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Bearly Yours Archives
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Re: Hard of Hearing SonFrom: mama hohbear alias PAM CommentsI think of a circle which began with Dr. Daniel Ling who always had patience for parents of HI kids. Daniel help me with Reid, at a time when he was denied services from most other people. In return for his help, I try to help you and the other parents with you. In return, believe it or not, you will help other parents too. I am so glad that my book helped and is helping you. Thank you for taking the time to write me. PAM
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| cookie bite loss | From: supahedgehog@hotmail.com CommentsJust reading through posts and thought I'd hunt for a little support here...My dh has a genetic hearing loss that is described as a cookie-bite loss (looks like someone took a "bite" out of his audiogram) and my dd10 has the same although not to the same degree. She has good hearing at most points but has a sudden dip in her audiogram at 1000 mhz. DD10 is a very active kid (some have suggested she may be ADD) but her audiologist says that her distractablitity is a result of her hearing loss. She has such a hard time focusing on conversations when there is background noise. Audiologist also says that for now there is no point in getting her hearing aids - he wonders how much they will help. DH just got hearing aids this past Tuesday (at 33years old) What a difference! And his is only considered moderate loss! Now we'd like to push for our daughter to get hearing aids. Has anyone here experienced or dealt with this type of loss? Edna |
| mild loss | From: skymom_ottawa CommentsHi I have a 3 1/2 yr old daughter, who was diagnosed with hearing loss and speech delays at 2 1/2. They found the loss was caused by severe fluid, so they gave her tubes, but the hearing has not impoved much passed moderate to mild, with one ear being at moderate. Her speech has improved a lot, but she is still only understood by non-family about 50-60% of the time.We are facing the oncoming of Junior Kindergarten this fall, and I am very concerned about her being lost at school. Also we know have a problem while shopping, she is now a lot braver, but as soon as she is out of eye sight/hearing, we can't get her back since she can't hear us calling. We find ourselves shouting at her in public, with strange looks from strangers, but we know she doesn't take the shouting personally, to her, it just means that she can hear us??? Is there solutions for mild to moderate hearing loss in one ear with mild loss in the other? Reading this site has just compounded my concerns about how the school system is going to affect her? Thanks |
| moderate loss | From: elizabeth146@poetic.com CommentsMy husband and I have three daughters, our oldest was just diagnosed at 6yrs old with moderate sensioneural hearing loss. My husband and I are devastated and confused... First of all, the problem went unnoticed until our daughter went to school. She'd always been bright and active, and her speech development was above normal (he is a teacher, I'm a former teacher so we have a point of reference). She started speaking in articulate sentences around 18 mths and hasn't stopped since! The aud. we saw said that if this loss was congenital she didn't see how Sarah's speech would have developed as it has. Also, her ears were screened at birth and we were never notified of a problem. Since birth she has not suffered any bodily trauma of any kind. She has had only one ear infection in her entire life, no other major illnesses. The aud. said it was definitely neurological, no congestion or fluid. Has anyone else experienced a situation such as this? My family doc is clueless, we're trying to get an evaluation by a pediatric ent. at Mass Eye and Ear. In the meantime I've asked my doc to do some testing, she is reluctant, said she has no idea what testing to do...Any suggestions on anything I should insist on? My mom, an RN, said that she's heard of tumors pressing on the aud. nerve, causing sudden hearing loss. Maybe an MRI of sorts?!? I just hate to keep prolonging this, we've been bounced around between docs for 3 mths already and I feel like a horrible parent for not picking up on this sooner. Secondly, the aud. recommended hearing aids and an fm system immediately, the fitting is in two weeks. Should I put that off until we find some more answers with an ent. or not? Are there some types of loss that hearing aids won't help? Any advice would be appreciated, we just dont' know what to do next. Thank you. From: kpcurtin@attbi.com CommentsHi I am new to this sight and just saw your note from a while ago but I felt the need to comment. My daughter is now a 3rd grader and was diagnosed in a similar fashion to your story. I read your history and felt that I was reading about my daughter. Her hearing defecit was picked up in the school screening in the fall of her kindergarten year. I am a PT and could not believe that I did not notice anything of concern. We did have an MRI to r/o any tumor or medically treatable cause. We were told that this was congenital--but our concern was that it was missed in the pediatrician's office as her office testing was normal. So we did have the MRI because we weren't initially sure if she had had normal hearing and then had lost it because of a tumor. Our pedi ENT at Children's said that she had never seen acoustic neuroma in a child our daughter's age--and thought I had been surfing the internet when I raised the question. I guess I was a PT who knew too much yet not enough! We are now dealing with the school to try to implement a 504 plan, the use of an fm system and educational testing to see if other services are indicated. We were told that our daughter would not benefit from hearing aids as her defecit is unilateral and profound. We were told that if her defecit was bilateral that she would be a candidate for cochlear implant. Her reading skills have required a tutor at school and I have never been impressed by her math. Folks have been reluctant to say that it was related to her hearing--I wish I had pushed more when she was first diagnosed. I feel like as she gets older and the work more challenging that I see how much harder it is for her to keep up. I hope that you are all well and feeling supported. Kathy From: pxdougla@zoo.uvm.edu CommentsHello, I am an audiologist in VT who works with children with hearing loss. I totally empathize with your distress at discovering your daughter has hearing loss. It is a very tough time for parents, having to go through shock, grieving, guilt (ALL parents suffer needless guilt, and as you learn more about your daughter's problem, I hope that will subside for you.) To say nothing of learning as much as possible about a very complex subject in as short a time as possible. You didn't say where you live, but I would urge you to continue to work with an audiologist, preferably one who sees a lot of children. A referral to an ear, nose and throat MD is standard practice anytime an audiologist finds hearing loss in a child. I hope you find a doctor who is comfortable with children and families with hearing loss. You should feel comfortable asking your questions and getting the information you need, both with the audiologist and the doctor. I feel it is appropriate to fit a child with moderate hearing loss as soon as possible after identification. In VT, the consumer has a 45 day return privilege (with children, sometimes longer, ask) so if one kind of hearing aid doesn't work well, you should be able to try another. FM's are great because they carry sounds from the microphone directly to the child's ear or hearing aid, taking care of distance and background noise problems. However, remember that even the best hearing aids cannot eliminate background noise, nor can they restore hearing to "perfect". Also, it sometimes takes a long time for anyone to get used to their hearing aids. Have faith, work with your audiologist, and be encouraging and optimistic with your child. Sometimes digital hearing aids are preferable for children because they are more flexible. I feel it is best to fit children with behind-the-ear hearing aids. As PAM has said to others, remember that you still love your child just as much if not more than before, and she is still the same child. Best of luck as you begin this journey. Priscilla Douglas From: workinmomof2@webtv.net CommentsHi Elizabeth my name is Michele I have two children that are HOH CArly mu oldest was 4 when she was diagnosed she alsowas and Is very intelligent and tricked alot of people for a long time... I would go ahead with the fitting get her fitted with aids as soon as you can the sooner the better. Have you had an ABR test done on her? Also go to a childrens hospital (Dont they have one in Boston? ) Thats where ive found the most help.... There they could do genetic testing and that way rule out if It was or not genetic and get your answer solved. My husband And i chose not to do the testing but it might help you. if youve read the past postings I may be repeating myself get PAMS book through your library or better yet buy it to have a referance at all times.. It helpedme tremendously it has so much great stuff in it. Im sure that everything will be just fine your daughter has an excellent advantige having two teachers at home helping her. If you ever want to talk you can email me at workinmomof2@webtv.net. GOOD LUCK Michele From: candlish@sentex.net CommentsHi Michele, So glad you empathised with Elizabeth...we both know how she and her husband feel right now, and we also know the power of getting great information to get going. Thanks once again for your insightful comments, and great reference for Not Deaf Enough. How are Carly and Megan and you?...Reid has pneumonia after going camping for a weekend with a cold but is already on antibiotics, and ventolin. Thanks for your prompt offer of support for Elizabeth. You are such an important part of this parents in this together helping each other. lol PAM. From: workinmomof2@webtv.net CommentsHeya PAM doin alright here Megan has begun adjusting to her hearing aids but seems to hear even less when shes not wearing them. She even puts them in and takes them out on her own. She tells me see im a big girl I can do it.... Carlys grades are getting significantly better now that I have pushed the issue of her wearing the fm in school the teachers decided amongst themselves that because Carly ( 6 years old mind you) didnt want to wear the fm because the other students didnt wear one that it was okay for her to go without... After me bringing the IEP to the open house where it states that she wears the fm in any clssroom setting she has been wearing it eever since and her grades are rising. Now the teacher is picking for every little thing wrong with her assignments which im not going to fuss till it gets really bad it should make her a better student dont you think? I was told I had pnuemonia lsat week and on about 4 different kinds of drugs because of it LOL im feeling much better now hope REid is feeling better i know its taking alot out of me because I didnt take any time off of work and worked 60 hours with the dreadful stuff. HOpe all is well with you good hearing from you. And another thing you are the most important part of this site thanks for saying Im an important part just want to be there for the other parents as you were for me. youve helped keep me strong THANKS MICHELE From: Accutemp@prodigy.net CommentsJust found your site recently and ordered your book, anxiously awaiting its arrival. My daughter was not properly diagnosed until she was 6. I knew, but no one agreed with me, not even the doctors. Reading through your site,and crying while doing so, I can relate to so much that you wrote. I applaude your commitment and knowledge.Karen |
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| unilateral loss | From: kpcurtin@attbi.com CommentsOur daughter is in the 3rd grade. She was diagnosed with profound loss in the left ear only during the kindergarten school based screening. The right ear is normal. We have just moved to a new town. In the previous town she was in a class with a child who used a wall mounted fm system and wore hearing aids. We had no formal plans in place for our daughter. The classroom modifications were in place such as preferential seating. With the move and recent audiology testing it was suggested that she have the use of a personal fm system for the classroom. At the 504 meeting the group stated that 'we don't do that for kids with unilateral loss'. We feel that if it is medically rec. that it should be used in her case, not ignored because 'we don't do it'. We are about to start school based testing to see if other services are needed. I feel like we are 2 years late in getting this started and mother guilt is running high right now. But I don't want to look back in ten years and feel that I should have done more. Any ideas? Thanks KPC From: colleen2040@cox.net CommentsI was pursuing through the web to find information because I have people in my 7 year old life that don't understand. Don't give up or give in. Educate!!!!! It is more work but definetly worth the effort. You are just as much an expert. Educate yourself first then the team. Besdies, I think that it may be against the law for them to deny your daughter services. Email me and maybe I can help you and you can help me. Determined mom From: greiber@sisna.com CommentsTalk to your audiologist. Federal law requires hearing impaired children to have the use of an assistive listening device. I have 3 hearing impaired children. When my twins were in kindergarten they did not have this because I didn't know better and didn't push it. Now I just want to kick myself everytime I think about it because that year was a total waste of time for them. At a different school the next year they got personal fm systems and have been using them ever since. What a difference it has made in their grades!!! Don't let the school have a choice, your audiologist should be able to give you info about the federal law. If your school doesn't comply, get a lawyer!!!!!!!! Gwyn From: kpcurtin@attbi.com CommentsHi Gwyn Thanks for your comments. We are pushing the school. We sent another letter to school stating that we would not wait for the educational testing to be completed before decisions were made. We felt the plan was clear and medically justified. I am playing phone tag with our audiologist right now. In the meantime I did hear last Friday that the fm system would be put into a trial use this week, but nothing has happeded so far. My daughter told me that the teacher was being trained by the speech person and that it may not take place until Monday. I am in to school tomorrow for another reason and will be able to catch the teacher for an update. We truely feel that if the need for support is there. And I feel like we are not 'deaf enough'. Just because she has a normal ear it seems that it is not a problem in some minds. But my husband said he looks at it that she has a fifty per cent loss and how could she not need help. Thanks for your support. We are pushing hard. Kathy From: workinmomof2@webtv.net CommentsKudos to you keep pushing remember if you dont speak up for your child no one else will. I am a bear to put it midly when it comes down to my hoh children and i dont think ill ever change LOL Keep up the great work michele From: greiber@sisna.com CommentsTalk to your audiologist. Federal law requires hearing impaired children to have the use of an assistive listening device. I have 3 hearing impaired children. When my twins were in kindergarten they did not have this because I didn't know better and didn't push it. Now I just want to kick myself everytime I think about it because that year was a total waste of time for them. At a different school the next year they got personal fm systems and have been using them ever since. What a difference it has made in their grades!!! Don't let the school have a choice, your audiologist should be able to give you info about the federal law. If your school doesn't comply, get a lawyer!!!!!!!! Gwyn |
| fluctuating loss | see ear drum with good flashlightFrom: mama hohbear CommentsSeeing the scaring on the ear drum is not hard, ../Great Information/a review of middle ear fluid treatment, Ling Sounds help.htm ../Great Information/what_the_heck_does.htm This was taken at one of Reid's audiology appointments by his audiologist using the fiber optic otoscope. If you get a flashlight which does not have a black dot in the middle of the beam (harder than you think), and get the child to relax (haha), then pull the ear a tiny bit to straighten the outer ear canal, and about an inch inside is the ear drum. Little kids have straight ear canals, as they grow it drops off. Your audiologist should be showing you the ear drums, especially if there is scaring. ADD vs. Fluctuating hearing lossFrom: zybash CommentsHas any one udnergone an IEP evaluation where the three letters ADD were brouhgt up despite the fact that your child has had documented hearing loss? I need a shoulder to complain on who understands the frustration!
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| agh! the schools | From: Gonzales360@aol.com CommentsI have an eight year old son with severe bilateral sensorineural hearing loss diagnosed at the age of four. Because of the late diagnosis he also deals with severe expressive/receptive speech delay. His last evaluation don 1 week ago placed him at the level of a five year old. We know no other children who suffer from hearing loss. He is struggling in school and his self-esteem is declining. I want advice from other parents who are dealing with similar circumstances or who have already overcome them. Thank you. Veronica From: greiber@sisna.com Commentshi, I have two 8 year old boys also diagnosed at age 4. One has a moderate hearing loss, the other severe. What is your school doing for your son? My son Eric (severe) also had low self-esteem. He is getting over that now. He seemed to get over that when he started catching up to his peers academically. Besides his hearing aids he has a personal sound system that goes everywhere (music, art, p.e., etc)at school with him. He also has an overhead system in his class. He has made so much progress it is unreal! That is not just due to the technology stuff, that is also because of his teachers. One thing his teachers have done is have a show and tell with his sound system and hearing aids. By having that the other kids now know what these things are all about and aren't curious any longer. It is all very matter of fact for them. Also we have let him be very active in sports. He doesn't wear his hearing aids for that and we make sure the coach knows and compensates by only talking to him face to face. Sometimes that gets hilarious when he can't hear! We do laugh about it but we make sure we are laughing with him. One thing that helps him is knowing that other people have the same problem. Perhaps your son could use a pen-pal that has the same problem. My kids also see an audiologist every week at school. She teaches them how to take care of their hearing aids, does checks on them, covers what a hearing loss is, what causes it, and even plans to teach them how to read an audiogram. Hope I have helped you at least a little. Is your son in the 3rd grade? I think we have a lot in common! Gwyn |
| 504 laws | From: runyan1011@hotmail.com CommentsHi, My name is Rachel and I am studying Speech Pathology. We just reviewed the Section 504 and IDEA laws, and I'm not sure that it's legal to say "we don't do that". (I live in NY state, I'm assuming you do too, if you're going through Section 504.) Is it possible to get a diagnosis of hearing impaired? (if it hasn't been done already) If so, this could qualify your child under IDEA and the school would be MANDATED to provide an FM system if you can get it on your child's IEP (Individualized Education Plan). Do you have a parent advocate that you can contact? They are often very helpful. If you would like the website for the NY State Laws for special services email me. I'm pretty sure it's www.vesid.nysed.gov . If you'd like, I can speck with my audiology professor about it. Hope I've helped a little. Rachel runyan1011@hotmail.com
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| infants | From: alisa_oliver@Hotmail.com CommentsHello, At birth, we found out that our daughter had a moderate hearing loss. We were told that her thresh hold in the left ear was 50 and 80 in the right ear. They put tubes in the ear to extract the fluid that was left over from birth. They were anticipating an improvement in her right ear. Well, we had another ABR today (four months old) and needless to say, her right ear has remained the same. Although, it was disappointing not to have an improvement at least we have a diagnosis and can continue to provide her with the best care possible. She is now considered to have a moderate severe neural sensory loss. I have gone through many emotions but, what it comes down to is I want to offer her the best opportunities in life. I would like to talk with other mothers in the same situation to provide support and bounce ideas off one another. I look forward to hearing from you!! From: ecobcc@dejazzd.com CommentsWe found out when my granddaughter was four weeks old that she had a moderate/severe loss. She is now 6 months old and testing at 6-9months for everything. She has had hearing aids since she was four months old and we are beginning to sign with her. Early Intervention has been very helpful. kathe From: candlish@hardofhearingchildren.com CommentsHi Kathe, I am sorry to hear that your grandchild has a hearing loss. Early identification is very important, and will produce a better life for the child. I also hope you get more help without fighting. Remember that the is a child to be loved. Mamahohbear From: daddy CommentsHello. I am a concerned about hearing. My 3 week old baby girl does not startle (or even move her eye balls) to sounds at all, irrespective of how loud the sound. I spoke to our family doctor 2 weeks ago and he has refered us to the local hospital, but there does not seem to be any urgency for a hearing test. He seems to be of the opinion that it is 'early days'. Nearly all the web sites I have seen say that between birth and 3 months, they should startle. Does this mean that sometimes they startle around 3 months ? Our first child (now 3) was a very alert baby from birth. Any advice would be appreciated. Dad from UK. From: candlish@hardofhearingchildren.com CommentsHi Dad, If you are worried, don't let anyone put you off. Get your baby to an audiologist. You know from reading in my web that we can test hearing from birth on. In Ontario,Canada we can go to an audiologist without even a referral from a GP, but unless the audiologist is working under an ENT, audiology has to be paid for by the parent. If no where else, you can take your baby to a hospital which has an intensive care ward for babies, as they will likely have an audiologist who knows a lot about testing babies hearing,because one place they are already aware of newborn hearing problems is for babies who have a rough start. Don't let your doctor wait for anything. Even if your baby turns out to have normal hearing, you have only to be happy. Also you should have the baby's hearing tested again in a few months. I hope the test reveals normal hearing. However I have to tell you that I knew my son had a hearing problem by the time he was 5 weeks old, and it took 2 audiologists and 2 years to confirm my suspicions. We have much better testing for babies today, and your child has the right to hear. Let us know how it turns out. I am a mother of a hard of hearing child, as well as beng hard of hearing myself. But I have written a great book, the first in the world about hard of hearing children, and know quite a lot about the challenges. It begins with every child in the world having a hearing test, especially your baby. Good luck PAM Candlish From: Daddy CommentsThank you for your response. Baby had her hearing test done at hospital today. The audiologist did three tests - ABR, OAE and something to test for fluid in the middle ear. All the tests were normal. The doctor explained that the lack of startle may be her just not being bothered about the sounds she is hearing right now. He did stress that it was important to have her hearing checked given the observation. From: candlish@hardofhearingchildren.com CommentsWell, Dad, I guess there can't be better news than that. I also know it was a really tough time for you, beenthere, donethat. Terrific. lol PAM |
| toddlers | From: lisa_crandall@hotmail.com CommentsHi everyone, my name is Lisa and I live in New Zealand. My 13-month-old daughter has a severe loss in both ears, edging into the moderate range at the lower frequencies. She was diagnosed at 8 weeks and got her hearing aids at 4 months. She has auditory-verbal therapy once a week and she's making reasonable progress. I also have the problem of her constantly taking out her aids, it's particulary bad at the moment because she is teething. It's nice to know from this board that this is a common problem, but it really is so hard, because I know how important it is for her to wear them, and also because I am pregnant and I'm not full of energy! I feel she often takes them out for attention - any suggestions from people who have been through this on ways to change her behaviour? I'm really glad I've found this message board, it's nice to make contact with other parents of HOH and deaf kiddies. From: morlowski1@earthlink.net CommentsI just this week learned my daughter is mild/mod hoh. It took the wind out of my sail. She had a speech delay and I NEVER expected this. I have been on the web non stop trying to understand it. I have been looking for sites were I can hear what she hears, but to no avail. I was happy to find this site. It is the first time in a week that I realized she is not alone and we will get through this. It also made me think about issues I have yet to face. Thanks all for sharing...Mike From: workinmomof2@webtv.net CommentsI just wanted to tell you that you are not alone and the feelings you are feeling are completely normal. Ive been through it twice with both my daughters. To help you through the feelings you will be facing and the things et to come go out and buy PAMs book called ^^Not Deaf Enough^^ you can purchase it on this site It was a complete life and mind saver to me. My review is also on this site. It makes dealing with this a little easier. Michele From: mamahohbear CommentsHi Mike: My grandson was born in Oct 2000,which makes him 19 months, and he has a mild conductive hearing loss and speech delay. I find that lots of people are busy putting him on waiting lists while time passes. If you stick your fingers in your ears, you are giving yourself a 40 dB hearing loss, also there are certified noise protecters at the hardware which stop exactly 25 dB. SO now you can experience your child's hearing problems right in her own environment. Learn about the Ling sound test and use it. Record your child's speech and date it. Her speech should be compared to hearing and hearing impaired children, regularly. When you talk to your child, face her, and get close. If you are standing and she is standing, there is about 2 feet you can eliminate by squatting to her level. Buy the best hearing aids. My son stopped taking his hearing aid out when he went to digital because the Sound is better, and that makes life easier. Get a FM and use it at home, in the car. You will find that either the medical, social and educational system will lay themselves out, like a buffet of services available for you to pick and choose, or more likely, they will tell you the buffet is closed, you don't need to eat. Learning as much as you can makes you the chef at the buffet. Love the child, and use the world as the best classroom. Good luck. Mamahohbear From: workinmomof2@webtv.net CommentsHi Its me again My 2 almost 3 year old has also been diagnosed with sensineural hearing loss her thresholds are 90 db in her left ear and 60 db in right ear. Soby now you would think i should be a pro. would love hearing form any Moms out there my addy is workinmomof2@webtv.net. Michele From: newimagecomputers@yahoo.com CommentsMy 19 month old has the same problem. We are trying to figure out what to do? Do you have any suggestions. Please help if you can
From: poco@noln.com CommentsJohnny doing a lot better then I expected. He keeps his HA's in all day...so far anyway. Tomorrow we have an appointment with an Auditory Verbal Therapist. This is all very new to us and I'm glad this place is here. Thanks, Kathy From: mamahohbear CommentsThat is great that your child is wearing the hearing aids well. It is a good idea to check the hearing aids before you change locations so you limit the number of places they might be. Sooner or later the child will loose a hearing aid. You have to be cool and remember all the other parents of kids with hearing aids who have lived through this experience. Learn and use the Ling Sound test, make it part of your day AH EE OU SS SH MM and a high sounds password. How was your first A/V appointment? mamahohbear From: zidelgado@aol.com Commentsmy daughter is seven and has just been diagnosed with moderate hearing loss by an audiologist. She displays no signs of hearing impairement and is an A student. She hasn't any speech problems with the exception of R/W sounds. Do you think i should seek a second opinion? What was your experience? Sara
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| teenagers | It would be nice to speak english and sign.From: An HOH teen. CommentsIt would be nice to speak english ang do sign language. I know sign language because I'm HOH and have CHARGE Syndrome and I have a brother who also has CHARGE Syndrome, my brother CAN'T hear and he is 90%-92% blind. It is easier to do sign language to me and my brother, But I feel stupid doing it at school. My teachers look at me like I'm from another planet and if I speak I say a lot of the words wrong and it makes the situation even worse. :( So I rarely speak and have few friends cuase of it. They should teach teachers how to sign to make HOH kids feel more comfortable. And the public should get used to poeple that sign, cause ready or not Sign Language is getting more popular! HOH POEPLE RULE!!! |
| adults | HOH/Deaf College student.From: DG CommentsJust found this site. Wish they had this info out when I was a wee tot. :) I'm not immersed in deaf culture, and never really was. (I has born HOH, and gradually lost my hearing untill I became Profoundly Deaf at 10) Keep up the good work! |
| testing accuracy | From: Dottie CommentsHow relieable is the Threshold ABR test. My daughter had one at age 2 1/2 with normal results but I am still not convinced that she is hearing everything. She will be 4 in June and she is severly speach delayed. Her speach is easily 2 years behind. She seems to understand everything. We have been to every doctor under the sun - 3 neurologists, developmental pediatrician, geneticist, ENT. We were in early intervention, now my daughter is in a preschool for children with speach problems. I am convinced that she is still not hearing everthing. She doesn't seem to hear when someone opens the front door or walks up the stairs. I don't thinks she hears airplanes. She does not sing or dance. All the doctors we have seen have found nothing wrong. I have 5 children and my daughter Diana is number 4 so I think I know what I am talking about. Any advice or information would be greatly appreciated. From: mama hohbear CommentsOne hearing test is not enough between age 2 and 4. You should arrange to have your daughter's hearing tested by an audiologist. If you think she does not hear well, then you are probably right. Also there are different types of hearing loss, sensorineural and conductive. Conductive loss is limited to 40 dB which is a lot of hearing to be missing,conductive loss also can come and go, although most parents think it stays around a long time. Has your daughter had a tympanogram to check her ear drums and pressure in the middle ear. Speech problems are compounded by hearing problems. An audiologist will throughly test your child's hearing, recommend hearing aids if they will help, and help you set up services at school. Hang in there. You are right to think something is wrong. mama hohbear
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| keeping hearing aid in the ear |
From: ecobcc@dejazzd.com CommentsMy little angel is not almost seven months old and has just gotten new aids that are digital. She has learned how to twist and pull those aids just right to get them out quickly and into her mouth! Is there a way to keep them in? Right now we just take them out and wait a short time to put them back in. Of course it may not be long until she has them back out. Re: how to keep them in the ear |
| hoh & epilepsy | From: nancy087@sympatico.ca CommentsMy four year old daughter has a high frequency sensineural hearing loss. Two weeks ago she had a seizure and has been diagnosed as having beneign childhood Rolandic epilepsy (prognosis is very good most (70% of children)outgrow this by puberty. Anyway what has interested me is that I just found out that the part of the brain affected (Rolandic) is the area in which speech is involved. I found that interesting but as we are a bilingual family (french and english) and Danielle takes her Aud-Verbal therapy in the two languages (six months in english with mom and six months in french with dad) it got me wondering. Is anyone aware of any research that links hearing loss and epilepsy?? I didn't start really wondering about this link until I met another parent who's hearing impaired child also developed seizures....I am mystified. I asked the neurologist who simply replied there is no link. Any how just wondering if anyone either knows of any research or who might have heard of anything like this. Thanks for listening. Nancy From: candlish@hardofhearingchildren.com CommentsHi, part of the reason why your doctor does not know about links between this condition and that condition is because they treat each condition to its best possible outcome without consideration for other conditions. I know lots about hard of hearing'ness, and practically nothing about epilepsy. Michele needs hugs right now, and maybe you can compare notes, as she seems to have epilepsy as a complication too. How is it going. Mamahohbear From: Workinmomof2@webtv.net CommentsThis is a new thing for me last week or actually before school let out for the holidays my daughters teacher said that she thought that Carly might be having seizures not the ones most people are used to like grand mal but these happen and look as if the child or person is staring off into space. The teacher said that it has happened numerous times and i went to her pediatrician and she is now set up fpr an EEG on January 14thonce we get that cleared up we will look into her having ADHD She is severely HOH with sensiornueral loss as well high frequency being the worst So maybe you have found a link where no one elsehas please keep me informed of anything you might find. thanks Michele |
| hoh& Down syndrome | keeping aids on 1 yr old with downsFrom: Mark Rosal CommentsHi, I am the parent of a special needs childs- partial trisomy 18, and a hearing loss. We were experiencing alot of frurstration in regards to keeping her aids on, and the products on the market,weren't doing the job, so I invented a hearing aid security device - called Ear Gear. It is a small spandex sock that slips over the bte, and locks it in place the sock or boot is attached to a stretchy cord and a clip to attach to clothes . It is water resistant and comes in 9 colors. It also cuts down on chafing around the ears. We are starting to make an infant model, which has a shorter cord. You may want to check out our website- www.gearforears.com The picture on the homepage is my daughter Shameera who is 8 years old now. From: Theresa CommentsMy precious baby Jack has had aides since he was 5 months and we have a constant struggle with keeping them on. He is not sitting yet because of low muscle tone with Down syndrome...so he's rolling lots..I try to keep aides in as much as possible and that's not much...encouragment and comments welcomed and appreciated...a whole new world for me! From: Paula CommentsI can relate. I have a four year old Down Syndrome boy that has a moderate to severe hearing loss. Double whammy. I thought I was the only one out there, so it is nice to talk with you. I have had such a struggle with him pulling them out. I have used all the products and strategies offered. Im not sure what to do next. He does where them at school or places where there is constant interaction, but at home as soon as the video is over, out comes the aides, and unless I am playing with him he pulls them out. I am also teaching signing to him which he is coming along pretty well. I feel thr Down Syndrome is nothing compared to the struggles with hearing loss and the support is not out there as well. Any advice or input is welcome as well as having new friends in the same boat would be so wonderful for me to chat with. Thank You. Paula
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| hoh & ADHD | From: couplepimpinlife@aol.com CommentsJust came across your site and would like to post a message to parents of deaf/hoh kids regarding ADHD and Behavioral Problems/Disorders. I'm the mother of a 6 year old with bilateral neurosensory severe-profound loss. Raising deaf/hoh kids is a completely different experience from rasing hearing children, and for us first timers it is kind of learn as you go. Deaf kids, most i've known, are more exciteable to begin with but add ADHD/Behavior problems to it and LOOK OUT. Tantrums, lashing out, throwing, hitting, kicking, screaming, impulsive behavior, I have lived it in almost every possible public place. My son was diagnosed 2 months ago when behavior started becoming dangerous to himself and others. He is being treated with ADDERALL 10mg, 1xday. From the very first dose I could see a change in him. For the first time, probably ever, he sat down and played trucks with his brother for over an hour. No screaming, fighting or fits. Please parents, if you see these things in your child, check with your Doctor. I've found in my research that it is very common in deaf/hoh children. From: Workinmomof2@webtv.net CommentsThank you so much for the words of encouragement my daughter will be tested for ADHD after we get this thing straight with them thinking she has Epilepsy ill deffinatly ask her dr about that drug thank you so much. Michele raising a child who is profoundly deaf and ADHDFrom: (Ally) lady_nitrosnfr_@hotmail.com CommentsMy son is 5 years old.He was born profoundly deaf.A year ago we decided to do the Cochlear Implant surgery for him. A few months ago the pediatrician started him on Concerta. He is not having much progress at the moment with the implant.We and the specialist feel it is due to the extreme hyperness and impulsiveness my son has right now.It could be keeping him from being able to focus on anything he could be hearing through the implant.I can handle the hyperness.I can handle the lack of communication.However,my son not having any understanding of fear and danger has me a complete wreck.Every waking hour,he is right with me.He will run out door and down the street,or to the road.He gets out of every car seat on the market.Will hit,kick,throw things when upset.NO understanding of danger,or hurt caused to others. Please give me any information to help..
From: CommentsSounds like you are talking about my son Reid. I once took him to Toy'rus and the manager installed every car seat in my car, the longest he lasted was 10 minutes. The seat belt problem is worse for hohkids because the child cannot see your mouth when you drive. Some people put a mirror on the dash to talk to the kid in the car seat in the back. A child who behaves badly has to be kept in a "small box" You give him choices about what he want to eat, you choose the choices so he will at least eat well, You keep this kind of child right next to you all the time. Talk about everything you do is great for learning to talk anyway, but the child is not given choices or the opportunity of being out of sight and thus headed for destruction. This is a very hard job. You will need help from the family, and as many social services as you can find. You and the rest of the family need time off from an awful sibling. You have to take of yourself first. I am so sorry to hear of your child's diagnosis. Take heart though, Reid was just as bad, and he grew up anyway!!! love Mamahohbear |
| My book | Hard of Hearing SonFrom: cothron0902@yahoo.com CommentsMrs. Candlish, Thank you so much for writing your book! It has saved my sanity. My son has profound loss in L ear and mild loss in R ear. He is two and a half. He was born with congenital CMV, but pretty much okay, except for hearing loss. Of course, CMV causes progressive hearing loss, so we don't know how long he'll keep what he has. His speech is at about 12 month old, we are awaiting hearing aid for R ear. What would you think about an aid for the L ear? Should I push that issue? I pray that you and your family continue in your endeavors to educate those of us who live this life, your book was truely a blessing!!! Thanks again!
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| mentors | From: workinmomof2@webtv.net CommentsI just wanted to let you know PAM that you are MY MENTOR like Daniel is to you. I look up to you as you lok up to him. You were MY SAVING GRACE through a very difficult time. You helped me understand GRIEVE and ACCEPT and ACT. I thank you VERY MUCH even though some of the healthcare and educational profesionals may not. LOL Im sure ive said it many times before THANK YOU I know you have reached out to this mom and through your site I have reached out to other mothers. YOU are a wonderful lady Michele From: PAM CommentsWow, thank you. I am honoured and blessed to have such good friends walking the same paths as me. And Michelle, you are so enthusiastic about my book with your lively review too, really I hope you are writing a book too. How are the kids doing?And you, the expert through fire, wouldn't you say. I am delighted to be your mentor, and you might be mine because we do all learn from each other. mamahohbear |
| hearing aids | hearing aid...helpFrom: cothron0902@yahoo.com CommentsHi! I am certainly no expert, but does your audiologist have any loaners she could allow you to try of each kind, and therefore your daughter could possibly help you in the decision-making process, if one type allows her to hear over another. I know what you mean with the audiologists. My son's loss is profound in his left ear, but showing as mild in his R (around 25-30 dBl)and he is on his third set of tubes,and he's only two and a half! When he had the fluid behind his ears it was at about 30-40 dBl loss with an ABR, however my feelings are, if we are on his third set of tubes, how do we know there is not scar tissue on his good ear drum now? Behavior testing is almost impossible, it's difficult to say the least. We have one scheduled for tomorrow, so say a prayer! I have had to fight for the hearing aid for his good ear, and hopefully we'll have more information on that tomorrow. Christy From: Amy CommentsHelp! I've been on a very long journey with my daughter who is nearly eight and suffers from mild/moderate hearing loss in both ears. Here's my need... Bailey has moderate loss of hearing at low and high frequencies in both ears and mild loss in the middle frequencies. We just met with an audiologist for hearing aid fittings/recommendations (long time coming) and now I need advice from parents in the trenches. I'm guilt ridden over the choice. We've been recommended digital/programmable but with a wide range in price. One, the NewTOne GN Resound is $1300 per ear, while the one (of course) the audiologist is recommending either the Phonak Perseo or Widex Senso Diva is $3000 per ear. I really need some advice. I want to do what is best for my child, but I can't reconcile the cost. My husband is leaning towards the $1300, but my guilt says "how can I deny her the very best" How much difference is there really between these hearing aids? The audiologist has explained all the issues with numbers of programmable regions, numbers of microphones for background noise reduction and of course the best is the "best". But how much is really necessary? How does one judge this? The lower level digital is clearly better than old analog, but do we really need high level digital? I can afford the $6000 price tag, if I couldn't it would probably make this decision easier and I could be at peace knowing I was doing the best I "could" given money constraints. But geez, even being able to afford these, I'm really frustrated with a $6000 price tag. And of course the audiologist can't/won't make this decision for us. So please share your experiences, I need your advice. Just to give you some insight, we've been going round and round with my daughter's hearing loss for nearly six years now. At first we thought this was ear infection related and did tubes. But post testing with ABR and OAC showed loss still existed which inferred congenital oonductive loss. However later audiology tests showed variable results, "How bad was her hearing?" we couldn't get a straight answer. She's quiet, and sensitive and a pleaser, she'll give an affirmative answer even if she can't hear the "beep" so for years we struggled with reliability of hearing tests. (I'm a scientist by training, and drove audiologists crazy with questions about testing methods, reproducible results, controls). Finally we thought we had produced consistent results (She was 6) And a pediatric ENT, surgeon who was confident the hearing loss was incus or stapes problems in the inner ear recommended surgery on one ear to see if we could correct the hearing loss. Answer... we did surgery, post checkup, no improvement. So then it was CT time to look past the inner ear. We discovered her vestibule on both sides is too large and over pressurized which dampens the vibration reception of the ear bones. WE FINALLY HAVE AN ANSWER! And it explains the inconsistent audiology reports. Her hearing fluctuates as the pressure fluctuates. So... long story. Regardless of the fluctuation she will always have hearing loss that is below 20db, with moderate loss at low and high frequenct to 60db or more. Thus the hearing aids! And we are back to the beginning of the story. Forgive my long winded explanation, but having found this site and knowing there are others out there with this experience I feel like I need to share the "adventure" Best wishes to you all, from one hohmom to another, Amy |
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| baby signs | From: cathydowney@earthlink.net CommentsMy son has mild-moderate hearing loss in high frequencies in both ears that was diagnosed at birth; currently aided in one ear; other ear hard to aid because of frequency range of loss. I am struggling right now with decisions...he receives speech therapy and we are also enrolled in a weekly parent-infant program at an auditory verbal speech school. We use baby signs at home. We are considering the toddler program at the speech school (2 mornings a week) next year. His school does not encourage the use of signs and I have strong feelings about using signs to be able to communicate while developing language. I find that it is already helping with my child's frustration level (he just recently said bye bye, but can sign words like waffle, animals, etc). I have not been able to find the right support system for signing and learning speech too. I'd love to talk with anyone that has used signs at an early age and their experience. I'd also love to get in touch with a speech therapist that signs to see how I can find one in Atlanta. Also, any helpful websites. Thanks-Cathy From: mamahohbear CommentsHi Cathy, Baby signs seems to be trendy right now. One of the teachers at school is using them with her baby who has normal hearing. We used Sign Language Fun from Sesame Street with Reid, but always using a phoneme (short sound for a word like ba for bottle, with the sign, and a two word sentences, and a full sentence to model correct english. As the language was added, the sign was dropped. My son was in auditory verbal speech for many years. We felt language development was more important than sign, and there was a certain amount of research indicating that children exposed to sign develop more visual pathways, and children exposed to speech develop more aural pathways. It is the edge of the great debate which wasted most of the resources. We kept emergency sign for "no" and "stop that at once" which was almost a family private thing. You certainly need to help your child as best you can, but with a mild,moderate hearing loss, you need to spend the time on oral or auditory-verbal skills in my opinion, and getting the child out into very stimulating experiences which reward language. However you might look at total communcation and see if it interests you. Good luck.lol mamahohbear |
| ASL | From: Jen CommentsI agree with you. I am a teacher in the regular classroom. I also have two HOH children and I sign too. I have used sign language in my classroom with my students and they like it very much. It also boosts vocabulary. I think it would be great if teachers were given more training/classes in sign language (like they are in Spanish/French/etc. It would help the hearing children too. I am sorry they don't seem very accepting. (Maybe they are just watching out of curiosity.) If I were your teacher, I would sign and talk with you! From: Someone Who Really Knows! Commentsour county does have a school allocated for HI and deaf children, but when she was evaluated for services through our county, they told us she hears too well and wouldn't thrive in that environment. they favor mainstreaming her.>>> Hi JC...Is a split placement an option? That way she'd get the best of both worlds...she'd have access to really good TODs and the knowledge that other kids are out there, and at the same time she'd get good academics and friends from her neighborhood school from her mainstream school. I do not think that hearing status should determine the educational placement of a deaf/hoh kid. That's great that she can hear very well, but what about the times when her hearing aids are broken or she's tired? Hearing aids do NOT restore hearing to normal. I think it's the responsibilty of hearing parents to ensure that deaf and hard of hearing kids can function in any world and any sitution, with hearing aids/CIs and without hearing aids/CIs. Also becoming fluent in ASL might give your child an edge.......she could become an interpreter or a TOD or otherwise work with deaf/hoh folks. Give your child the BEST of BOTH worlds!!!!!!!!!!! A hard of hearing adult who knows
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| Playgrounds | From: veevo@prodigy.net CommentsMy son is 6. He has these 'clips' that have colored thick ties that go to the clip. the clip has a character on it, like a dinosaur, and it clips to the back of his shirt. Then there are 2 strings that go from the clip to each hearing aid and loops around the aid down by the mold. He has never lost an aid, and if it were to fall out of his ear, the string and clip would hang on to it. He never has to take his aids out to play, and honestly, I never worry about him loosing them. I got the clips from his audiologists office. I think they're call 'critter clips' or something. Remote User: CommentsI have a six year old son who has been wearing hearing aids since he was six months old. I put dental floss on his aid to make sure he doesn't loose them. I only take them off if the place we are at is extremely noisy like movie theaters, concerts,Chuck E Cheese. I have never had a problem on the playground just make sure that they are securily in place and you might want to try the dental floss technique. From: reid134@icqmail.com Commentsby the time i was 5 i had tosed my haering aid every whare but my ear. I have never lost my hearing aid on the play ground but if the molds fit right then you dont have to worry (as much) From: workinmomof2@webtv.net CommentsREid as in Mommahohbear Reid? If so finally I get a chance to talk to you. You haev been an insperation to me and my family. Your mom as well. Thank you for the advise Its nie to hear from a child that has been through IT ALL. Thanks again Michele From: veevo@prodigy.net CommentsMy son is 6. He has these 'clips' that have colored thick ties that go to the clip. the clip has a character on it, like a dinosaur, and it clips to the back of his shirt. Then there are 2 strings that go from the clip to each hearing aid and loops around the aid down by the mold. He has never lost an aid, and if it were to fall out of his ear, the string and clip would hang on to it. He never has to take his aids out to play, and honestly, I never worry about him loosing them. I got the clips from his audiologists office. I think they're call 'critter clips' or something. Remote User: CommentsI have a six year old son who has been wearing hearing aids since he was six months old. I put dental floss on his aid to make sure he doesn't loose them. I only take them off if the place we are at is extremely noisy like movie theaters, concerts,Chuck E Cheese. I have never had a problem on the playground just make sure that they are securily in place and you might want to try the dental floss technique. From: CommentsOnce I was at a Chucky Cheese Ball crawl with another mother and kid wearing hearing aids. The kid lost a hearing aid, and the mother reacted in a totally normal way by screaming and having hysterics, sort of like that kid that vomits in the exorcist. I was cool, because it was not my hearing aid, so we jumped into the ball crawl, and frankly I had a ball, although it was a little stinky, and the aid and mold had separated, and eventually we found both parts just as the manager came up and made snide remarks. So been there, did that. You know, the ball crawl is so much fun that it is worth loosing the hearing aid. It's is also fun telling the manager you wer looking for a hearing aid worth more than his salary! mm
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From: Workinmomof2@webtv.net CommentsI just need to vent a little how much can one child and one parent take?? When my beautiful baby came out she looked like an Angel she still is of course but tings have turned out so different now dont get me wrong I wouldnt change her because I love her more than life itself but in the 6 years oflife my daughter has had so many things go wrong.....She had colic.. reflux... was born tounge tied and had that sergically repaired by the time she was one. The we found out about her being estrogen deficient and have to put estrogen creme on her every night before bed with the dr telling us that the problem should disapper when she hits puberty and if that doesnt work that will have to be sergically taken care of the she is diagnosed severly HOH then she gets really thick glasses ( just like her mom thank God for contact lenses) Now we are told she may be epileptic and have ADHD like what this poor child has gone through already isnt enough. Im already on Prozac and dont know how much more I can take before they put me into the funny farm and will all this end up being my three year olds destiny as she has already been diagnosed HOH and estrogen defficient though not as bad as my eldeset. I just feel lost and though I try to act strong etc especially on these posts I am weak hurt and confused I pray that this is all for a reason and that God has some huge plans for some great thing that he is getting her and us ready for but enough is enough isnt it????? I guess I look like im whining and crying I know Im blessed with my children and I know there are far worse things that can happen or couldhave happened but I still think how much can one family take????? Thanks for listening and any advice is more than welcome Michele From: candlish@hardofhearingchildren.com CommentsHi Michele, You have so much to cope with, and it is fine to whine, cry, scream or eat chocolate. How about a break? oh well, mom's don't get breaks until they don't really want them. How about a nice long bath with lavender or clary sage. Just ask the kids to clean the bathroom for you, and they'll stay away from the bathroom for days (joke) Part of what is going on now is more diagnoses earlier which is much better than the BS we had with Reid getting disgnosed with ADHD at 17.(I think being mamestreamed without support caused or made it worse. So rather than having 10 years at school with no provisions for behaviour, an earlier diagnosis should make the school system try to provide more. I know very little about epilepsy, except my sheltie of university days had occasional fits, usually caused by flashing lights on metal trim. Medication (this was 30 years ago) was possible even then, but she did not have the problem often enough so we just kept her quiet and let her rest after. You have more options of medications for epilepsy, and I think that dread of the seizures is worse than the seizures themselves. I also saw a working dog on TV who was able to sense when the seizures were coming before the person knew. This might help you. Do you have a dog? But I am not a doctor, and this is a condition for a doctor to give you guidance on, and, no matter what, it is better to know than not to know. You need warm fuzzies. Here are some from me for you. I hope other parents can help work through the decisions like medication for ADHD, it works well for some. I have a friend who is ADHD, and he is a trial to his family because he is blustery, but underneath, he is a gentle kind soul. You'll need patience. hugs, PAM |
| terrific website! | From: greiber@sisna.com Commentssince i discovered this website 4 days ago, i have been back every day. i have 3 hoh children, an hoh husband, and am hoh myself. reading some of the articles posted has made me realize i am not alone. i told the pediatrician at 6 weeks (ft leonardwood, mo) that one of my twin sons couldn't hear well. he was not diagnosed until age 4 when i had a nasty temper tantrum because his speech was unintelligable (ft bragg,nc). they didn't get hearing aids because my husband was retiring and aids are not covered for military retirees dependents. the first year of school for my boys was a wasted year because the school threw away the audiograms i took them. i suppose they thought i was another crazy mom who didn't know what the heck i was talking about. luckily we moved again and are in a great situation now. fm systems are at least as important as hearing aids. i hope i dont sound like i'm whining, some of the things i have read on this site have brought back memories and made me cry. in a good way, because i don't feel so alone. i would just like to add that our new school is awesome and we have the best 2 audiologists ever. gwyn From: candlish@sentex.net CommentsHi Gwyn, So nice of you to post your reflections. You have quite an unusual family,and you are doing a great job.We all cry.But we also wonder what to do and then we become so busy that we push back the tears? Mothers do not whine, mothers inform closed ears of the facts. It sounds to me like you have been rolling around in the grand canyon of lack of services. We can put you on a pedestal and point to you and say, "Look this is the reality of what is going on out there" Before the internet became a place to learn, your children would not have had a hearing loss indicated until age 5 kindergarten intake screening which is much too late, and if that failed, which it often did because it was not audiologists running the program, it would have failure in grade two or three. The trick of course is getting to a great audiologist who is interested in defining anything but profound deafness, early in the child's life. We are separated as parents and people when we deal with hard of hearingness, and just about powerless. Now we learn from other parents, and we learn that there are other parents, and we each grow from meeting and sharing. And we are redefining the lines of help by pushing back and demanding help for these children and families. by the way, how do you manage the finances of a family all needing amplification? Thank you for your lovely comments. I hope you will get in touch with Michele who is the mother of two hoh kids, and between you two, you can set the world on fire. love mamahohbear From: workinmomof2@webtv.net CommentsHI Gwyn Wow I admire your strength My name is Michele the one pam talked about and I hope you do get in touch with me. My children a 6 and 3 and both HOH and I am a grizzly bear when it comes down to my children and there rights as people living with being hard of hearing. I think that the THREE of us and other parents out there geting together to fight the injusteses ( i cant spell LOL) would be great Drop a line anytime..... Michele From: candlish@sentex.net CommentsForm and function this site has it all.The outstanding graphics and superb organisation and ease of movement make it easy and delightful to pick up the gems of knowledge. Ross |
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From: M3CBurke@webtv.net Commentsi dont have anyone to share my feelings with or my funny stories with or my joy when she makes a new goal. I know my child is not the only one and it would be very nice to be able to get in contact with someone else.-Michelle From: sue-c-q@imcnet.net CommentsOops..... I am not proficient w/the computer...I have a 6yr active boy who is mod hearing impaired.....i would love to chat...-sue |
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| choosing Oral | parent of hoh...important decisions to makeFrom: jc Commentsi just discovered this site while trying to research new aids for my 4 yr. old HOH daughter. we have known about her hearing loss (moderate) since birth (mandatory testing for newborns). she wears bilateral hearing aids, attends a mainstream preschool, goes to private speech therapy twice a week, and meets w/`a hearing itinerate teacher through our public school system. we pulled her from the speech offered through the county school system because they were servicing 5 children at a time with one therapist--none of the other children were HI and all had very different speech problems. up until this year, we have felt confident about the things we were doing to help her. as she approaches elementary school, we find ourselves questioning whether or not we are doing enough. she is the youngest in her preschool class (turned 4 just before this yr. started while many of her classmates are already turning 5)...but excels in academics. she has a wonderful teacher who knows sign language and uses it in the classroom. (our daughter was a great signer as a baby/toddler, but has dropped the signing as she has gotten older and increased her verbal abilities.) she is a little behind socially--she doesn't grasp some concepts that other children in her class understand. for example, she doesn't understand jokes and she often misunderstands what her friends tell her or she interrupts because she doesn't realize that someone else is talking or she talks extremely loud (which annoys other kids). right now we are uncertain how to approach her future schooling. should we send her to a public school where there are 22-25 students in a class? will she "fall through the cracks" in that environment? should we hold her back a year (if she wasn't HI we know we wouldn't hold her back--is this bad?) her therapists and teachers fear she will be bored with another year of preschool as she is already showing reading readiness. should we send her to a private school where the classes are smaller but where she will still have to go through the public system for services? our county does have a school allocated for HI and deaf children, but when she was evaluated for services through our county, they told us she hears too well and wouldn't thrive in that environment. they favor mainstreaming her. our audiologist has suggested new hearing aids--this will be the first time we have purchased HA since she was 6 months old (1999). at that time, we were still absorbing everything and let our then-audiologist tell us which ones would be best. we currently have SENSO by widex..the audiologist has suggested phonaks and an FM system for her to use at home. we are overwhelmed! considering the fact that we live near a large city, i have found little resources and have felt like i am "on my own"--i have never had a mentor or known anyone who i can seek advice from. i could use some advice from experienced parents as well as any resources! thank you From: anothermom CommentsI have had the same problems! I have two children with moderate losses bilaterally. One is 3 1/2 and the other 8mths. My 3 year old ran in stores and thought it was a game. She ran from me in a shoe store one day while I was VERY pregnant. The chase, I'm sure, was hilarious to watch but cause much frustration on my part. As soon as I caught her, I explained that someone could take her and leave with her. Her only comment after that was, "And they'll take my shoes too??" Of course now I can find the humor in it. She rarely does it now. Every time she did it, we would take her out. She finally either understood or just got tired of the chase. As far as running and getting lost from teachers. My daughter has a buddy or two at preschool and they help her know what is going on, etc. They could also help with letting the teacher know if she is missing or has any other problem. As a teacher myself, I am a habitual counter of all my students. Most teachers have a fear of leaving a child behind or losing one so they will be even more cautious if you warn them ahead of time. I have also found reading, reading, reading, and talking, talking, talking with her has helped with her speech. She's had hearing aids since she has been 6mths and we did some signing with her because we had heard that it boosted vocab. Everyone who talks to her mentions how developed her vocab. is. I don't know if it was the reading, talking, signing, or all of the above that has done the trick. She was just evaluated by a speech therapist at her preschool and was found to be developmentally on level. I know to some extent what you are going through and I was happy to see that someone else has the same problems I do! It makes me feel better. anothermom Hard of Hearing DaughterFrom: Lynn Huffstedtler CommentsHi All, I wish I had found this sight 3 years ago. My husband and I (and two other daughters) have been dealing with my second daughter's hearing loss for the last (greater than) 3 years. She wasnt' diagnosed hard of hearing until she was just over 3 years old, largely due to the fact that she was severely premature. That kind of slewed the whole developmental timetable for us. Also, her pediatrician (who has extensive experience with premature babies) felt that there wasn't a pressing need for concern over her beginning to speak until she was over 3. She babbles quite a lot, but only a small handful of her words would be recognizable by anyone, frequently including us. She has been diagnosed with moderate to severe loss bilateraly, with that designation being given to her hearing in her better ear. I would love to find Pam's book; I could probably write a book of my own on the subject, except that I'm sure people would find it impossible to believe (with the exception to that being those who have to live with hoh children themselves). HOH children seem to occupy a strange place between Deaf Culture and the hearing world. My husband and children and I are making an effort to learn to sign, but I've found it difficult. There are no readily available classes for children at the age that is really optimal for language aquisition. I've been taking classes at the local community college (from a man who is a CODA and is registered as a level 6 interpreter). I've learned quite a lot about Deaf Culture and signing from him, but in some ways I'm still worried and concerned about her. I thought your title was most appropriate: Not Deaf Enough. Have any of you other parents of HOH children had similar feelings about your child's place in or out of the Deaf Community? I am fiercely proud of all 3 of my daughters; sometimes I worry that it won't be enough.
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| hoh or deaf | From: lorismyth@yahoo.com CommentsI am a Mom of a 2 1/2 yr. old son who was diagnosed with Moderate-Severe sensi-neural hearing loss at 13 months. He has responded well to the 2 hearing aids he wears. He is now talking, some words very clear, others not. We have been signing with him, but not in sentences, more like single words, and he will sign back, but usually says the word at the same time. I never know whether to call him HOH or Deaf, he seems to be in the middle. He will be starting an Early Childhood program in the Fall with all the students having varying degrees of hearing loss. It is Total Communication, with teachers talking and signing at the same time; some students sign, some talk, some do both. I would love ANY COMMENTS and/or to hear from anyone else in this situation. Thank for listening! E's Mom From: mamahohbear CommentsLabeling is complicated. Deafness is invisible until we have hearing aids as a clue. By the way do you have a FM for your child? Different people will use different labels which come from their own experience. If you want to have a a battle use a different term from theirs, and if you want to listen, go with the flow. Going by the audiogram, your child is hard of hearing because his threshold is under 70 dB. To be really anal about it, the politically correct way is my child X who is hard of hearing, as in the title of my book. Not Deaf Enough:raising a child who is hard of hearing. Call your child by his name without mentioning his hearing loss. True success of parenting a child with hearing problems is that you think of him as your kid first. You are doing a great job as a parent. Good luck with school. mamahohbear |
| john tracy clinic | From: Workinmomof2@webtv.net CommentsIts ne yet again can you tell I like to talk I just wanted to share with Yall an organization called the john tracy clinic. They are there for familys of HOH or Deaf children. They have something called a correspondance course( did I spell that right) doubt it LOL. its for children up until the age of 5. They send lessons etc through the mail to help you with the development of speech behaviors etc for your child. You can find tham at www.JTC.Org Its completely free and they help you with specific problems etc with personal letters through the mail I just enrolled myself and megan (3) about a half hour ago and the woman told me that all i have to do is change a few things and I can use them on my 6 year old as well(carly).... oh and BTW Great ob DARK im PROUD OF you now I just need you to talk to my child carly refuses to wear her fm. you go Michele From: mamahohbear CommentsWhen Spencer Tracy found out his son John was deaf, he blamed himself, drank more. His wife Louise used her grief to help deaf children, by setting up this clinic. Reid had classes from thetracy clinic when he was very little, and his itin teacher studied there. A wonderful place of hope. You are right. |
| FM's | From: DarkArtemisOne@hotmail.com Commentsim in grade 8 and about 2 years ago i stopped wearing the FM system. before they used to be litte boxes that were put around your waist and all that.. i stopped using the FM because it just made me uncomfortable and i couldnt concentrate on my school work. well now they say they have the "new amazing fm system!" with the little booth that you just click on to your hearing aid. now everyone is bugging me to get it but the thing is, the teacher has the speaker that you can notice really well. so i dont see any difference.. you see it, you see it. well i just want to ask, do any of the parents here have kids that wear this new FM system? can you tell me what they think of it? im not saying ill NEVER consider the fm system but if i need it, of course i will. From: reid134@icqmail.com CommentsHi my name is Reid Candlish. I am PAM's son. I must say you have a valad reson for not wanting to ware the FM but I my self have the clario 211 DAZ and I ware my FM all the time. you are not the one who wares the box any more and I beleve that you can now get smaller FM tansmetters for the teacher. If you like i can get you some more info on these. goto go bye bye Reid From: DarkArtemisOne@Hotmail.com Commentsgeeeez it wasnt such a big deal after all! i've been wearing it for 2 days now and it has been SO awesome. my classmates actually think it's cool and they're already adjusting to it. Mine is the small booth which is about 2.5 cm and you click it onto your hearing aid. and the teacher has the speaker with an antenna on it and all that. It has been better for me and i don't have to strain so much to hear, im actually not that tired after school anymore. thanks for all the help i got from you guys! From: mamahohbear CommentsYou are right, the box FM's are a drag. My son Reid first tried a Microlink in 1996, and got one in 1997.HE LOVES HIS MICROLINK. His newest hearing aid (bright red) has a FM built right into it. The teacher wears a headset microphone so you can hear what is said in class. There are other mikes around, but they are not as good. Your teacher also has to learn to use the technology effectively, by repeating the answers which you cannot hear. There is also a multipurpose mike which can be put on a table to bring all the voices around to your ears. My son heard conversation in class for the 1 st time when he had one of these mikes on the table. No matter how awful you think the equipment is, it is so much better than being unable to hear. This is why your family is insisting on using the equipment. The teasing of kids with hearing problems is awful, but it doesn't start with your equipment, it starts with you not hearing part of a conversation, a joke, a whispered secret. I know because I have a 40 to 70 dB loss, and I cannot afford my own hearing aids, so I am fair game for all the "Ah, she didn't hear" too. You have a terrific life ahead of you. Hearing aids will probably become completely invisible, and you will learn who is a friend. Real friends don't pick on you, they pick you up. lol mamahohbear From: veevo@prodigy.net CommentsMy son wears an FM system. I think it is like what you are describing. It has 'jacks' that boot into his hearing aids. He still wears the box on him, and the teacher has a little box that she wears around her neck. My son is only 6. He says he doesn't like to wear it because when he leaves his homeroom, the other children stare at him. That makes me feel very sad, that he has to feel that way. On the other hand, I know that when Seth is done with school, and out in the world on his own, there won't be any excuses made for him. Nobody will care that he has moderate hearing loss, and maybe didn't learn as much as the other kids because he couldn't hear it. That he doesn't read or write as well because he has hearing loss, that he graduated in the lower portion of his class because he has hearing loss. None of this is going to matter, sad but true. What will be noticed is that he is very smart, that he graduates at the top of his class, that he can read and write very well. This will only happen if I make sure he gets EVERY opportunity that every child gets, hearing included. That is why I will push for Seth to wear the FM system, so he can hear as much as possible, learn as much as possible. When you get out of high school and into college, it doesn't matter that you may be a little different and have hearing aids or an FM system or something. There are SOOOO many people in college, and of SOOO many different ages, that teasing over little things like FM systems and hearing aids don't happen. You will meet so many people who like you for you, and you will have the time of your life. So, be able to enter it with every advantage that you can get. From: DarkArtemisOne@hotmail.com CommentsIt is really really hard to think that i shouldn't care what other people think because 10 years from now, they won't even remember you! And you missed out on the best things for yourself just because you were worried for what other people were thinking about you. What you said really made me feel so much better and after almost 3 nervewracking weeks of thinking and everyone saying positive things about it, on monday I'm going to be trying the FM System! So now, I am getting the lady that came to me about the FM to talk to my class and explain what it is to them. <I think its better if im out of the class since the class wont be uncomfortable about asking some questions they dont want me to hear> Thanks so much for your encouragement and even though your son might be mad about being HOH right now, someday he'll realize and admit that he is HOH proudly and can be so much better than an average hearing person. |
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| mainstreaming |
From: hohbear@hardofhearingchildren.com/ CommentsWho evaluates your child's speech, language and social development? If the school is doing this, the school will probably find the child has absolutely no problems. If they identify the needs, they have to provide the special services, which cost money which they don't want to spend on your child. Mainstreaming was difficult for us. Reid cried all day at school, and the lack of support was cruel. Doing his life over, I would have put him in a class for oral deaf students, at least for the early primary years. The foundations for the childs future education are based on the early years, and if your child doesn't hear, he or she will not learn now, and flounder in the future. How are things going after two weeks of school? From: workinmomof2@webtv.net Commentswell we have gotten the news that my 5 year old little girl will be mainstreamed most of the day. they say she is too advanced to belong to the hearing impaired class the whole day so she will be in the class for the first hour and then be in the main kindergarten the rest of the day. And if they find she is having difficulty in certain areas she will be helped by the hoh teacher in hat first hour. Im kinda worried that shes not ready but they wouldnt do this if he wasnt right? she will be using an auditory trainer throught the entire day. I guess im just being over bearing I feel like im setting her up to be singled out and teased i am overreacting right? please share you feelings and is there anyone out there with the same as me? Michele aka burkeygirl m3cburke From: workinmomof2@webtv.net CommentsShe is in a program for the hard of hearing but she uses the program for resource the first half hour of the day.. she is in the mainstream kindergarten for the rest of the day... She is a very oral child and speaks very well for her hearing deficiet the teachers in the school are trained and certified teachers of the hard of hearing she has a speech therapist who is also certifiedin sign language etc for the hard of hearing Carly loves school she is learning tremendously fast and she is great in both classes i am told she is too advanced to be in the hard of hearing class and is right up there with the mainstream level From: hohbear@hardofhearingchildren.com/ CommentsIt sounds as though things are going well for Carly. Kindergarten is an interesting age.My children were exhausted by school and would sleep every afternoon for the fall term (they had morning kindergarten) Reid went on alternate days, and was equally exhausted on the days he did not go to school. He also cried all day at school, which I attributed to being spoiled (which was the teacher's suggestion) and I realized after that he was not ready for school because of late diagnosis, and all the other things. So if Carly seems happy, then this is a good placement for her. If she is not happy, then I would change things. Having a teacher who knows about hearing loss can make life easier or harder for the parent depending on what the teacher knows. Standards have to be set for each child, based on the child's speech progression and reading readiness. You have to drop in once in a while, and see how things are going. If Carly is happy, and the teacher is using a FM properly, then you can go out for a celebrationary cup of coffee after all the hard work you have done. From: anothermom CommentsI have had the same problems! I have two children with moderate losses bilaterally. One is 3 1/2 and the other 8mths. My 3 year old ran in stores and thought it was a game. She ran from me in a shoe store one day while I was VERY pregnant. The chase, I'm sure, was hilarious to watch but cause much frustration on my part. As soon as I caught her, I explained that someone could take her and leave with her. Her only comment after that was, "And they'll take my shoes too??" Of course now I can find the humor in it. She rarely does it now. Every time she did it, we would take her out. She finally either understood or just got tired of the chase. As far as running and getting lost from teachers. My daughter has a buddy or two at preschool and they help her know what is going on, etc. They could also help with letting the teacher know if she is missing or has any other problem. As a teacher myself, I am a habitual counter of all my students. Most teachers have a fear of leaving a child behind or losing one so they will be even more cautious if you warn them ahead of time. I have also found reading, reading, reading, and talking, talking, talking with her has helped with her speech. She's had hearing aids since she has been 6mths and we did some signing with her because we had heard that it boosted vocab. Everyone who talks to her mentions how developed her vocab. is. I don't know if it was the reading, talking, signing, or all of the above that has done the trick. She was just evaluated by a speech therapist at her preschool and was found to be developmentally on level. I know to some extent what you are going through and I was happy to see that someone else has the same problems I do! It makes me feel better. anothermom
from: mama hohbear CommentsReid always took off in stores. As a toddler being forced to give up the pacifier, he would find the baby dept, find the pacifiers, and open them until he found his brand. I would find him sitting on the floor surrounded by pacifiers. When he got older he headed to the toy department. Finally I started all shopping trips by locating the toy dept for both of us, and agreeing at the worst, we would meet there. I have terrfied generations of shoppers with my ability to yell in the store at the hohchild who is like houdini in his ability to leave. AT walmart when a child is lost, the doors are locked and a store team looks for the child according to your description of clothing...so try hard to remember what the child is wearing, (and if you want a little holiday change the jacket colour) I have drawn a complete blank often at that stage of the intake process...all you have to do is tell a cashier or customer service. Mention that the child is deaf and will not hear. My theory about stores is that they are wonderful language labs, and that my presence is a gift to the store, therefore they will not mind the child hanging out in the toy dept for a short time. The people who work there don't feel that way at all, but I could not be at the store and they would not have a job. My children are polite and do not scream or they go to the car, and the toy dept is where kids find out what they want. If you are very worried about the safety of the child in a store, then why are you going there? Mama hohbear From: Lynn CommentsMy son had tubes and now has bi-lateral hearing aids. He was in speech while in preschool. I strongly recommed this. As for kindergarden the school he attends is giving him speech 3x a week. From what I have been told when they start to read they can't hear how to sound out words so will affect the learning to read and spelling.
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From: workinmomof2@webtv.net CommentsI was wondering about schooling.. My daughter has to get transported about 45 min away to go to a program for Deaf and HOH children.. My husband And myself had agreed that we would do the Total communication route for our 5 year old daughter but since she has gotten her aides she has significally become more verbal. Are we making a mistake. Now dont get me wrong i love sign ( I have to etach myself because there are no courses in my area to learn) My daughter loves sign she teaches my 2 year old sign as well. But i am afraid she will not be given all the same opportunities that a total oral child would. Does anyone have any advice for me? Michele aka burkeygirl From: CommentsTechnically,the choice of Total communication gives the child both sign and speech at the same time. It seems like a great answer to what to do as it allows for both modes of communication. I am going out on a limb here, but the cochlear implants, according to Carol Flexer PHD, are working so well that kids with profound hearing losses end up with mild hearing losses. They go from being deaf to being hard of hearing. If your child's threshold is over 80 or 90 dB,a cochlear implant is something to think about, and soon. If your child's threshold is moderate to severe, total communication is an option, along with auditory/oral. The hearing aids of today are very good and can give a lot of oral support. However,when the child does not have hearing aids in, the child cannot hear, so sign is convenient. I have always signed (in signed exact english) "no", and "stop that". We used signed exact english and phonemes with Reid when he was little. As his verbal skills grew, we dropped the sign, and concentrated on his speech and language. Today, he has perfect speech, but I still do an hour or two every day. The school has never helped. Institutions try to teach speech in a group to save money. This does not work very well. I think you are wise to send the child to a school for the Deaf and HOH. My child had a tough time in a mainstream classroom, and I would not do it again. Your child is old enough to make her mind up. Ask her what she thinks. |
| Hearing aids in summer WET |
From: burkeygirl@webtv.net CommentsI taught my daughter that they came off anytime she was near water(except for washing hands etc) she immediatly knows they come off and into an adults hand because they will break and she wont hear which is something she treasures after not hearing for so long.... like before going in pool and bathtub we do an atomatic hearing aid check now its second nature i dont think about it then halfway through bath i say did i check her i ask her (in sign) where are your hearing aids she laughs and says on top of the tv already mommy she thinks its funny her mom is going senile michele From: cubby@springnet1.com(Carolyn) CommentsHi Pam! Cubby and his Dad went to take an evening swim in Grandads indoor pool and jumped right in hearing aids and all...Of course that would never happen if Mom had been around...Brian wiped off the aids(5000.00 programables) and discovered he had not brought the dri aid kit. I took them into the Audi imm. on Monday. She was not happy, but she said they would probably be ok. I think they should have the mother board checked, but Cubby cannot be without his aids. I am a big proponent of the aids not going to the pool... Dri Aid kits do make a big difference. Hugs Carolyn
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| !st time Hearing |
From: M3CBurke@webtv.net CommentsIts not really a joke but I have an anecdot. The day that Carly got her hearing aids she was so excited. When we got home she went to go use the bathroom. after she came running out and was yelling with a big smile on her face..."mommy I heard my pee!"-Michele |
