Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 In a message dated 8/23/04 5:31:54 PM Pacific Daylight Time, aldelgaudio@... writes: > She coos, startles > at sounds, turns to hear different sounds and voices..etc. Why > would I think there was a loss? Am I crazy or are these normal > reactions for a baby with a mild-moderate loss? I recently spoke to > someone whose baby failed the hearing screening 4 times and finally > at 5 months old, he passed. Could hearing still be developing in a > baby this young? I am just so confused and am having a really hard > time accepting this. Has anyone else been through this? Hearing loss can be very hard to detect. I have a severe/profound loss in my right ear and no one had any idea until the hearing screening in Kindergarten. Many children with a unilateral loss are diagnosed even later. Granted, my right ear is normal, but it is still hard for me to hear in certain situations. A baby with mild/moderate hearing loss would very likely coo and do all the things you mention. I am not sure, but I think even babies who are profoundly deaf still coo and babble until around 9 months. And if her loss is mild/moderate, it could very well be that she's picking up parts of the sounds, but not all of the sounds and she may be missing sounds in higher frequencies but hears enough to react appropriately for her age. As for hearing developing after birth, normally hearing is completely developed prenatally as far as I know. But what is possible is for a child to fail the tests due to fluid in the ears. Sometimes babies will have fluid in the ears even without ever having ear infections. The fluid may or may not go away on it's own. This is what happened to my daughter so we had to put tubes in her ears. It helped her right ear but there is still the severe/profound loss in her left ear-just like me. I know it can be hard to believe that she can really have a hearing loss when she responds appropriately right now but I would definitely do more testing to make sure. Good luck. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 In a message dated 8/23/04 5:31:54 PM Pacific Daylight Time, aldelgaudio@... writes: > She coos, startles > at sounds, turns to hear different sounds and voices..etc. Why > would I think there was a loss? Am I crazy or are these normal > reactions for a baby with a mild-moderate loss? I recently spoke to > someone whose baby failed the hearing screening 4 times and finally > at 5 months old, he passed. Could hearing still be developing in a > baby this young? I am just so confused and am having a really hard > time accepting this. Has anyone else been through this? Hearing loss can be very hard to detect. I have a severe/profound loss in my right ear and no one had any idea until the hearing screening in Kindergarten. Many children with a unilateral loss are diagnosed even later. Granted, my right ear is normal, but it is still hard for me to hear in certain situations. A baby with mild/moderate hearing loss would very likely coo and do all the things you mention. I am not sure, but I think even babies who are profoundly deaf still coo and babble until around 9 months. And if her loss is mild/moderate, it could very well be that she's picking up parts of the sounds, but not all of the sounds and she may be missing sounds in higher frequencies but hears enough to react appropriately for her age. As for hearing developing after birth, normally hearing is completely developed prenatally as far as I know. But what is possible is for a child to fail the tests due to fluid in the ears. Sometimes babies will have fluid in the ears even without ever having ear infections. The fluid may or may not go away on it's own. This is what happened to my daughter so we had to put tubes in her ears. It helped her right ear but there is still the severe/profound loss in her left ear-just like me. I know it can be hard to believe that she can really have a hearing loss when she responds appropriately right now but I would definitely do more testing to make sure. Good luck. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Alison - Our son Liam failed his newborn hearing screening at birth. We didn't think anything of it because they told us that many babies fail but most will pass the second screening. We took Liam at one month for his second screening and he failed it too. It's funny because during that month, he would sleep while my 2 year old played loudly. My husband would try to get the 2 year old to quiet down and I would joke " it's okay - Liam can't hear anyway " . Never did I believe it. He would look towards the direction of a sound and seemed alert and aware of his surroundings. He went at one month and failed that screening. He was set up for an ABR a week after that and it was the longest week ever. We were banging pots and pans, dropping things, vacuuming while he slept, all in an effort to diagnose him as hearing. We would shout at each other from across the house - " He heard it. He looked! " Anyway, he was diagnosed as bilateral mild/moderate loss at six weeks and had hearing aids at nine weeks. We were in shock because we do not have any kind of hearing loss in our family. I had a normal pregnancy, normal birth. I watched what I eat, exercise, don't drink, smoke or do drugs. Maybe a few too many chicken fingers....... Anyway, Liam grew so quickly, as babies do, that his ear moulds never fit him. As soon as a set came in, he was ready for a new impression and we have to wait two weeks for the new set to come in. By the time they came in we were starting all over again. So it is only now that he is able to wear a set of ear moulds for an extended period of time (he is 7 1/2 months). During the times when his aids didn't fit, he went without and still seemed normal " . People would ask us if the aids made a difference and to us he seemed to be " hearing " without them. He would coo to us when we cooed to him. He would " conversate " with us - take turns and everything, without is aids in. I too began to doubt that he had any kind of loss. But I am very trusting of people in the medical profession. This may be a bad thing... but it has worked to our advantage so far. Liam had another ABR at 3months and a sedated ABR at 6 months. All showed mild/moderate loss. Liam is doing great - he is meeting all of his expected milestones. He is babbling, waving bye bye, laughing at his big brothers funny faces and funny noises. Remember, a baby with mild/moderate loss isn't deaf - Lucy can hear That is why she is reacting the way you say. The way the audi put it to us is that Liam hears like a radio out of tune - in bits and pieces depending on the frequency. The aids are to help fill in the pieces that are missing. I hope this helps. I know I rambled on and on. It is best to treat Lucy now as if she does have hearing loss. Who knows.....maybe she has full hearing but it is better to be safe than sorry. This group has helped us a lot. I wish you all the best. If you need any thing, feel free to let me know! :-) Dianne Mom to Jack (2, hearing) and Liam (7 months, bilateral mild/moderate hearing loss) -- still confused I have posted here a few times about our daughter Lucy - 4 months old who failed her newborn hearing screening. She failed a second one at 3 weeks of age and had an ABR done at 8 weeks that showed a mild-moderate loss. To make a long story short, we have since found a new audiologist that we really like and we are taking our time with things which is fine with me. The Audiologist wants to do some behavioral tests on her in a few weeks to see her reactions (oh we don't have hearing aids yet). I was just wondering if there was anyone else out there who had an infant with a mild-moderate loss. Call it denial, but I am not convinced of her hearing loss. I referred to a pamphlet that I was given by our state about hearing loss and Lucy falls into zero of the categories. She coos, startles at sounds, turns to hear different sounds and voices..etc. Why would I think there was a loss? Am I crazy or are these normal reactions for a baby with a mild-moderate loss? I recently spoke to someone whose baby failed the hearing screening 4 times and finally at 5 months old, he passed. Could hearing still be developing in a baby this young? I am just so confused and am having a really hard time accepting this. Has anyone else been through this? Thanks. Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Alison - Our son Liam failed his newborn hearing screening at birth. We didn't think anything of it because they told us that many babies fail but most will pass the second screening. We took Liam at one month for his second screening and he failed it too. It's funny because during that month, he would sleep while my 2 year old played loudly. My husband would try to get the 2 year old to quiet down and I would joke " it's okay - Liam can't hear anyway " . Never did I believe it. He would look towards the direction of a sound and seemed alert and aware of his surroundings. He went at one month and failed that screening. He was set up for an ABR a week after that and it was the longest week ever. We were banging pots and pans, dropping things, vacuuming while he slept, all in an effort to diagnose him as hearing. We would shout at each other from across the house - " He heard it. He looked! " Anyway, he was diagnosed as bilateral mild/moderate loss at six weeks and had hearing aids at nine weeks. We were in shock because we do not have any kind of hearing loss in our family. I had a normal pregnancy, normal birth. I watched what I eat, exercise, don't drink, smoke or do drugs. Maybe a few too many chicken fingers....... Anyway, Liam grew so quickly, as babies do, that his ear moulds never fit him. As soon as a set came in, he was ready for a new impression and we have to wait two weeks for the new set to come in. By the time they came in we were starting all over again. So it is only now that he is able to wear a set of ear moulds for an extended period of time (he is 7 1/2 months). During the times when his aids didn't fit, he went without and still seemed normal " . People would ask us if the aids made a difference and to us he seemed to be " hearing " without them. He would coo to us when we cooed to him. He would " conversate " with us - take turns and everything, without is aids in. I too began to doubt that he had any kind of loss. But I am very trusting of people in the medical profession. This may be a bad thing... but it has worked to our advantage so far. Liam had another ABR at 3months and a sedated ABR at 6 months. All showed mild/moderate loss. Liam is doing great - he is meeting all of his expected milestones. He is babbling, waving bye bye, laughing at his big brothers funny faces and funny noises. Remember, a baby with mild/moderate loss isn't deaf - Lucy can hear That is why she is reacting the way you say. The way the audi put it to us is that Liam hears like a radio out of tune - in bits and pieces depending on the frequency. The aids are to help fill in the pieces that are missing. I hope this helps. I know I rambled on and on. It is best to treat Lucy now as if she does have hearing loss. Who knows.....maybe she has full hearing but it is better to be safe than sorry. This group has helped us a lot. I wish you all the best. If you need any thing, feel free to let me know! :-) Dianne Mom to Jack (2, hearing) and Liam (7 months, bilateral mild/moderate hearing loss) -- still confused I have posted here a few times about our daughter Lucy - 4 months old who failed her newborn hearing screening. She failed a second one at 3 weeks of age and had an ABR done at 8 weeks that showed a mild-moderate loss. To make a long story short, we have since found a new audiologist that we really like and we are taking our time with things which is fine with me. The Audiologist wants to do some behavioral tests on her in a few weeks to see her reactions (oh we don't have hearing aids yet). I was just wondering if there was anyone else out there who had an infant with a mild-moderate loss. Call it denial, but I am not convinced of her hearing loss. I referred to a pamphlet that I was given by our state about hearing loss and Lucy falls into zero of the categories. She coos, startles at sounds, turns to hear different sounds and voices..etc. Why would I think there was a loss? Am I crazy or are these normal reactions for a baby with a mild-moderate loss? I recently spoke to someone whose baby failed the hearing screening 4 times and finally at 5 months old, he passed. Could hearing still be developing in a baby this young? I am just so confused and am having a really hard time accepting this. Has anyone else been through this? Thanks. Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hi Alison, My daughter has a moderate to severe loss and was diagnosed at birth through newborn hearing screening also. She was a 33 week preemie, she will be six years old in 3 weeks. At the time she was born they only tested high risk babies and the hearing screening law was not passed yet. She failed the ABR in both ears at 3 weeks old, which showed at severe loss however, she had bad ear infection so the results were not valid. They put her on antibiotics for a few weeks and retested again, she failed again but this time tested profound, they wanted to redo the test before aiding her, due to they expected the test results to be better due to the infection. This went on for approx. 7 months until we had two consistent ABR test. She was finally diagnosed at 7 months with a moderate hearing loss and was finally aided ,even though she was diagnosed at birth. She had many ear infections as an infant and had alot of down time using hearing aids. She would pull her hearing aids out constantly, we couldn't keep them in. We were in denial for approx. 3 years, she responded to so much without her aids and would be able to response in the tub etc. She was such a chatter box as an infant, she would coo, mama, dada, made many sounds, and we often wondered if we were doing the right thing by putting the aids in her ears. We couldn't understand why she would pull them out if they were helping her. At three she started really taking off with putting words together, but we were concerned that her speech/articulation was off. She very hard to understand and I became her translator for everyone she talked to. I expressed my concerns to her audie that possibly she was hearing things that way or the aids weren't set right, I was told no give it time. We gave it more time and finally decided to get a second & third opinion and we were told that she was underaided and they wanted to bump her aids up. We weren't sure what to due, because she was responding and was able to hear so much with and without her aids. We finally decided we had nothing to lose and she would give us signs if they aids were too loud. From that day on, she left her aids in and never pulled them out, her speech took off in 3 weeks, we noticed a huge difference. Sorry this is so long. The reason I explained that too you was that for 3 years were weren't sure if we were doing the right thing by putting aids in her ears, because she would not keep them in, she pulled them out and she responded to so much without them. We truly did not believe that she had a hearing loss and were constantly second guessing ourself's and felt like we were on a very bad roller coaster ride and was never going to end. Without this list and the support, I don't know what I would of done, or who would understand what I was feeling. My daughter has other issues besides hearing loss, but I have learned to go with your gut, I have seconded guessed myself so many times and ended up kicking myself in the long run. I truly was not convinced my daughter had a hearing loss for about 3 years, until we finally switched again and found an audie that would listen to our concerns helped us realize that she really did have a hearing loss. This list is full of support and knowledge that will help you through this trying difficult time. Again I am sorry this is so long but I wanted you to understand what your feeling is totally normal. My daughter has a moderate to severe loss and still responses to many things when her aids are not in, it is very confusing, especially with no history of hearing loss in the family. It's hard to except especially when they are showing responses to sound. I hope you are able to find out more information with your upcoming testing. I remember those day's so well, and felt like there was never going to be a end to the testing and the roller coaster of emotions that we were going through. It does get easier to understand and accept. Knowledge is power and once you get the information you need things will start falling into place. Your not alone, we have all been where you are right now. This list is full of support and knowledge and will help you through this difficult time. Hang in there! Take Care, Colleen Mom to le Soon to be 6years (moderate-sev. loss, 's Anomaly, Asthma Allergies, Congenital Scoliosis, etc. ) 10 years (hearing, asthma and allergies) still confused > I have posted here a few times about our daughter Lucy - 4 months > old who failed her newborn hearing screening. She failed a second > one at 3 weeks of age and had an ABR done at 8 weeks that showed a > mild-moderate loss. To make a long story short, we have since found > a new audiologist that we really like and we are taking our time > with things which is fine with me. The Audiologist wants to do some > behavioral tests on her in a few weeks to see her reactions (oh we > don't have hearing aids yet). I was just wondering if there was > anyone else out there who had an infant with a mild-moderate loss. > Call it denial, but I am not convinced of her hearing loss. I > referred to a pamphlet that I was given by our state about hearing > loss and Lucy falls into zero of the categories. She coos, startles > at sounds, turns to hear different sounds and voices..etc. Why > would I think there was a loss? Am I crazy or are these normal > reactions for a baby with a mild-moderate loss? I recently spoke to > someone whose baby failed the hearing screening 4 times and finally > at 5 months old, he passed. Could hearing still be developing in a > baby this young? I am just so confused and am having a really hard > time accepting this. Has anyone else been through this? Thanks. > > Alison > > > > > 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 23, 2004 Report Share Posted August 23, 2004 Hi Alison, My daughter has a moderate to severe loss and was diagnosed at birth through newborn hearing screening also. She was a 33 week preemie, she will be six years old in 3 weeks. At the time she was born they only tested high risk babies and the hearing screening law was not passed yet. She failed the ABR in both ears at 3 weeks old, which showed at severe loss however, she had bad ear infection so the results were not valid. They put her on antibiotics for a few weeks and retested again, she failed again but this time tested profound, they wanted to redo the test before aiding her, due to they expected the test results to be better due to the infection. This went on for approx. 7 months until we had two consistent ABR test. She was finally diagnosed at 7 months with a moderate hearing loss and was finally aided ,even though she was diagnosed at birth. She had many ear infections as an infant and had alot of down time using hearing aids. She would pull her hearing aids out constantly, we couldn't keep them in. We were in denial for approx. 3 years, she responded to so much without her aids and would be able to response in the tub etc. She was such a chatter box as an infant, she would coo, mama, dada, made many sounds, and we often wondered if we were doing the right thing by putting the aids in her ears. We couldn't understand why she would pull them out if they were helping her. At three she started really taking off with putting words together, but we were concerned that her speech/articulation was off. She very hard to understand and I became her translator for everyone she talked to. I expressed my concerns to her audie that possibly she was hearing things that way or the aids weren't set right, I was told no give it time. We gave it more time and finally decided to get a second & third opinion and we were told that she was underaided and they wanted to bump her aids up. We weren't sure what to due, because she was responding and was able to hear so much with and without her aids. We finally decided we had nothing to lose and she would give us signs if they aids were too loud. From that day on, she left her aids in and never pulled them out, her speech took off in 3 weeks, we noticed a huge difference. Sorry this is so long. The reason I explained that too you was that for 3 years were weren't sure if we were doing the right thing by putting aids in her ears, because she would not keep them in, she pulled them out and she responded to so much without them. We truly did not believe that she had a hearing loss and were constantly second guessing ourself's and felt like we were on a very bad roller coaster ride and was never going to end. Without this list and the support, I don't know what I would of done, or who would understand what I was feeling. My daughter has other issues besides hearing loss, but I have learned to go with your gut, I have seconded guessed myself so many times and ended up kicking myself in the long run. I truly was not convinced my daughter had a hearing loss for about 3 years, until we finally switched again and found an audie that would listen to our concerns helped us realize that she really did have a hearing loss. This list is full of support and knowledge that will help you through this trying difficult time. Again I am sorry this is so long but I wanted you to understand what your feeling is totally normal. My daughter has a moderate to severe loss and still responses to many things when her aids are not in, it is very confusing, especially with no history of hearing loss in the family. It's hard to except especially when they are showing responses to sound. I hope you are able to find out more information with your upcoming testing. I remember those day's so well, and felt like there was never going to be a end to the testing and the roller coaster of emotions that we were going through. It does get easier to understand and accept. Knowledge is power and once you get the information you need things will start falling into place. Your not alone, we have all been where you are right now. This list is full of support and knowledge and will help you through this difficult time. Hang in there! Take Care, Colleen Mom to le Soon to be 6years (moderate-sev. loss, 's Anomaly, Asthma Allergies, Congenital Scoliosis, etc. ) 10 years (hearing, asthma and allergies) still confused > I have posted here a few times about our daughter Lucy - 4 months > old who failed her newborn hearing screening. She failed a second > one at 3 weeks of age and had an ABR done at 8 weeks that showed a > mild-moderate loss. To make a long story short, we have since found > a new audiologist that we really like and we are taking our time > with things which is fine with me. The Audiologist wants to do some > behavioral tests on her in a few weeks to see her reactions (oh we > don't have hearing aids yet). I was just wondering if there was > anyone else out there who had an infant with a mild-moderate loss. > Call it denial, but I am not convinced of her hearing loss. I > referred to a pamphlet that I was given by our state about hearing > loss and Lucy falls into zero of the categories. She coos, startles > at sounds, turns to hear different sounds and voices..etc. Why > would I think there was a loss? Am I crazy or are these normal > reactions for a baby with a mild-moderate loss? I recently spoke to > someone whose baby failed the hearing screening 4 times and finally > at 5 months old, he passed. Could hearing still be developing in a > baby this young? I am just so confused and am having a really hard > time accepting this. Has anyone else been through this? Thanks. > > Alison > > > > > 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 23, 2004 Report Share Posted August 23, 2004 > She coos, startles >at sounds, turns to hear different sounds and voices..etc. Why >would I think there was a loss? Am I crazy or are these normal >reactions for a baby with a mild-moderate loss? All babies coo, even completely deaf ones, up to a certain age. Cooing and babbling are normal developmental stages. There is a point where babies realize they are hearing themselves make the noises, and babbling may stop for children with hearing loss at that point. My daughter had a mild-moderate loss (now moderately severe). She was 5 yo before we identified it. She had completely normal speech and language development. So much depends on the shape of the hearing loss. Barbara Handley Another Path: Homeschooling Deaf and Hard-of-Hearing Children http://www.deafhomeschool.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Ahhhh yes, I understand where you are coming from. Let me share our story. was born 6 months before they started the manditory Newborn screenings. She developed like everyother child her age. She was cooing by two months, looking at us when we spoke. Seemed to be clamed by our voices. As she grew, she could hear the dog bark, the train when it went by (three blocks away), the phone, doorbell and would get startled by loud noises. She babbled at breakneck speed holding conversations with others including the inflections, but no one could understand any of it. However as time went on, something was clearly not right. This child who seemed so smart and in tune to her world was only saying about 10-15 words at 2 years old with most of those only understood by us. I thought it was a speech or processing problem and looked into EI services (the ped wasn't concerned and told us that all children develop in there own time). EI screened her and she had significant delays in receptive and expressive speech. We started speech therapy. A month later, I was asked if she's ever had her hearing tested. I told them no and although everyone on her team believed that it was not a hearing issue, we had her tested. Imagine my surprise when they told us she had a moderate/severe loss. could hear sounds. She could her my voice if I was really close to her. However she was missing all of the important sounds of speech, almost all of the consonants. That's why she spoke the way she did. She spoke as she heard. Instead of " the dog was running " she heard " e og a ru " . Her speech is still behind today because of the late diagnosis, but she is really making progress. If you feel something isn't right, then question it further. Has she had an ABR yet? I would think that would be something suggested by your ENT. It's hard to realize that your child has a loss. In fact there are still days when I wonder if she really does have a loss. But the facts say she does...and that is what I deal with. Debbie, mom to , 5, mod/sev bilat SNHL and , 2, hearing " I'm through accepting limits, Cuz someone says they're so. Some things I cannot change, But till I try I'll never know " Defying Gravity from " Wicked: The Musical " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Alison, Like the others have said, the feelings you have are very normal. My daughter has a moderate loss which was picked up at 8 months when she failed the health care nurse check. We were totally stunned when after 4 months of further testing/waiting for appointments we were told she needed hearing aids. As far as we were concerned, she could hear - she did everything she was supposed to and if anything, over-reacted to loud sounds (apparently this can be common in hearing impaired babies). She really used all the hearing she had so well - so much in fact that our EI teacher suggested we do a second ABR as behaved as if she had a lesser hearing loss (you can imagine how hard it was not to get my hopes up that time, only to have the same results yet again). Family members would question the need to persevere with replacing the aids every time she removed them and make me feel even more that maybe I was wasting my time, but I trusted the experts and kept working at it, as I wanted her to be totally oral. Now is almost 4 years old and in the past 6 months she has shown that I did the right thing by her by making sure she had those aids in as much as possible. If she has her aids out she will ask for the TV to be turned louder and ask me to repeat myself more often - as a baby, it seemed she heard everything, but she was hearing speech with certain sounds missing. When we called her " " she responded, but she probably heard " Ala " with the x sound missing. Now that she can tell me what she can't hear, it is more noticeable that she really does need those aids. She can get by ok without them (eg in the bath) but it's much easier for her to hear clearly with them. Also, when she changed from analogue aids to fully digital, she started saying s and f for the first time within 2 weeks - without aids at all, it would have taken even longer. If Lucy has a mild/mod loss, then believing the diagnosis would probably be even more difficult, especially when you can see her behaving so normally. It's so normal to wish with all your heart that they have it wrong! Every time I took for a further test, I would will her to finally prove them wrong, but each time the results were the same. Take heart - it's great that she's on track and with her early diagnosis will hopefully stay that way! Keep us posted on your progress. Regards, Kerryn , 3.9, mod; 11 months hearing Melbourne, Australia still confused > I have posted here a few times about our daughter Lucy - 4 months > old who failed her newborn hearing screening. She failed a second > one at 3 weeks of age and had an ABR done at 8 weeks that showed a > mild-moderate loss. To make a long story short, we have since found > a new audiologist that we really like and we are taking our time > with things which is fine with me. The Audiologist wants to do some > behavioral tests on her in a few weeks to see her reactions (oh we > don't have hearing aids yet). I was just wondering if there was > anyone else out there who had an infant with a mild-moderate loss. > Call it denial, but I am not convinced of her hearing loss. I > referred to a pamphlet that I was given by our state about hearing > loss and Lucy falls into zero of the categories. She coos, startles > at sounds, turns to hear different sounds and voices..etc. Why > would I think there was a loss? Am I crazy or are these normal > reactions for a baby with a mild-moderate loss? I recently spoke to > someone whose baby failed the hearing screening 4 times and finally > at 5 months old, he passed. Could hearing still be developing in a > baby this young? I am just so confused and am having a really hard > time accepting this. Has anyone else been through this? Thanks. > > Alison > > > > > 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 24, 2004 Report Share Posted August 24, 2004 Alison, I just wanted to let you know that you are not alone in your feelings. This is a pretty overwhelming time for you, one that we've all been through. My son turns 6 on Thursday; his hearing loss was identified at birth and he's worn HAs since 3 months. I won't bore you with the details of the first few years, except to say I had many of the same feelings. But now, 6 years down the line (and it happened much sooner, BTW), we're all pretty blase about the hearing aids. They are simply a fact of his life; he's a normal, active, expressive little boy, with a great personality and lots of friends. In short, he's a regular kid, and I'm a (pretty) regular, if neurotic, mom. And while people may be curious about his aids, no one has yet made fun of them (and if they did, it wouldn't be pretty). Not to say that won't change, but I can't control everything! So it does get better, and you are not alone... Stefanie mom to Ben, almost 6, severe to profound HOH, and Isabella, 9 mild loss, unaided on 8/24/04 9:46 AM, Alison DelGaudio at aldelgaudio@... wrote: > Thank you for all your support. I guess I have to admit that I am in denial > but I am glad to know I am not the only one that felt this way. One of my > closest friends just had a baby and I got so jealous to hear that her baby > passed the hearing test. I just wish this wasn't happening at all. But I am > aware that things could be so much worse. This may sound pathetic but I am > also worried that people will make fun of my baby with hearing aids...I am > afraid I will hurt someone if they say one word about it. I don't mean > literally but I am very protective of her and if anyone makes fun I will be > very upset. Is this a normal concern too or am I completely over reacting? I > want the best for my daughter and I want to do what's right - I just have so > many thoughts running around in my head its hard to think straight. Thanks > though for all the support and stories and I will be sure to keep you posted. > Thanks. > > Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Alison, I just wanted to let you know that you are not alone in your feelings. This is a pretty overwhelming time for you, one that we've all been through. My son turns 6 on Thursday; his hearing loss was identified at birth and he's worn HAs since 3 months. I won't bore you with the details of the first few years, except to say I had many of the same feelings. But now, 6 years down the line (and it happened much sooner, BTW), we're all pretty blase about the hearing aids. They are simply a fact of his life; he's a normal, active, expressive little boy, with a great personality and lots of friends. In short, he's a regular kid, and I'm a (pretty) regular, if neurotic, mom. And while people may be curious about his aids, no one has yet made fun of them (and if they did, it wouldn't be pretty). Not to say that won't change, but I can't control everything! So it does get better, and you are not alone... Stefanie mom to Ben, almost 6, severe to profound HOH, and Isabella, 9 mild loss, unaided on 8/24/04 9:46 AM, Alison DelGaudio at aldelgaudio@... wrote: > Thank you for all your support. I guess I have to admit that I am in denial > but I am glad to know I am not the only one that felt this way. One of my > closest friends just had a baby and I got so jealous to hear that her baby > passed the hearing test. I just wish this wasn't happening at all. But I am > aware that things could be so much worse. This may sound pathetic but I am > also worried that people will make fun of my baby with hearing aids...I am > afraid I will hurt someone if they say one word about it. I don't mean > literally but I am very protective of her and if anyone makes fun I will be > very upset. Is this a normal concern too or am I completely over reacting? I > want the best for my daughter and I want to do what's right - I just have so > many thoughts running around in my head its hard to think straight. Thanks > though for all the support and stories and I will be sure to keep you posted. > Thanks. > > Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Alison, I just wanted to let you know that you are not alone in your feelings. This is a pretty overwhelming time for you, one that we've all been through. My son turns 6 on Thursday; his hearing loss was identified at birth and he's worn HAs since 3 months. I won't bore you with the details of the first few years, except to say I had many of the same feelings. But now, 6 years down the line (and it happened much sooner, BTW), we're all pretty blase about the hearing aids. They are simply a fact of his life; he's a normal, active, expressive little boy, with a great personality and lots of friends. In short, he's a regular kid, and I'm a (pretty) regular, if neurotic, mom. And while people may be curious about his aids, no one has yet made fun of them (and if they did, it wouldn't be pretty). Not to say that won't change, but I can't control everything! So it does get better, and you are not alone... Stefanie mom to Ben, almost 6, severe to profound HOH, and Isabella, 9 mild loss, unaided on 8/24/04 9:46 AM, Alison DelGaudio at aldelgaudio@... wrote: > Thank you for all your support. I guess I have to admit that I am in denial > but I am glad to know I am not the only one that felt this way. One of my > closest friends just had a baby and I got so jealous to hear that her baby > passed the hearing test. I just wish this wasn't happening at all. But I am > aware that things could be so much worse. This may sound pathetic but I am > also worried that people will make fun of my baby with hearing aids...I am > afraid I will hurt someone if they say one word about it. I don't mean > literally but I am very protective of her and if anyone makes fun I will be > very upset. Is this a normal concern too or am I completely over reacting? I > want the best for my daughter and I want to do what's right - I just have so > many thoughts running around in my head its hard to think straight. Thanks > though for all the support and stories and I will be sure to keep you posted. > Thanks. > > Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi Alison, These are all normal and natural feelings that we all have had at some point. Some feelings and concerns we quickly get over and some take a while. Don't be embarrassed by them-- you need time to get used to the fact things with your daughter are different than what you envisioned. I tried to get a grip on what things I was really concerned about, then focused on those issues. One thing was how I would explain her aids to strangers; for that, I just came up with a one line response and practiced it constantly. By the time someone asked for the first time, I was ready for it! It actually felt really good to be able to answer it so confidently. Two things helped me in the beginning. First, when our kids are in that first year, every day holds something new and exciting for them. They are bursting with development! The hearing aids and all that comes with them (hearing new sounds, struggling to put them in, struggling to keep them in) is just one of the many new things they are discovering. While it is a HUGE deal to us, this is just another new thing they deal with over the course of each day. Second, and it's been said before, our kids are kids first, then hard of hearing. The more you remember that and remind others, the better off you will be. A resource I liked in the beginning was " When Your Child Is Deaf " by Luterman. While I personally don't agree with the communication method presented in the book, I still got a lot out of reading about the grief process and how to successfully deal with those emotions. It's too bad there is not a more current book and research on the parent side of hearing loss and how to respond to your emotions. Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi Alison, These are all normal and natural feelings that we all have had at some point. Some feelings and concerns we quickly get over and some take a while. Don't be embarrassed by them-- you need time to get used to the fact things with your daughter are different than what you envisioned. I tried to get a grip on what things I was really concerned about, then focused on those issues. One thing was how I would explain her aids to strangers; for that, I just came up with a one line response and practiced it constantly. By the time someone asked for the first time, I was ready for it! It actually felt really good to be able to answer it so confidently. Two things helped me in the beginning. First, when our kids are in that first year, every day holds something new and exciting for them. They are bursting with development! The hearing aids and all that comes with them (hearing new sounds, struggling to put them in, struggling to keep them in) is just one of the many new things they are discovering. While it is a HUGE deal to us, this is just another new thing they deal with over the course of each day. Second, and it's been said before, our kids are kids first, then hard of hearing. The more you remember that and remind others, the better off you will be. A resource I liked in the beginning was " When Your Child Is Deaf " by Luterman. While I personally don't agree with the communication method presented in the book, I still got a lot out of reading about the grief process and how to successfully deal with those emotions. It's too bad there is not a more current book and research on the parent side of hearing loss and how to respond to your emotions. Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi Alison, These are all normal and natural feelings that we all have had at some point. Some feelings and concerns we quickly get over and some take a while. Don't be embarrassed by them-- you need time to get used to the fact things with your daughter are different than what you envisioned. I tried to get a grip on what things I was really concerned about, then focused on those issues. One thing was how I would explain her aids to strangers; for that, I just came up with a one line response and practiced it constantly. By the time someone asked for the first time, I was ready for it! It actually felt really good to be able to answer it so confidently. Two things helped me in the beginning. First, when our kids are in that first year, every day holds something new and exciting for them. They are bursting with development! The hearing aids and all that comes with them (hearing new sounds, struggling to put them in, struggling to keep them in) is just one of the many new things they are discovering. While it is a HUGE deal to us, this is just another new thing they deal with over the course of each day. Second, and it's been said before, our kids are kids first, then hard of hearing. The more you remember that and remind others, the better off you will be. A resource I liked in the beginning was " When Your Child Is Deaf " by Luterman. While I personally don't agree with the communication method presented in the book, I still got a lot out of reading about the grief process and how to successfully deal with those emotions. It's too bad there is not a more current book and research on the parent side of hearing loss and how to respond to your emotions. Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Alison, I think what could be happening if she failed her ABR but yet she responds and doesn't act like she has a hearing loss. She could have auditory neuropathy. This can cause severe debilitating problems in regards to hearing, but they actually do hear the sound it's just that the transmittion is so delayed that often they don't understand what is being heard. What is odd is someone can have no reaction on ABR at all and yet understand everything that is said to them, and then the next person can come along and have a minimal delay and yet they don't understand anything that you say. It is so confusing but I suggest that you look into this. Your daughter could be showing a hearing loss on ABR and actually it could be that her latency values are so low they don't show up until those dB levels and yet she can still hear the sound and she may understand and be getting a clear connection. It would explain why she is not acting like a HI child and yet she shows a hearing loss. I think behavioral testing is a good idea. With AN usually you will have presant OAE's and absent acoustic reflexes. Some audiologists still don't accept that AN is an actual hearing loss since it deals with the auditory nerve, however sensorineural hearing loss deals with the inner ear and or nerve which is represented however I have ran into some debate regarding this where they insist that sensorineural hearing loss does not deal with the nerve and if the hearing loss is nerve related then it is not hearing loss it is a central hearing loss which means of the brain and they don't qualify for services as a HI person. Anyway that's not really important for you right now. I dont think you are in denial if you are not seeing any difference. Anyway I think behavioral testing would be great although you need to expect that she might be too young to get any consistant and or accurate responses. Oh one more thing many kids with AN have normal audiograms. still confused I have posted here a few times about our daughter Lucy - 4 months old who failed her newborn hearing screening. She failed a second one at 3 weeks of age and had an ABR done at 8 weeks that showed a mild-moderate loss. To make a long story short, we have since found a new audiologist that we really like and we are taking our time with things which is fine with me. The Audiologist wants to do some behavioral tests on her in a few weeks to see her reactions (oh we don't have hearing aids yet). I was just wondering if there was anyone else out there who had an infant with a mild-moderate loss. Call it denial, but I am not convinced of her hearing loss. I referred to a pamphlet that I was given by our state about hearing loss and Lucy falls into zero of the categories. She coos, startles at sounds, turns to hear different sounds and voices..etc. Why would I think there was a loss? Am I crazy or are these normal reactions for a baby with a mild-moderate loss? I recently spoke to someone whose baby failed the hearing screening 4 times and finally at 5 months old, he passed. Could hearing still be developing in a baby this young? I am just so confused and am having a really hard time accepting this. Has anyone else been through this? Thanks. Alison 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 24, 2004 Report Share Posted August 24, 2004 Alison, I think what could be happening if she failed her ABR but yet she responds and doesn't act like she has a hearing loss. She could have auditory neuropathy. This can cause severe debilitating problems in regards to hearing, but they actually do hear the sound it's just that the transmittion is so delayed that often they don't understand what is being heard. What is odd is someone can have no reaction on ABR at all and yet understand everything that is said to them, and then the next person can come along and have a minimal delay and yet they don't understand anything that you say. It is so confusing but I suggest that you look into this. Your daughter could be showing a hearing loss on ABR and actually it could be that her latency values are so low they don't show up until those dB levels and yet she can still hear the sound and she may understand and be getting a clear connection. It would explain why she is not acting like a HI child and yet she shows a hearing loss. I think behavioral testing is a good idea. With AN usually you will have presant OAE's and absent acoustic reflexes. Some audiologists still don't accept that AN is an actual hearing loss since it deals with the auditory nerve, however sensorineural hearing loss deals with the inner ear and or nerve which is represented however I have ran into some debate regarding this where they insist that sensorineural hearing loss does not deal with the nerve and if the hearing loss is nerve related then it is not hearing loss it is a central hearing loss which means of the brain and they don't qualify for services as a HI person. Anyway that's not really important for you right now. I dont think you are in denial if you are not seeing any difference. Anyway I think behavioral testing would be great although you need to expect that she might be too young to get any consistant and or accurate responses. Oh one more thing many kids with AN have normal audiograms. still confused I have posted here a few times about our daughter Lucy - 4 months old who failed her newborn hearing screening. She failed a second one at 3 weeks of age and had an ABR done at 8 weeks that showed a mild-moderate loss. To make a long story short, we have since found a new audiologist that we really like and we are taking our time with things which is fine with me. The Audiologist wants to do some behavioral tests on her in a few weeks to see her reactions (oh we don't have hearing aids yet). I was just wondering if there was anyone else out there who had an infant with a mild-moderate loss. Call it denial, but I am not convinced of her hearing loss. I referred to a pamphlet that I was given by our state about hearing loss and Lucy falls into zero of the categories. She coos, startles at sounds, turns to hear different sounds and voices..etc. Why would I think there was a loss? Am I crazy or are these normal reactions for a baby with a mild-moderate loss? I recently spoke to someone whose baby failed the hearing screening 4 times and finally at 5 months old, he passed. Could hearing still be developing in a baby this young? I am just so confused and am having a really hard time accepting this. Has anyone else been through this? Thanks. Alison 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 24, 2004 Report Share Posted August 24, 2004 Alison, I think what could be happening if she failed her ABR but yet she responds and doesn't act like she has a hearing loss. She could have auditory neuropathy. This can cause severe debilitating problems in regards to hearing, but they actually do hear the sound it's just that the transmittion is so delayed that often they don't understand what is being heard. What is odd is someone can have no reaction on ABR at all and yet understand everything that is said to them, and then the next person can come along and have a minimal delay and yet they don't understand anything that you say. It is so confusing but I suggest that you look into this. Your daughter could be showing a hearing loss on ABR and actually it could be that her latency values are so low they don't show up until those dB levels and yet she can still hear the sound and she may understand and be getting a clear connection. It would explain why she is not acting like a HI child and yet she shows a hearing loss. I think behavioral testing is a good idea. With AN usually you will have presant OAE's and absent acoustic reflexes. Some audiologists still don't accept that AN is an actual hearing loss since it deals with the auditory nerve, however sensorineural hearing loss deals with the inner ear and or nerve which is represented however I have ran into some debate regarding this where they insist that sensorineural hearing loss does not deal with the nerve and if the hearing loss is nerve related then it is not hearing loss it is a central hearing loss which means of the brain and they don't qualify for services as a HI person. Anyway that's not really important for you right now. I dont think you are in denial if you are not seeing any difference. Anyway I think behavioral testing would be great although you need to expect that she might be too young to get any consistant and or accurate responses. Oh one more thing many kids with AN have normal audiograms. still confused I have posted here a few times about our daughter Lucy - 4 months old who failed her newborn hearing screening. She failed a second one at 3 weeks of age and had an ABR done at 8 weeks that showed a mild-moderate loss. To make a long story short, we have since found a new audiologist that we really like and we are taking our time with things which is fine with me. The Audiologist wants to do some behavioral tests on her in a few weeks to see her reactions (oh we don't have hearing aids yet). I was just wondering if there was anyone else out there who had an infant with a mild-moderate loss. Call it denial, but I am not convinced of her hearing loss. I referred to a pamphlet that I was given by our state about hearing loss and Lucy falls into zero of the categories. She coos, startles at sounds, turns to hear different sounds and voices..etc. Why would I think there was a loss? Am I crazy or are these normal reactions for a baby with a mild-moderate loss? I recently spoke to someone whose baby failed the hearing screening 4 times and finally at 5 months old, he passed. Could hearing still be developing in a baby this young? I am just so confused and am having a really hard time accepting this. Has anyone else been through this? Thanks. Alison 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 24, 2004 Report Share Posted August 24, 2004 Alison, I know what you are going thru. My son also failed the newborn test 4 times. He cooed, startled, turned to sounds and appeared to like being sung to. He is now 5 almost 6. He wears hearing aids in both ears. He has a profound-severe hearing loss. I can tell that he is really deaf by the way he acts. I hope this little bit of info. helps in some way. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Alison, I know what you are going thru. My son also failed the newborn test 4 times. He cooed, startled, turned to sounds and appeared to like being sung to. He is now 5 almost 6. He wears hearing aids in both ears. He has a profound-severe hearing loss. I can tell that he is really deaf by the way he acts. I hope this little bit of info. helps in some way. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Alison, I know what you are going thru. My son also failed the newborn test 4 times. He cooed, startled, turned to sounds and appeared to like being sung to. He is now 5 almost 6. He wears hearing aids in both ears. He has a profound-severe hearing loss. I can tell that he is really deaf by the way he acts. I hope this little bit of info. helps in some way. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 In a message dated 8/24/2004 9:48:13 AM Eastern Daylight Time, aldelgaudio@... writes: I am afraid I will hurt someone if they say one word about it. I don't mean literally but I am very protective of her and if anyone makes fun I will be very upset. Is this a normal concern too or am I completely over reacting? Alison, This is a normal mom reaction and I had it long before my son's hearing loss was discovered. Our Ian was about 7 yrs old when we found he had a mild/moderate loss. But when he was a baby I was very protective. When we bought our van I refused to let my husband get tinted windows since I would not be able to see my son while I filled the tank with gas -- standing right next to the car or 10 feet away paying for the fuel. This was my actual reason for refusing the tint. (The salesman thought I was nuts, you should have seen his face.) That protective instinct was so-o-o-o-o unexpectedly strong that it astonished me. I'd heard about it, been told it would happen and I didn't believe a word of it. I'd raised my sisters and I thought I knew pretty well what was coming my way when it came to babies. One day when Ian was only about a month old, an old italian woman made a move to pick Ian up out of the grovery cart and I had such an urge to body-slam that little octagenarian right into the produce aisle. It was at that moment that I realized what was meant when people say new moms react like lionesses protecting their young. That little old lady just wanted to smell him -- babies do smell delicious. She wasn't really going to pick him up and she was very sweet telling me what beautiful eyes he'd been blessed with. But for just an instant, as she leaned in and touched my son, I swear I was ready to knock her over. Another stranger story: My hearing daughter had very little hair and what she did have was very blond. She was 2 and practically bald. On several occassions I had total strangers approach me and ask how her chemotherpay was going and telling stories of a child they knew. I felt very odd informing them that she was not sick, just bald. At which point they usually told me that when she did get hair it would be thick and curly. A classic old wives' tale. The truth is her hair is very straight and baby fine. She suddenly grew a ton of it when she was about 2½. So, don't worry. Most people will not make fun of your child. They will offer unwanted advice. They will tell stories about their own kid or niece or grandchild. They'll be sympathetic and incredibly nosey. Just like me. (grin) Your family will do the same, except unlike strangers, you're going to see them again and again and again and .... Best of luck -- Jill Quote Link to comment Share on other sites More sharing options...
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