Shown in May, The ‘Beyond Boundaries’ BBC 2 programme ‘Across the Andes,’ was a brilliant series and a wonderful achievement by all who took part. The programme put over well the communication difficulties of the deaf and hearing impaired on the trek, but apart from using a variety of hearing aids there was no particular mention of Jeremy’s quest to acquire speech resulting from his profound deafness and the significant difference the cochlear implant had made in his quest. One difference between the hearing impaired team members and Jeremy was that the hearing aids they used were not water resistant, so they had to take them off in the wet conditions whereas Jeremy’s Freedom processor held out. It only went slightly wrong once and putting it in the dry pack soon put it right. Isn’t it about time the hearing aid companies made water resistant aids? Jeremy uses one for football and it always goes wrong in the rain. This is more than an irritant as he plays at quite a high level. We are so relieved Jeremy now has his own Freedom processor (Cochlear UK had lent him one for the Andes trek) which, as the Andes Trek proved, is almost waterproof, especially as he says the sound is better too.

Jeremy was born profoundly deaf into a hearing family in 1986. He has two older brothers and both my husband and I are musicians so the diagnosis was all the more painful and bewildering. However the fact of us being musicians, we think, has helped us with Jeremy’s development. It has made us very aware of the value of hearing and how it is possible to develop listening skills. It is wonderful to see and hear about the achievements of infants and children with cochlear implants now and that music as well as speech has become a part of there lives. I would love to have had the chance to help Jeremy with an implant when he was little, although I did try as much as possible just with hearing aids.

During Jeremy’s first few weeks we noticed he wasn’t reacting to some sounds but we didn’t think much of it. However, gradually doubts and worries about his hearing crept in. On one occasion I can remember letting the car door bang and with Jeremy not reacting I said to my friend, “I suppose he can hear.” She replied, “Oh that comes later, don’t worry,” or words to that effect. I think she must have been referring to the 8/9 month hearing tests or conductive problems. My fears were briefly allayed but it shows how little both of us knew about hearing loss although we each had 3/4 children. I was not entirely surprised when he failed his standard 8-9 month hearing test and was becoming increasingly worried and frightened. The final evoked response test was the nail in the coffin. Profound deafness. I felt numb with a horrible emptiness. I had hoped that if he had a hearing problem it would be a partial loss which could be rectified with hearing aids. We immediately asked about the future and the specialist said he would have to wear a body aid. We were not told much else at the hospital. Later an audiologist, in response to our enquiries, said that he would talk. I think he was just trying to make us feel happier and soften the blow, allowing time to reveal the ghastly truth but we could tell that the teacher of the deaf, whom we met soon after, was very doubtful about his speech development. We were determined to stimulate Jeremy as much as possible and do all we could to help him talk; being pro-active helped us cope. Fortunately, Jeremy was a happy, outgoing infant and he had very good eye contact. These qualities helped so much.

At one year old Jeremy had a double body hearing-aid; it was very crude but anything less was not powerful enough. However, he didn’t reject it and wore it all day long and began vocalising straight away. Our teacher of the deaf suggested that we used ‘total communication’, in other words stimulate him in every possible way including signing and talking to him. Jeremy was happy to mix with other friends’ children at local playgroups and at a special playgroup attached to an infant school which had a unit for deaf children. He had happy pre-school years during which our teacher of the deaf visited us regularly. My husband and I started to learn sign language and we passed on to his brothers, other family members and anyone else who was interested, what we learnt. We did experience problems learning to sign but also had a lot of fun and it is nice now being able to communicate a little with deaf people we meet occasionally.

Before he was two, the ToD (Teacher of the Deaf) told us about a new phonic ear hearing aid which had a radio aid. The local authority would only fund this if we had a recommendation from a top audiologist and this led to our first visit to the Queen’s Medical Centre in Nottingham. We asked him about cochlear implants but we were told that Jeremy was not eligible at this stage. I asked if I could visit each year for check-ups, to which the specialist agreed. The phonic ear was a tremendous improvement. It gave Jeremy better sound, it was less bulky and we could talk to him at some distance using the radio aid. Rather useful when an excitable two year old starts to climb high up a tree! No other deaf children we knew used a phonic ear regularly. They were doing sufficiently well with post-aural aids and their parents preferred the look of them.

Jeremy’s infant school was the one which had a mother and baby group for deaf infants attached to it and to which Jeremy and I went along. The school gave him an excellent start and the deaf children were integrated very well into it. He started to have speech therapy on a weekly basis there. I helped him a lot at home with this as well as his simple English and basic number work. So that he was not cut off from his local friends, Jeremy spent one afternoon a week at his nearby school even though some of his regular teachers didn’t think it was a good idea. They were concerned that it might be unsettling for him. However it proved to be very beneficial, especially when he had to make the transition to junior level, because the junior school attached to his main infant school did not take deaf children. Also another school we had looked at because it was a feeder school for a comprehensive which took aural deaf children in the area, having agreed to take Jeremy turned him down at the last minute. I was shattered that the door had been closed in Jeremy’s face. I got over this and the natural choice seemed to be his local school, which he was already familiar with and where his brothers had been. He would be the only deaf child attending there and this fact worried the experts. They felt he should have contact with other deaf children. We had some sympathy with this view but the only mainstream school with facilities for the deaf was miles away. We felt that as Jeremy was gregarious and had kept up his home links, provided he had suitable classroom support, he would be happy at his local school. Also the headmaster said he would be delighted to have Jeremy. Changing school was always hugely stressful, trying to get agreement with the local authority on the school and the support, let alone finding a suitable school that would have him.

Jeremy loved being at the school near his home and where his brothers had been. He could talk a little and his ToD started up a signing club. Soon all his class were picking up sign language! As a family we used sign supported English but the ToD may have used some BSL with Jeremy.

Speech therapy continued once a week and at one stage he had to miss swimming for this – a great shame because sport was the main way in which Jeremy could interact successfully with his classmates; it gave him confidence. His lip reading was developing and by now he was using post aural hearing aids which were powerful enough, plus a radio aid in the classroom, where he was supported with a ToD and a classroom assistant. I helped as much as possible; this was therapeutic for me as well as being essential for Jeremy but it was also very demanding and I was terribly anxious about interfering with the teachers’ efforts.

To aid communication with the teachers we used a ‘home school’ book in which the teachers and myself wrote to one another. He did quite well with his reading, partly because there were set reading schemes. From 11 years onwards, it became difficult to find story lines which matched both his age and language level. If there are any budding writers out there, here is an opportunity for you!

Despite the frowns of some, Jeremy started his music here learning drums and saxophone. We thought he would be most receptive to these and they suited his personality! This was really how ‘Beyond Boundaries’ started as the BBC discovered that he learnt the saxophone. They must have kept this on record because about nine years later, they phoned him to see if he would be interested in the trek. So music took Jeremy to Ecuador as well as helping his development!

Despite everyone’s best efforts, however, the gap between Jeremy’s work level and his peers was widening. We were hanging on as Jeremy was so happy with his social scene and whilst he was falling behind, he was still learning and receiving plenty of stimulation. We believed that if he could survive in the hearing world now, he was more likely to as an adult. Also he was a challenge to those who could hear and by being amongst them he was naturally making them deaf aware. Provided he was happy, learning, contributing and not holding others back, we did not want him segregated and moved away from his home and local school.

Part two coming soon...

Read more about Beyond Boundaries here