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The Older KidsThere is a group of relatively sad parents whose hard of hearing children are now young adults. Periodically I hear from these parents because the child is in a drug or alcohol abuse crisis, which either has smoldered through the teens, or erupted after school. The parents were doing their best, and were told not to expect problems from the minor hearing loss. They feel frustrated and guilty, and some begin mourning the hearing loss, or the parental role. Under-labeled, Under-serviced.When/if these children were diagnosed with a mild or moderate hearing loss, the acceptable level of hearing loss a child could cope with was considered to be 25 dB. A child had to have a hearing loss around 40- 50 dB before they were sent to an audiologist and prescribed hearing aids. Bureaucrats fixated on the better ear as the only ear, the best hearing determined the needs. My son who has a sloping audiogram from mild to severe in his good ear, and a profound loss in his other ear was considered to have a mild hearing loss in1986. Part of the reason for the utter failure of the system to improve reading outcomes for hearing-impaired children lies in the totally inappropriate under-labeling to save money. We have to examine each child for their abilities and disabilities, and provide services based on the child's evidence, and not put the child in a chart at some point to dispense some appropriate services.The other thing which was going on was the great debate over speech or sign. I think quite probably that entire generations of hard of hearing children and deaf children went to school without any personal gain because the energy of deaf education was utterly wasted on the debate. Scientific, Educational Change of Threshold of ConcernAround 1993, the acceptable level of a hearing loss for a child was restated by Dr. Richard Sewald at the University of Western Ontario, and others, as being any hearing loss was unacceptable. Unfortunately the medical profession has always considered surgery or drugs something within their power to prescribe or provide, and the need for hearing aids is an admission of the failure of the medical profession to fix the hearing loss, a hopeless situation.. Myths Establish StandardsEstablished organizations of parents of deaf children, or professionals working with deaf children taught that only profound deafness was important, when the reverse is true. Profound deafness might be intellectually stimulating to develop better technology like the cochlear implant, but sticking hearing aids in deaf ears does little. It is far easier to provide better hearing for the moderate or severe hearing loss, but the parents and the professionals perseverate on profound as meaningful. I noticed when researching on behalf of Reid that all the research was about deaf children which certainly simplified the statistics, but the deaf children are not the statistically meaningful part of the whole spectrum of children with hearing problems, the children with mild losses are, and yet little research was done. Dr. Carol Flexer was the first to bring up the issues of the needs of children with mild and moderate hearing losses. Part of this was a political grab for the limited number of goodies
for Deaf people, and also protecting the jobs for Deaf people by making sure the
hard of hearing were not well educated either. The Older Hard of Hearing Children had almost NO AdvocacyThis has also caused literally millions of parents of hard of hearing children, myself included, to be really annoyed when help is asked for, and the child's hearing loss is trivialized by the medical, educational or social support systems.. I had a phone call with a high ranking government person to try and change this: I lost because I was an individual while Voice was a group. Voice for Hearing Impaired Children told the government that as Bill C-72 was being amended, that a child with a threshold of 50 Db would probably be a good place to lay the line for some services. 95% of Voice's membership is parents of children who are going to get cochlear implants, they do not and cannot represent the hard of hearings rights on SEAC because they effectively exclude most of the hard of hearing children. Many Parents Received Inappropriate AdviceChildren who have hearing losses who needed hearing aids and did not get them, and other children who had hearing aids but no FM, and children with hearing aids probably went through their entire childhood hearing little because of the technical problems of earshot and hearing aids. The hearing aid companies are culpable in this too, because they told the parents that hearing aids would solve the hearing problems. The parents innocently bought the hearing aids to help the children as much as possible.The parents of the children who were deaf enough to get hearing aids but not deaf enough to sign, definitely believed that spending the money was going to provide hearing for the child. What does the school system spend money on, anyway?The school system wanted to spend no money on acoustics, or children with hearing problems who are statistically very common when all the levels of hearing loss are factored in, so they came up with preferred seating as a perk for the hard of hearing child, which was appropriate only as long as the teacher was facing the class in one place, but preferred seating was a cheap perk. I have never seen any reference to anyone assessing preferred seating as something which worked, it was probably an educational myth. The teachers might have had other students who did not seem to hear, and made it through their classes, so many teachers were mired in complacency. Some teachers refused to use the FM's because of fear of radiation. Many children with hearing losses refused to use the FM's because they were bulky, ugly, and marked them socially as deaf. The sad truth is that every hearing aid should have come with an FM, and lessons on how to use the technology properly. Happy Adult?So we have a group of young adults who probably have excellent natural lipreading skills which helps them to get by, but who are withdrawn socially because of the isolation of an unremediated hearing loss possibly even if they had hearing aids, the fatigue creating a natural path away from other people to a less tiring non-listening world. The unrelenting sadness of the isolation sometimes leading directly to drugs or alcohol abuse. Jamie MacDougall, a psychologist for the Deaf in Montreal told me long ago that life was better after school was finished because the hearing-impaired person could choose what they wanted to do, instead of fighting to get through school. This is probably true, but I also think that the goals and outcomes are very limited with a hearing loss. Then I think about Howard Hughes... So What Can You Do now?If your young adult has older hearing aids, try to replace them with the best you can afford. Get an FM too. It is never too late to learn about earshot, and start making sure any person who does not hear well has the best possible opportunity to hear by having speakers move closer to them. Listen critically to your child's speech, perhaps using a tape deck. If there are speech problems, then finding a speech pathologist will help. I was listening with Reid to a beautiful lady wrestler on American Gladiators who happens to be deaf, and has speech pathology at her choice every day. Her sign language also gives her and her team-mate an edge in the noise of competition, so she's completely bi-lingual. You have to put the miseries away about not ending up doing your best for the child because you followed the wrong directions. Yes, you could have done a more scientific job if you had known, but I know many parents in these boots and they were running hard and fast, or they believed what they were told. And I bet you still love your child, and that is all that counts at the end of the day. You love your child. From the day the child was diagnosed, the child accepts increasing responsibility for self-maximization. When the child is an old teenager, or a young adult, your role as commander is finished, and you step down to a consultative role, which pays equally well in love, and you have a choice about whether you want to be still involved, or on the outside looking in, and your information is still important, but you are not frantically trying to solve all the problems. Of course, if the child is going through getting rid of the hearing aids, which is traditionally acceptable, focus all your energies for one more battle. The technology of hearing aids today is so much better. There is nothing different between being a child with a hearing loss and being an adult with a hearing loss. If you cannot hear, you cannot hear, your age makes no difference. But traditionally the mild moderate hearing loss group were expected to try and get rid of the hearing aids without parents enforcing them. And all the same things happen from isolation to family members getting tired of repeating, and explaining. Sometimes the problems of being hard of hearing are just too overwhelming. If it is possible, get a social worker for your young adult. It does not have to be a frequent contact, but can be a terrific resource. Also your child with a mild hearing loss might actually be quite hard of hearing, as in Reid's case. Some international Resources for Drug Abuse.and from Rochester Institute of Technology and from my e- friend Jamie Burke at about.com, a nice page of links
about deafness and drugs
I would like to thank all the
people who made webs for helping people, especially the web slaves and Emanuel
Sferios at http://www.dancesafe.org who
did all the work for the brain on Ecstasy, putting it out in the web to be
copied.
Family History of Hearing Loss?From the work on the human genone, I think we are going to have much better etiology of deafness in the future. People who have a genetic tendancy to produce children with hearing problems will be able to decide whether they will avail themselves of genetic counselling and possible selection which is an intensely personal choice. The ramifications of genetic testing and knowledge are huge, and have great potential to be abused by employers and insurance companies. It is a tough question because we may learn more from sharing our knowledge of our hidden or forgotten family histories, but with the wrong people at the helm we will loose many individual rights. If you know why your child has a hearing problem, you must tell your child before the child becomes a parent themselves. I would like to thank all the people who made webs for helping people, especially the web slaves and Emanuel Sferios at http://www.dancesafe.org who did all the work for the brain on Ecstasy, putting it out in the web to be copied.
-PAM Candlish
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