Children, parents, and professionals in partnership |
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Family Stories: James C's Story James C
Right from the time James was diagnosed as deaf we were determined that he should learn to talk. We didn't really know how! We met with many parents of deaf children who had grown up orally and they were a huge source of inspiration. We strongly believe that you need to teach a child to listen and that an implant or hearing aids are only part of the treatment. This entails a lot of hard work. Thank goodness we were put in touch with AV UK. Since James was 10 months old, we have been visiting AVUK weekly in Oxford and following an Auditory Verbal program. For James and for us AVT was the best possible way to teach him to “listen” and “hear” and has been a total lifeline. AVUK is an amazing centre which has inspired and motivated us throughout all the stages of James' early years. James is now almost 5 years old, attends a mainstream school [is the youngest in his class], reads and writes, has many friends and is an extremely happy, wonderful little boy. But although AVT has enabled him to listen and talk and be fully integrated, I believe it has equipped him with many more skills as well. It has taught him to concentrate, made him interested in taking part in things, hungry to learn, taught him discipline and made him an all round ‘good learner'. When we were told our child was deaf, we became so immersed in the whole process of getting hearing aids and being assessed for an implant, we didn't actually think that getting two implants might have been an option. One day I read an article from a parent of a bi-lateral child, and immediately thought “What am I doing? Why hasn't my son got two implants?” As an advocate for our child, we felt it important not to be guided by what is available or what is the status quo. We needed to decide what would maximise the effectiveness of our child's opportunity to access sound. For us it was obvious: two would be better than one. The decision to implant James a second time was certainly a harder decision for us as the marginal benefit of an additional implant is less than the first. But that said, it was not a hard decision to make, given the benefits. These benefits may not be as apparent as the benefits of his first implant, but they will become increasingly important and useful as James gets older. With the second implant it was like starting all over again! My heart sank at the thought of such an uphill struggle. He was wearing both implants all day. For short sessions he would wear only his new implant and we would play “sound games”, with the very specific objective that James was aware of i.e. we were teaching him to hear. Again, he had to learn sound by sound and he did not recognise anything at first – being unable to distinguish fundamental Ling sounds. He has now been bilaterally implanted for 3 months and his progress is amazing. He can now wear his new implant alone and converse at close to the same level as with his original. Recently James got a bad ear infection on his left hand side. He would not wear his implant for 5 days, saying it was too loud and “buzzy”, and it hurt. I was terrified and I thought that there would be a permanent problem. James is a purely oral child, he would not be able to cope for even the shortest time if he could not hear. I cannot express my relief that he had a second implant over this period. We are so proud of James and what he has achieved, and although we know it will not be an easy ride we are very excited to watch him continue to develop and grow. Thank you AVUK. Videos of James C
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Our son, James, was born with a profound congenital bilateral hearing loss of unknown cause. He was diagnosed at 8 ½ months and began wearing hearing aids a month later. He was implanted on his left side, which was his marginally worst ear, at 22 months in Nottingham and activated at 23 months. He received a second, bilateral, implant in March this year.