Parent looking for experience
RichardN | 20/06/2020 10:22:44 |
123 forum posts 11 photos | Morning all, I suspect many here are hearing aid users, and potentially may be some cochlear implant users and those with sign language too. My son (2.5) is deaf, has aids but currently being assessed for cochlear implants. His means of communication is via sign language (BSL, taught via some teachers, and I’ve been at evening classes for near 18 months now, half way through lvl2) but is trying to start speaking. wondered if there are any users with comments about cochlear/aids in the workshop, cochlear implants on motorbikes, issues of using ear defenders with aids, resources for ‘technical’ sign language etc. No idea if my son will follow my interests in the future, but he’s always interested and would be nice to know and be able to ‘discuss’ these things! a niche request I appreciate- happy to talk via private messages if preferred...! Richard
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Samsaranda | 20/06/2020 11:05:01 |
![]() 1688 forum posts 16 photos | My wife has a cochlear implant, she is profoundly deaf having progressively lost her hearing due to meningitis which also left her with epilepsy. She lost her hearing over a period of 30 years with gradual deterioration until finally waking up one day with no hearing at all. During the progressive loss of her hearing she attended lip reading classes so that was some compensation for the loss. She had her implant fitted 11 years ago at St. Thomas’s Hospital London, the team there are fantastic, she had to have numerous tests completed before the go ahead was given for the operation. In adults the NHS will only fund one implant whereas children can have both left and right at the same time, this is due to the expense of the procedure, I think the total costs when my wife had hers fitted was in the region of £36,000. The operation has transformed her life and she says if anyone is offered the operation then go ahead with it , they will not regret it. I have a moderate to severe hearing loss caused by exposure to gas turbine engine noise without hearing protection when in the Air Force, I wear two strong hearing aids but still struggle with hearing, particularly high frequencies, women’s voices are generally high frequencies, but we won’t go there. In the evenings my wife is always complaining that I have the volume on the tv too loud, this is from someone who is profoundly deaf with zero hearing without the cochlear implant, I think that demonstrates how successful cochlear implants can be. If I can be of any further help then pm me. |
Neil Wyatt | 20/06/2020 11:56:35 |
![]() 19226 forum posts 749 photos 86 articles | Not a direct answer to your question, but in the future, I am interested in learning Makaton.The reason is it opens a door to communcating with a lot more people. It's a simplified approach to sign language, with differences according to location (the UK version uses symbols from BSL). The idea is that it's designed for use by a wider community, such as people with learning or social difficulties not just deafness. My brother uses it working with people with autism. It's often used alongside speech but someone with a basic knowledge of Makaton can communicate with someone who speaks BSL. It's reduced vocabulary makes it useful for carers etc. as well as focusing on the needs of those who might struggle with a large vocabulary or limited movement. Some people would like it to be taught in all schools to at least a basic level; I hope the benefits are obvious. Neil |
RichardN | 20/06/2020 14:12:01 |
123 forum posts 11 photos | Thanks for the comments.
Neil- certainly aware of Makaton, and decided against learning that for a couple of reasons while fully appreciating its benefits: I think for those whose communication may be somewhat limited and difficult for cognitive or other reasons it is a simpler form of language- designed to be easy to learn and useful to get enough message across, while not necessarily offering the full range of grammar, syntax, lexicon etc that BSL offers. I decided BSL would be potentially a longer term option for my son for the future- he’s not yet 30months old but starting to sculpt sentences himself- and while he is complicated medically we aren’t anticipating particular obstructions in learning. I would certainly not knock Makaton- are you also aware of SSE (Sign Supported English)? Uses BSL signs (more widely recognised) and thus also overlaps with Makaton but keeps the grammar of English. Which means you can speak English and sign SSE- a good halfway option- but anything to support communication for those who aren’t able to hear/speak English I encourage these days! Dave- great to hear she’s so positive- we have heard some mixed messages including from a profoundly deaf lady who has two CI, one of which failed from day one the other which never responded as well as hoped, yet she would still encourage despite her experience. I will send you pm later (in supermarket car park currently!), thanks.
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Paul Rhodes | 20/06/2020 14:44:33 |
81 forum posts | Richard I would encourage C. I.s and offer this anecdote. I was involved with training a 12 year old boy at our kayaking club. His single device was relatively new and he was clearly slightly smothered by a naturally concerned mum. His confidence blossomed as he was able to participate in this adventurous sport and pick up much of the nuancing of leg pulling and joshing which makes up the social fabric of such endeavours . His mother's delight at this surfacing from isolation and delight in his normalisation was a pleasure for other club members to enjoy. Although being banned from jumping off the pool diving board, he joined others who tested this rule. On the point of jumping o his mother shouted down the pool to get off the diving board. He looked up having heard her , tapped his device implying non hearing and with a shrug of the shoulders dived in. This mischievousness was all the more comically normal when considering that the device has an LED showing its function and it was decidedly green. If it were my lad and I was advised that the CI was available I would pursue it. I am aware that there is a sensory politics movement and offer no comments other than my anecdote. |
Nick Clarke 3 | 20/06/2020 16:34:12 |
![]() 1607 forum posts 69 photos | I work with students who are blind or visually impaired, but we usually have a few who have varying degrees of hearing loss as well (Usher syndrome or Norries disease in the main) 2½ is quite young for CI so I suspect the clinicians must feel that is the most suitable way forward, provided your son is suitable. A few minor points from my direct experience -
Edited By Nick Clarke 3 on 20/06/2020 16:37:53 |
Dave Halford | 20/06/2020 18:07:28 |
2536 forum posts 24 photos | Posted by Neil Wyatt on 20/06/2020 11:56:35:
Not a direct answer to your question, but in the future, I am interested in learning Makaton.The reason is it opens a door to communcating with a lot more people. It's a simplified approach to sign language, with differences according to location (the UK version uses symbols from BSL). The idea is that it's designed for use by a wider community, such as people with learning or social difficulties not just deafness. My brother uses it working with people with autism. It's often used alongside speech but someone with a basic knowledge of Makaton can communicate with someone who speaks BSL. It's reduced vocabulary makes it useful for carers etc. as well as focusing on the needs of those who might struggle with a large vocabulary or limited movement. Some people would like it to be taught in all schools to at least a basic level; I hope the benefits are obvious. Neil Cbebbies 'Something special' Makaton lessons eveyday |
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