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 26th 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. 
Catch the next instalment only on PDDCS News. Read the other fascinating entries here
Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s