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, verysorry 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