely girl at the window and Mandy. It’s very late now – it’s nearly six o’clock. If we try to leave the hospital now we will hit the worst of the evening rush hour traffic. I persuade Calum to eat in the hospital cafeteria – as long as they have one piece of fried fish left, curling up on the hot plate, he will be satisfied. My heart lifts when I see that they also have a portion of spinach and chick-pea Massala left: spicy food always cheers me up.

‘Orange jookee please,’ says Calum.

‘What?’

He lifts a bottle of orange juice from the chilled drinks shelf.
‘Ah – juice! The ‘C’ in juice is soft like an ‘S’.’ I explain.

Calum laughs.

‘Orange juice please!’

‘Does my voice sound good?’ Calum asks me in sign language.

‘You sound fantastic!’ I reply speaking and signing.

And he does – Calum sounds like a deaf person speaking – he sounds great! I love his voice. I suddenly realise that I like the sound of deaf voices. How many years has it taken me to feel this way?

We sit down and tuck into our respective meals: Calum into his crunchy, dried-out fish (‘it’s a bit hard’ he signs) and me into my rather large portion of Massala. Calum is smiling so much it appears to be slowing his eating down.

In my mind’s eye I see the character of Mandy with her face pressed to a balloon in the most famous sequence from the film, the one where she says her first word: ‘baby’. And then I am there – I am in the film! And what am I holding in my hand? Could that be a rather large darning needle?

Ha! Got you, Mandy!

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

One Mother's Diary: Expect the Unexpected

Our popular series of anonymous diaries of a mother of a deaf child, the 7th instalment sees Calum and his mother experience the world, following the 'switch-on'.

One Mother's Diary:  Expect the Unexpected

Tuesday 26^th February 2013

            ‘What?’

“Pen-kill.”  Calum is holding something in his hand which he has picked up out of the basket on the dresser by the front door where we keep old keys, dead batteries and screwed-up receipts

“What?” 

We have been standing here for nearly an hour since we arrived home from Calum’s implant ‘switch-on’.  It’s late, we are both tired, but seem rooted to the spot unable to muster the energy to take even our coats off. 

“What?” I ask again. 

Today has been nothing like I had been expecting. But then, I have found that events almost never turn out as I imagine they will.  In fact, I’ve almost got used to anticipating the exact opposite to what I am hoping for.  I say almost as, in my heart of hearts, I still cling to fantasies and hope that the best of all possible worlds will happen.  Well, it can’t be much fun being a pessimist.  Half the fun is in the waiting.  Sometimes, all the fun is in the waiting. If you had asked me yesterday how I had been expecting my son’s cochlear implant ‘switch-on’ to go I would have replied that I wasn’t expecting much at all, given Calum’s age and the fact that he communicates exclusively through British Sign Language and cannot lip-read.  I would have been at pains to point out that at Calum’s age (he would be fifteen in a few days’ time) outcomes are far more conservative than they are for infants and young children. I would also have explained that at best the implants may give Calum better hearing of environmental sound rather than appreciation of human speech or the ability to mimic it. 

But if you had asked me what my fantasy was of what would happen at Calum’s ‘switch-on’ it would have been something quite different.  I had secretly been hoping that what would take place today would make his post operative pain and the worrying side effect of Calum’s partial facial paralysis pale in comparison to the gain.  Only this morning at breakfast when Calum was still half asleep I had asked him to laugh; and yes, there was no mistaking that the effect of paralysis was still there.  Was it getting better?   Some days I thought so but, then, other days it was painfully obvious that it wasn’t.  We had been told that it would only be temporary and Calum firmly believed this.  I had been trying my best to believe it, too.  Not only would a dramatic positive reaction to his ‘switch-on’ be wonderful for Calum it would also help me shake off this feeling that I had sleep-walked into allowing my son have such a major operation.  And so my fantasy had been this; the switch on process complete the audiologist would ask me to say something to Calum.  I would say his name.  Calum would turn to me, a smile lighting up his face.  The audiologist would sign to Calum, ‘What do you hear?’  And Calum would sign back, ‘Something wonderful!  My mum’s voice sounds lovely!’

After all, Calum has never heard my voice.The reality was this: During the programming and mapping Calum sat with a moderately interested look on his face.  At several points the audiologist turned her computer screen to display what looked like a bar chart.  She explained that it showed that the eleven electrodes, which the surgeon had placed in each cochlear, were all working.  And then came the activation.  Turning to me she asked me to say something to Calum.

            I turned to Calum.  He turned to me.  At this point the corner of his mouth was beginning to turn upwards.  It was obvious he was trying his best not to laugh.  (I should explain that after not being satisfied with my previous short hair cut I had asked a barber to almost shave it the week prior to this appointment.  I was now wearing a hat which Calum had informed me, just moments before walking into this appointment, made me look like ‘a very old lady.’  He was looking at this hat now.) 

            I tried to smile at Calum in a composed manner whilst he was doing his best to stifle a snigger.

‘Cal…’  I started to say but I couldn’t help being distracted by his eyes which were fixed on my hat, ‘um.’ I finished. 

‘Calum.’ I quickly repeated.

Calum was sniggering.

‘What does your mother sound like?’ signed the audiologist.

‘All I can hear is a long s-q-u-e-a-k.’  He fingerspelt the word squeak. 

‘Don’t you know the sign for s-q-u-e-a-k?’  I retaliated.  (Oh – why was I getting ratty on this day of all days?)

‘There isn’t a sign for s-q-u-e-a-k!’  Calum replied quick as a flash.

‘There must be!’

‘Well, yes – there is this sign,’ Calum screwed his eyes up and signed ‘horrible sound’ and then added, ‘but it means all horrible sounds.  There is no sign for s-q-u-e-a-k.’

We looked at one another, daggers drawn, and for a moment we both seemed to forget that we were not alone in the room.

‘You know this is one reason why I want to learn how to speak.  English has so many more words than BSL has signs!’

‘Yes, but,’ I replied, ‘It’s not just about the sign is it?  It’s also the placement, the facial expression, the…’

We were arguing.  I looked up; the audiologist and speech-rehabilitationist were both looking expectantly at us.  What sort of a mother was I to start arguing with my son at his ‘switch-on?   

I forced a smile but was feeling anything but happy inside.  I had missed my lunch, it was now past four o’clock, I was getting a head ache, I was tired and my son had just told me that I sounded squeaky.

‘Calum says I sound squeaky.’  I explained, talking and signing at the same time.

‘Yes, you’re really s-q-u-e-a-k-y,’ Calum finger-spelled the word again.

‘All voices just sound like squeaks at first,’ the audiologist explained.  ‘The brain needs to get accustomed to hearing and making sense of the new sounds.’

I felt relived but also deflated.  Once again I’d been expecting too much.  I knew that.  I knew I was secretly harbouring unrealistic hopes.  I felt angry and frustrated with myself; why did I never learn?  I was my own worst enemy.  The speech-rehabilitationist handed out sheets of paper with listening exercises.  There were pictures of everyday objects like a piece of pizza, a portion of chips, a rabbit (live not cooked). I must say the words and point to the pictures.  Later I would just say the words and Calum would point to the pictures. 

Driving home we were distracted from our thoughts about the ‘switch-on’ by two other patients to whom we had given a lift.  After we have dropped them off in Peterborough Calum sat beside me in the passenger seat. 

‘Do you fancy tea in McDonalds?’  I signed.  (I didn’t fancy cooking when we got home.)  Calum nodded his head. 

As we entered an almost empty McDonalds Calum grabbed my arm.

‘What’s that?  What’s that noise?  Oh! There are lots of noises - what are they?’  He signed.

I looked around; the restaurant was almost deserted apart from a man reading a newspaper in the corner.  I listened but didn’t understand what he meant. We sat down.  And then I heard.  The restaurant is also a drive through; as each order becomes ready a faint, high-pitched alarm sounds.  There are also other alarm sounds, not loud ones: quiet ones.  I assumed these were warning alerts that food is ready or that a food item has reached the required temperature.  I’d never heard these sounds before.  I turned to Calum and explained.  He nodded his head in comprehension.  I looked at him as he ate; from now on his world would be different.  But would it be changed for the better?  Would he hear all the sirens, whistles and clicks but nothing with meaning?  I was tired.  I get depressed when I’m tired.  We drove home.  I unlocked the front door.

I’ve shut the front door and we are still standing on the door mats I lay on the wooden floor to save from the worst effects of the wet, winter weather.  Calum is trying to make sounds;

‘K,k, k Calum.’

I stare at him; he has never previously been able to pronounce a hard ‘c’ or ‘k’ sound.  He was given the name Calum but has never been able to pronounce it.  Until now.

‘Ah, bee, k, k,’

I realise that he is trying to go through the alphabet and make all the speech sounds associated with it.

‘K,’ I say the hard ‘c’ sound back to him, ‘But remember - although it makes a ‘k’ sound, it is called the letter ‘C’ .  Do you want to make the sounds of the alphabet or say their names?’

Calum makes the sign for both. 

And so, for an hour, we stand beside the front door, both exhausted but also absolutely stunned that Calum can suddenly make the sounds he so desperately wanted to.  I can’t quite take it in.  My head is banging. When we get to the letter ‘S’ Calum is able to vocalise sssss.  The hissing snake or ‘S’; the letter which is depicted as a snake in children’s phonics books.  As a small child the hissing snake had never made any sense to Calum.  He knew it stood for the letter S but he never realised that snakes make a hissing sound.  He saw the letter S purely as the shape of the snake.

‘Pen-kill,’ Calum takes something from the basket by the front door.

‘What?’

‘Pen-kill.’

I prise apart his fingers and in the palm of his hand is the stub of a pencil. A pencil.  Pen-kill.  Pencil. 

There are tears coming into my eyes.  I don’t want Calum to see how I am reacting. 

‘In the word pencil the ‘c’ is soft like an ‘s’.’  I explain.

‘Really?!’  Calum exclaims.

He runs up the stairs to his bedroom and computer.  I remain standing by the doorway, the pencil still in the palm of my hand. 

Sometimes, just sometimes, we get far more than we ever expected. 

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