Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 --- You wrote: Thank you , I appreciate your message! Could you tell me how much hearing loss your son had to have to get cochlear implants? I'm just curious...I've been told that the hearing loss must be profound as in almost no hearing, is that true? --- end of quote --- I attended an all day conference at DHMC sponsored by Cochlear, one of the cochlear implant companies. It was excellent and our own Flanders gave an fabulous talk on legal stuff. The folks at Cochlear said that more important than the level of hearing loss (which can be at a severe level) is how the child does with hearing aids. If they're getting benefit from their aids, they may not be an implant candidate. But the level of hearing loss criteria has relaxed down to a severe hearing loss now. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Thank you for your support, I cannot tell you how good it is to hear from someone else, I feel as though this board is like a life preserver. I really felt quite alone. > Hi Regina, > Thanks for the intro. Unfortunately your story is all too common. The medical community has much to learn about listening to parents' concerns about their children. There certainly are good doctors and nurses out there, and we have come a long way in the past few years, but more education is needed. > My son Nick, is 14 and our family signs. Of course, he can also read and write, but his speech is very hard to understand. Hearing aids did not help him, and we decided against the cochlear implant when he was young. > He is very happy using sign language and being deaf. There are many challenges and decisions ahead for you and your family, but much joy as well. > :)Charlotte > > Another newbie > > > > My name is Regina. My son is deaf. He failed his newborn screening > but when we went for a follow up ABR a few months later he passed. > > When he turned one everyone kept telling us it was normal for boys > to talk late. When my son was closing in on his second birthday he > still only said three words. My pediatrician was worried and > referred me to Early intervention. All of the people we dealth with > in the EI program were very nice. The only complaint I have is that > every time we suggested our son had a hearing loss it was suggested > that we were in denial and that my son had some sort of mental > difficulties. > > I kept going for hearing screenings but the problem was the only > tests my son kept getting were behavioral -- try to get a two year > old boy to respond " appropriately " . Each test kept showing only a 25 > dec. loss which kept being attributed to fluid in the ear. December > of last year my husband and I decided that we would find out once > and for all and not by in office machinery or by behavioral tests > but by a real ABR whether my son could hear and how much. I had to > argue with my pediatrician to get a referral. She actually told me > that the equipment they use in the office is the same thing an > audiologist would use. (This equipment I'm talking about is the > instrument they put in the ear to see if you have an unobstructed > canal). > > Needless to say we waited months to get in to the place I knew would > give a thorough test. They didn't even have to do the ABR. My son > was conisistent every time on the behavior test. We went to an ENT > and got the same results. So we found out my son was deaf for > certain this past June. > > The dissapointment we feel at his not being diagnosed sooner and > therefore getting hearing aids, learning sign language etc. is > inconceivable. He is now 3 1/2 years old. He has 65 dec. loss in his > right ear and his left ear isn't transferring noises properly with a > 55dec loss. He was fitted for hearing aids in August and has been in > the early intervention program since he was two. He started > mainstream pre-k in Sept. He has a part-time teacher of the deaf and > the teachers take turns using the FM system. > > He is talking tons now (not in complete sentences) and knows a lot > of signs. I was teaching him signs previously but I didn't dive into > it because I kept getting the perception that hearing wasn't my sons > issue. > > I am so happy to have found this list-serve. I know only a few deaf > people and can't find anyone locally in the same situation. I look > forward to hearing others stories and maybe gleaning some > information on different ways to help your child excell and be happy > with themselves. I'm sorry I babbled on but hope someone will relate > to my story as well. > > > > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2005 Report Share Posted August 11, 2005 In a message dated 8/11/2005 10:43:53 A.M. Eastern Daylight Time, cbagadiong@... writes: By the way, what's a TOD? TOD = teacher of the deaf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2005 Report Share Posted August 11, 2005 <<Someone recently wrote a 9-page response to a newbie >> Chereie, That might have been me, because I do tend to ramble on. So sorry, I'll do it again and again. (grin) Welcome to the list! There are moms and dads here, but it seems to be heavy on the mom side. We have some parents who are professionals in the D/HOH field as well, but they're here as parents not consultants. It's a parent-to-parent thing. Personally, I love hearing all the different points of view. Gives me a chance to consider things from new angles. I'm Jill (there are two Jills on the list, a first for me since I never meet anyone with this name!). I'm the mother of two and have been married to my furry beast for 23+ years. My eldest, Ian is almost 15 and has a deteriorating hearing loss. It's at the moderate level for now and he is oral. My daughter is 11, hearing and hormonal as only a preteen can be. My little ones now look me in the eye and I have the smallest feet in the house. You certainly have your plate full right now! This is a great place to come for advice or support for things about your Grace's hearing loss. Some parents here know about the other issues you mentioned, so you may find pointers for those as well. The lingo will become second nature very soon, so just ask if you see an acronym you don't recognize. It sounds like you are checking into everything that I can think of. We also went through the medical rollercoaster to diagnose everything. I think most of us have been through a version of that. By the time we got to the geneticist, I had a folder of test results for him to use in diagnosing Ian's syndrome. (Goldenhar) Depending on the syndrome they diagnose, there are programs and hospitals that specialize in them. Montefiore here in NY is a cranio-facial center, and Ian's syndrome is one of those. It was amazing to find them so close to me (okay, 2 hours away, but still close enough) I'm sure you can find info and support once you have an idea which syndrome you're dealing with. There are letters on the Listen-Up site that were used by parents to get their insurance companies to pay for hearing aids. We didn't win that, but honestly I gave up trying. It can be done with the written support of your doctors. Take a look. I plan to try again with Ian's new aids. Yes, you can get loaners to try out aids before purchasing. Each audi/hosptial seems to have their own rules for this. The place where we got Ian's aids would have sent us a single type of aid to try -- one kind at a time for free. If we had wanted them to sent 2 or 3 at once, then we would have had to purchase one set. We'd then have kept whichever ones he liked best. I don't know about using loaners to see if aids will give any benefit. Some hospitals have a sufficient supply on-hand and have loaned them to families while they get their own. Ask your audiologist or ENT about that, they'd know more about local resources. As for help paying for aids, most of the ones I know base their help on financial need. The one exception to that is our local Lion's club. The chapters are locally controlled and each decides what kind of community service they'll focus on. Ours supports hearing and vision issues for kids. We've been told that our income is not the deciding factor. They'll help families with more dire needs first, but if we have a need and they have the funds available, they would be delighted to help. They have also been known to fund raise for a family who needs help. They've run everything from spaghetti dinners to raffles. So, call your local chapter and see what their focus is and if they'd be interested. You might be pleasantly surprised. If you feel shy about asking for help, you can have a friend call for you. Sometimes friends are better at this than we are, I know mine are. However, given everything your family is dealing with, you may very well qualify for help from places like Job's Daughters. (_www.thehikefund.org_ (http://www.thehikefund.org) ) That is the daughter's organization within the Masons. It is an organization where kids fund raise to help other kids. The actual name is Hearing Impaired Kids Endowment Fund. (HIKE) Last year they raised close to 400K and that is used to buy aids for children. There is an application form on the website. So, now you have another 9-page post to add to your collection (grin) Welcome to the list! Best -- Jill Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.