Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Welcome , I'm Jill, an old mom, I guess, since my son is now 15. He was diagnosed later than most kids on this list -- he was 7 at the time. He has a moderate bilateral hearing loss -- about 50 dbs flat across the audiogram in both ears. Ian's loss is a progressive one, and one set of experts say he will be profoundly deaf by the time he is a young adult. In retrospect, we realize that his loss had been happening for several years before we figured it out. By the time he was diagnosed he was a great lip reader -- a skill that takes years to develop. That has turned out to be both a blessing and a curse. It was a skill that helped keep his hearing loss a secret for longer than it might have otherwise. No one suspected it because he was passing the schools screenings (the nurse would look up when she played a tone) and spoke as clearly as any hearing person. Now that he is aided and a sophomore in our local high school it's a blessing -- except when my husband and I don't want anyone to hear us and we talk quietly -- he can see what we say from across the room. Makes Christmas and birthday surprises a bit difficult! LOL There are many people here with kids who were diagnosed during infant screenings. I don't think they had those yet when our Ian was born -- and at that point, he probably would have passed anyway. The best advice you can get for right now you've already gotten from people on this list. Simply love your daughter, bond with her and adore her for the wonder she is. The rest will sort itself out. You've come to a great place for answers and advice. The collective knowledge here is amazing. So ask LOTS of questions no matter how silly you think they are. We are more than willing to answer anything or try to point you to a place where you can find answers. Share whatever you want and we'll give you our 2-cents on it. The people on this list have made such a range of choices. Some families are completely oral, some sign, some do both. Our Ian is oral not by some plan of mine, but because he was born hearing. But now we are learning ASL (American Sign Language). Some who sign have chosen Cued Speech or SEE (Signed Exact English). There are so many choices out there! The main thing to remember is there is no ONE right answer. The right one is the one that works for your Kylie and your family. So, take what we have to say with a grain of salt. Think about it, try out what sounds or feels right to you. If it works, great. If not, try something new. You'll find the collection of things that fit for Kylie just like I found those that work for our Ian. It's a process, not something that is going to happen overnight. And everyone here will acknowledge that it's scary and overwhelming at first. At first, I would stand in Ian's doorway in the middle of the night, watch him sleep and just cry because I felt so helpless and overwhelmed. I had no idea what life held for him. I wish I'd found this list back then! So go easy on yourself and give yourself permission to feel the whole range of emotions coming your way. They're all valid and " normal. " You're doing exactly what you should be doing -- looking for answers and support. That dedication should reassure you that you are indeed a wonderful mom. And just so you know that things can and will be okay, I'll brag for a moment. Ian is now 15, a HS sophomore who's latest report card (last week) says he is on honor roll. He has plenty of friends. He hikes, climbs, canoes, kayaks, is a Boy Scout (almost an Eagle), goes bowling and the movies with his friends on Saturdays and has decided that dating is dumb since when you break up you're not friends anymore. In short, he is a completely normal and average teenage boy. We simply adore him. So, enjoy all your firsts with Kylie. Coo at her even if you don't think she hears you -- she may not but she'll see your face and your smile and understand you. Play " this little piggy " and all those silly games that make us adults look and sound like idiots. She'll adore it all. Communication is SO MUCH more than simply speaking. It's body language, gestures and touching, facial expressions ... not just the noise that comes out of our mouths. Learn some of the basic baby signs and use them with her. Even hearing babies can learn to use simple signs before they master speaking actual words. Her hearing loss is only a small part of her picture. Ian's hearing loss doesn't define who he is for us or people who've just met him. It's his dry sense of humor and quiet compassion that make an impression. The bright blue hearing aids and red-white-blue swirled ear molds are just a small part of his picture. Again, welcome to the group -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 I really hate to say mild, moderate, severe, and so on. everything i read classifies it differently, her threshold is flat at about 45dB. so she misses a lot of most conversational speech. i have started to feel like that, that im missing out because when i am home, im either doing home stuff, cooking, cleaning, homework with my son, or reading up on hard of hearing children. then i realize, ive been home for like 4 hours, and really haven't just enjoyed my kids. its like that for all parents im sure. but then i feel like if i dont specifically make time to interact with her by playing and cuddling that im doing something horrible to her development. its really frustrating, i dont feel so confident, so i 2nd guess myself all the time, and i think you know, who am i to make these decisions, what do i know. then i realize, i know my daughter, and i know my family. the 1st audiologist recommended bilateral hearing aids, but i think we are going to see a 2nd audiologist, and 2nd ENT since we were referred to a local childrens hospital from the 1st ENT we seen. i really dont know what to expect, and that really bothers me. the not knowing. i was looking at some of the threads and i was a little concerned that there might not be a lot of parents with small babies or toddlers. thanks for making me feel welcome. > > > I'm , my daughter is Kylie, she's 11 weeks, > > beautiful, the first girl born to my immediate > > family in 19 years, and she is hard of hearing. My > > son is 5 with no problems other than those of a > > typical 5 year old boy. We live in Indianapolis, IN. > > My daughter was diagnosed with a frequency specific > > ABR last month. I feel like I have gotten no > > information, but I feel overwhelmed with the info I > > have rcvd. I'm hoping to either find or start a > > support group for parents like myself in my area > > soon. I cant be the only one. I'm really excited to > > find a group of other parents online, I know I will > > gain a huge amount of insight, and experiences. > > > > > > --------------------------------- > > Yahoo! DSL Something to write home about. Just > > $16.99/mo. or less > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > __________________________________ > Start your day with Yahoo! - Make it your home page! > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 I really hate to say mild, moderate, severe, and so on. everything i read classifies it differently, her threshold is flat at about 45dB. so she misses a lot of most conversational speech. i have started to feel like that, that im missing out because when i am home, im either doing home stuff, cooking, cleaning, homework with my son, or reading up on hard of hearing children. then i realize, ive been home for like 4 hours, and really haven't just enjoyed my kids. its like that for all parents im sure. but then i feel like if i dont specifically make time to interact with her by playing and cuddling that im doing something horrible to her development. its really frustrating, i dont feel so confident, so i 2nd guess myself all the time, and i think you know, who am i to make these decisions, what do i know. then i realize, i know my daughter, and i know my family. the 1st audiologist recommended bilateral hearing aids, but i think we are going to see a 2nd audiologist, and 2nd ENT since we were referred to a local childrens hospital from the 1st ENT we seen. i really dont know what to expect, and that really bothers me. the not knowing. i was looking at some of the threads and i was a little concerned that there might not be a lot of parents with small babies or toddlers. thanks for making me feel welcome. > > > I'm , my daughter is Kylie, she's 11 weeks, > > beautiful, the first girl born to my immediate > > family in 19 years, and she is hard of hearing. My > > son is 5 with no problems other than those of a > > typical 5 year old boy. We live in Indianapolis, IN. > > My daughter was diagnosed with a frequency specific > > ABR last month. I feel like I have gotten no > > information, but I feel overwhelmed with the info I > > have rcvd. I'm hoping to either find or start a > > support group for parents like myself in my area > > soon. I cant be the only one. I'm really excited to > > find a group of other parents online, I know I will > > gain a huge amount of insight, and experiences. > > > > > > --------------------------------- > > Yahoo! DSL Something to write home about. Just > > $16.99/mo. or less > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > __________________________________ > Start your day with Yahoo! - Make it your home page! > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 I really hate to say mild, moderate, severe, and so on. everything i read classifies it differently, her threshold is flat at about 45dB. so she misses a lot of most conversational speech. i have started to feel like that, that im missing out because when i am home, im either doing home stuff, cooking, cleaning, homework with my son, or reading up on hard of hearing children. then i realize, ive been home for like 4 hours, and really haven't just enjoyed my kids. its like that for all parents im sure. but then i feel like if i dont specifically make time to interact with her by playing and cuddling that im doing something horrible to her development. its really frustrating, i dont feel so confident, so i 2nd guess myself all the time, and i think you know, who am i to make these decisions, what do i know. then i realize, i know my daughter, and i know my family. the 1st audiologist recommended bilateral hearing aids, but i think we are going to see a 2nd audiologist, and 2nd ENT since we were referred to a local childrens hospital from the 1st ENT we seen. i really dont know what to expect, and that really bothers me. the not knowing. i was looking at some of the threads and i was a little concerned that there might not be a lot of parents with small babies or toddlers. thanks for making me feel welcome. > > > I'm , my daughter is Kylie, she's 11 weeks, > > beautiful, the first girl born to my immediate > > family in 19 years, and she is hard of hearing. My > > son is 5 with no problems other than those of a > > typical 5 year old boy. We live in Indianapolis, IN. > > My daughter was diagnosed with a frequency specific > > ABR last month. I feel like I have gotten no > > information, but I feel overwhelmed with the info I > > have rcvd. I'm hoping to either find or start a > > support group for parents like myself in my area > > soon. I cant be the only one. I'm really excited to > > find a group of other parents online, I know I will > > gain a huge amount of insight, and experiences. > > > > > > --------------------------------- > > Yahoo! DSL Something to write home about. Just > > $16.99/mo. or less > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > __________________________________ > Start your day with Yahoo! - Make it your home page! > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Hi , You have come to the right place for info and support. I remember all too clearly being in your shoes 17 months ago--this (discovering your child is HOH --aka Hard of Hearing) is like learning a whole new language. My daughter's first ABR indicated on the page that her hearing threshold was also at 45 dbs . HOWEVER, I discovered that early ABRs can show a 10 db or greater loss than is actaully the case. So in other words, my daughter's threshold is more like 35 dbs --NOT the 45 db that her ABR showed. Some of the parents with kids in school will be better able to tell you what to expect down the road. However, I know in my heart that it's going to be ok. That our kids will thrive and go through all the typical kid stuff. There really are NO limits. Also, there is no " one size fits all " approach to dealing with hearing loss --well meaning audiologists and ENTs sometimes forget this. Someone early on told me to trust my gut--the best advice I was ever given. I pass along that advice to you now. Take Care, (mom to Kate 18 months with a lot to say!) > > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. > > > --------------------------------- > Yahoo! DSL Something to write home about. Just $16.99/mo. or less > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Hi , You have come to the right place for info and support. I remember all too clearly being in your shoes 17 months ago--this (discovering your child is HOH --aka Hard of Hearing) is like learning a whole new language. My daughter's first ABR indicated on the page that her hearing threshold was also at 45 dbs . HOWEVER, I discovered that early ABRs can show a 10 db or greater loss than is actaully the case. So in other words, my daughter's threshold is more like 35 dbs --NOT the 45 db that her ABR showed. Some of the parents with kids in school will be better able to tell you what to expect down the road. However, I know in my heart that it's going to be ok. That our kids will thrive and go through all the typical kid stuff. There really are NO limits. Also, there is no " one size fits all " approach to dealing with hearing loss --well meaning audiologists and ENTs sometimes forget this. Someone early on told me to trust my gut--the best advice I was ever given. I pass along that advice to you now. Take Care, (mom to Kate 18 months with a lot to say!) > > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. > > > --------------------------------- > Yahoo! DSL Something to write home about. Just $16.99/mo. or less > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Hi , You have come to the right place for info and support. I remember all too clearly being in your shoes 17 months ago--this (discovering your child is HOH --aka Hard of Hearing) is like learning a whole new language. My daughter's first ABR indicated on the page that her hearing threshold was also at 45 dbs . HOWEVER, I discovered that early ABRs can show a 10 db or greater loss than is actaully the case. So in other words, my daughter's threshold is more like 35 dbs --NOT the 45 db that her ABR showed. Some of the parents with kids in school will be better able to tell you what to expect down the road. However, I know in my heart that it's going to be ok. That our kids will thrive and go through all the typical kid stuff. There really are NO limits. Also, there is no " one size fits all " approach to dealing with hearing loss --well meaning audiologists and ENTs sometimes forget this. Someone early on told me to trust my gut--the best advice I was ever given. I pass along that advice to you now. Take Care, (mom to Kate 18 months with a lot to say!) > > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. > > > --------------------------------- > Yahoo! DSL Something to write home about. Just $16.99/mo. or less > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Go to as many ENT's and Audiologists until you find the right one for your family. It took us about three tries and then we found her - then she moved across the country :-( Also, don't let the doctors scare you into thinking that your daughter will be delayed in her speech or other areas - because that is NOT always the case. We were terrified that our daughter would be so delayed in her speech and she's actually ahead! If your daughter's ABR shows a 45db loss, than she is hearing more than you think she is. I am pretty sure that normal conversational speech is more in the 50-60db range. When it comes to hearing tests/ABR's - my opinion is that they are not the final answer. Only time will tell what your daughter can or can't hear. Our daughter hears us whisper, unaided I might add. So don't take the doctors word as final - you know your daughter best and she will eventually be able to tell you what she can and can't hear. I think that is the single hardest thing for us who have babies with hearing loss. They can't tell us what they hear!! It is so frustrating and it makes it really difficult. All of the emotions you are feeling are completely normal and they will go away and they will come back. It's normal!! Anyway, keep us posted on your progress and hang in there!! Alison --- abaugh7080 wrote: > I really hate to say mild, moderate, severe, and so > on. everything i > read classifies it differently, her threshold is > flat at about 45dB. > so she misses a lot of most conversational speech. > i have started to feel like that, that im missing > out because when i > am home, im either doing home stuff, cooking, > cleaning, homework with > my son, or reading up on hard of hearing children. > then i realize, > ive been home for like 4 hours, and really haven't > just enjoyed my > kids. its like that for all parents im sure. but > then i feel like if > i dont specifically make time to interact with her > by playing and > cuddling that im doing something horrible to her > development. its > really frustrating, i dont feel so confident, so i > 2nd guess myself > all the time, and i think you know, who am i to make > these decisions, > what do i know. then i realize, i know my daughter, > and i know my > family. > the 1st audiologist recommended bilateral hearing > aids, but i think > we are going to see a 2nd audiologist, and 2nd ENT > since we were > referred to a local childrens hospital from the 1st > ENT we seen. i > really dont know what to expect, and that really > bothers me. the not > knowing. > i was looking at some of the threads and i was a > little concerned > that there might not be a lot of parents with small > babies or > toddlers. > thanks for making me feel welcome. > > > > > > > > > > I'm , my daughter is Kylie, she's 11 > weeks, > > > beautiful, the first girl born to my immediate > > > family in 19 years, and she is hard of hearing. > My > > > son is 5 with no problems other than those of a > > > typical 5 year old boy. We live in Indianapolis, > IN. > > > My daughter was diagnosed with a frequency > specific > > > ABR last month. I feel like I have gotten no > > > information, but I feel overwhelmed with the > info I > > > have rcvd. I'm hoping to either find or start a > > > support group for parents like myself in my area > > > soon. I cant be the only one. I'm really excited > to > > > find a group of other parents online, I know I > will > > > gain a huge amount of insight, and experiences. > > > > > > > > > --------------------------------- > > > Yahoo! DSL Something to write home about. Just > > > $16.99/mo. or less > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > __________________________________ > > Start your day with Yahoo! - Make it your home > page! > > http://www.yahoo.com/r/hs > > > > > > > __________________________________ Start your day with Yahoo! - Make it your home page! http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 We found out that our second child had hearing loss when he was born. He failed the screening and was retested at 4 weeks. He got his first set of hearing aids when he was 9 weeks old. It was tough at first - as soon as he got new ear moulds, he out grew them. And they were hard to keep in. We would take them out when we went out in public b/c we were so afraid of losing them. Once, in Target, one aid was missing for about ten minutes while I retraced my steps. Quite a nightmare! We have come to accept the fact that at some point in his life, he will lose at least one aid. He is now 23 months old and we don't give his " ears " a second thought. If they come loose, he shouts " ear, ear " . And if he ever takes them out, he brings them to us. I remember crying for a week after we found out there was a problem. We'd bang pots around him to see if he would flinch and I'd cry some more if he didn't. But we got used to the idea and embraced everything that he has become. He is a wonderful, typical, toddler and can be T-R-O-U-B-L-E! But so cute! Enjoy every minute and try to not be consumed with looking stuff up - most of it will come to you naturally as a parent just like everything else. This group has been very helpful and supportive. Good luck! :-) Dianne Mama to Jack, 4 - hearing and anxiously waiting for Santa; Liam, 2 next month - mild/mod SNHL and up to no good; , 4 months - hearing, and spoiled by her brothers Hi to all > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first > girl born to my immediate family in 19 years, and she is hard of hearing. > My son is 5 with no problems other than those of a typical 5 year old boy. > We live in Indianapolis, IN. My daughter was diagnosed with a frequency > specific ABR last month. I feel like I have gotten no information, but I > feel overwhelmed with the info I have rcvd. I'm hoping to either find or > start a support group for parents like myself in my area soon. I cant be > the only one. I'm really excited to find a group of other parents online, > I know I will gain a huge amount of insight, and experiences. > > > --------------------------------- > Yahoo! DSL Something to write home about. Just $16.99/mo. or less > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 We found out that our second child had hearing loss when he was born. He failed the screening and was retested at 4 weeks. He got his first set of hearing aids when he was 9 weeks old. It was tough at first - as soon as he got new ear moulds, he out grew them. And they were hard to keep in. We would take them out when we went out in public b/c we were so afraid of losing them. Once, in Target, one aid was missing for about ten minutes while I retraced my steps. Quite a nightmare! We have come to accept the fact that at some point in his life, he will lose at least one aid. He is now 23 months old and we don't give his " ears " a second thought. If they come loose, he shouts " ear, ear " . And if he ever takes them out, he brings them to us. I remember crying for a week after we found out there was a problem. We'd bang pots around him to see if he would flinch and I'd cry some more if he didn't. But we got used to the idea and embraced everything that he has become. He is a wonderful, typical, toddler and can be T-R-O-U-B-L-E! But so cute! Enjoy every minute and try to not be consumed with looking stuff up - most of it will come to you naturally as a parent just like everything else. This group has been very helpful and supportive. Good luck! :-) Dianne Mama to Jack, 4 - hearing and anxiously waiting for Santa; Liam, 2 next month - mild/mod SNHL and up to no good; , 4 months - hearing, and spoiled by her brothers Hi to all > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first > girl born to my immediate family in 19 years, and she is hard of hearing. > My son is 5 with no problems other than those of a typical 5 year old boy. > We live in Indianapolis, IN. My daughter was diagnosed with a frequency > specific ABR last month. I feel like I have gotten no information, but I > feel overwhelmed with the info I have rcvd. I'm hoping to either find or > start a support group for parents like myself in my area soon. I cant be > the only one. I'm really excited to find a group of other parents online, > I know I will gain a huge amount of insight, and experiences. > > > --------------------------------- > Yahoo! DSL Something to write home about. Just $16.99/mo. or less > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 We found out that our second child had hearing loss when he was born. He failed the screening and was retested at 4 weeks. He got his first set of hearing aids when he was 9 weeks old. It was tough at first - as soon as he got new ear moulds, he out grew them. And they were hard to keep in. We would take them out when we went out in public b/c we were so afraid of losing them. Once, in Target, one aid was missing for about ten minutes while I retraced my steps. Quite a nightmare! We have come to accept the fact that at some point in his life, he will lose at least one aid. He is now 23 months old and we don't give his " ears " a second thought. If they come loose, he shouts " ear, ear " . And if he ever takes them out, he brings them to us. I remember crying for a week after we found out there was a problem. We'd bang pots around him to see if he would flinch and I'd cry some more if he didn't. But we got used to the idea and embraced everything that he has become. He is a wonderful, typical, toddler and can be T-R-O-U-B-L-E! But so cute! Enjoy every minute and try to not be consumed with looking stuff up - most of it will come to you naturally as a parent just like everything else. This group has been very helpful and supportive. Good luck! :-) Dianne Mama to Jack, 4 - hearing and anxiously waiting for Santa; Liam, 2 next month - mild/mod SNHL and up to no good; , 4 months - hearing, and spoiled by her brothers Hi to all > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first > girl born to my immediate family in 19 years, and she is hard of hearing. > My son is 5 with no problems other than those of a typical 5 year old boy. > We live in Indianapolis, IN. My daughter was diagnosed with a frequency > specific ABR last month. I feel like I have gotten no information, but I > feel overwhelmed with the info I have rcvd. I'm hoping to either find or > start a support group for parents like myself in my area soon. I cant be > the only one. I'm really excited to find a group of other parents online, > I know I will gain a huge amount of insight, and experiences. > > > --------------------------------- > Yahoo! DSL Something to write home about. Just $16.99/mo. or less > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Hello! I have been exactly where you are, and it definitely does get better. My youngest daughter who will be one on Tuesday has a similar hearing loss. She got hearing aids at about 11 weeks old. The fitting for the aids was so amazing. Make sure you take time to see how she reacts; I missed some of my daughter's initial reaction, but within moments she was craning her head and whole body around to figure out where all these sounds were coming from. I do feel guilty at times about not doing enough for my daughter, but I imagine I would feel guilty in some regard no matter what, just because she is the second child and I am learning to split my time between two kids (as well as housework, etc.) I read a million things myself at first. I still keep reading, but I try to remind myself that I have lots of time; I don't have to know everything right this minute. My daughter is currently signing about 10-20 words, often using the first sound of the words along with the sign. She has speech therapy once a month right now. We are at the point where I am worrying about which sounds she is making more than what she is hearing since she seems to be close to age level on the receptive communication side of things. I have been asked if she is saying any words and I think that depends upon how someone defines words. She definitely says " bir " for bird most of the time and often says " da " at least once for Daddy and is saying " ma ma " , but mostly to mean she wants something, not to mean me. One thing that has helped me with her is wearing her in a sling, baby front carrier, and now a hip carrier. I feel like she catches more of my conversation when I have to be out and about for errands and such even when I forget to talk directly to her and am just talking with her sister. > I really hate to say mild, moderate, severe, and so on. everything i > read classifies it differently, her threshold is flat at about 45dB. > so she misses a lot of most conversational speech. > i have started to feel like that, that im missing out because when i > am home, im either doing home stuff, cooking, cleaning, homework with > my son, or reading up on hard of hearing children. then i realize, > ive been home for like 4 hours, and really haven't just enjoyed my > kids. its like that for all parents im sure. but then i feel like if > i dont specifically make time to interact with her by playing and > cuddling that im doing something horrible to her development. its > really frustrating, i dont feel so confident, so i 2nd guess myself > all the time, and i think you know, who am i to make these decisions, > what do i know. then i realize, i know my daughter, and i know my > family. > the 1st audiologist recommended bilateral hearing aids, but i think > we are going to see a 2nd audiologist, and 2nd ENT since we were > referred to a local childrens hospital from the 1st ENT we seen. i > really dont know what to expect, and that really bothers me. the not > knowing. > i was looking at some of the threads and i was a little concerned > that there might not be a lot of parents with small babies or > toddlers. > thanks for making me feel welcome. > > > > > > > > > > I'm , my daughter is Kylie, she's 11 weeks, > > > beautiful, the first girl born to my immediate > > > family in 19 years, and she is hard of hearing. My > > > son is 5 with no problems other than those of a > > > typical 5 year old boy. We live in Indianapolis, IN. > > > My daughter was diagnosed with a frequency specific > > > ABR last month. I feel like I have gotten no > > > information, but I feel overwhelmed with the info I > > > have rcvd. I'm hoping to either find or start a > > > support group for parents like myself in my area > > > soon. I cant be the only one. I'm really excited to > > > find a group of other parents online, I know I will > > > gain a huge amount of insight, and experiences. > > > > > > > > > --------------------------------- > > > Yahoo! DSL Something to write home about. Just > > > $16.99/mo. or less > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > __________________________________ > > Start your day with Yahoo! - Make it your home page! > > http://www.yahoo.com/r/hs > > > > > > > > > > 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 December 4, 2005 Report Share Posted December 4, 2005 Hello! I have been exactly where you are, and it definitely does get better. My youngest daughter who will be one on Tuesday has a similar hearing loss. She got hearing aids at about 11 weeks old. The fitting for the aids was so amazing. Make sure you take time to see how she reacts; I missed some of my daughter's initial reaction, but within moments she was craning her head and whole body around to figure out where all these sounds were coming from. I do feel guilty at times about not doing enough for my daughter, but I imagine I would feel guilty in some regard no matter what, just because she is the second child and I am learning to split my time between two kids (as well as housework, etc.) I read a million things myself at first. I still keep reading, but I try to remind myself that I have lots of time; I don't have to know everything right this minute. My daughter is currently signing about 10-20 words, often using the first sound of the words along with the sign. She has speech therapy once a month right now. We are at the point where I am worrying about which sounds she is making more than what she is hearing since she seems to be close to age level on the receptive communication side of things. I have been asked if she is saying any words and I think that depends upon how someone defines words. She definitely says " bir " for bird most of the time and often says " da " at least once for Daddy and is saying " ma ma " , but mostly to mean she wants something, not to mean me. One thing that has helped me with her is wearing her in a sling, baby front carrier, and now a hip carrier. I feel like she catches more of my conversation when I have to be out and about for errands and such even when I forget to talk directly to her and am just talking with her sister. > I really hate to say mild, moderate, severe, and so on. everything i > read classifies it differently, her threshold is flat at about 45dB. > so she misses a lot of most conversational speech. > i have started to feel like that, that im missing out because when i > am home, im either doing home stuff, cooking, cleaning, homework with > my son, or reading up on hard of hearing children. then i realize, > ive been home for like 4 hours, and really haven't just enjoyed my > kids. its like that for all parents im sure. but then i feel like if > i dont specifically make time to interact with her by playing and > cuddling that im doing something horrible to her development. its > really frustrating, i dont feel so confident, so i 2nd guess myself > all the time, and i think you know, who am i to make these decisions, > what do i know. then i realize, i know my daughter, and i know my > family. > the 1st audiologist recommended bilateral hearing aids, but i think > we are going to see a 2nd audiologist, and 2nd ENT since we were > referred to a local childrens hospital from the 1st ENT we seen. i > really dont know what to expect, and that really bothers me. the not > knowing. > i was looking at some of the threads and i was a little concerned > that there might not be a lot of parents with small babies or > toddlers. > thanks for making me feel welcome. > > > > > > > > > > I'm , my daughter is Kylie, she's 11 weeks, > > > beautiful, the first girl born to my immediate > > > family in 19 years, and she is hard of hearing. My > > > son is 5 with no problems other than those of a > > > typical 5 year old boy. We live in Indianapolis, IN. > > > My daughter was diagnosed with a frequency specific > > > ABR last month. I feel like I have gotten no > > > information, but I feel overwhelmed with the info I > > > have rcvd. I'm hoping to either find or start a > > > support group for parents like myself in my area > > > soon. I cant be the only one. I'm really excited to > > > find a group of other parents online, I know I will > > > gain a huge amount of insight, and experiences. > > > > > > > > > --------------------------------- > > > Yahoo! DSL Something to write home about. Just > > > $16.99/mo. or less > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > __________________________________ > > Start your day with Yahoo! - Make it your home page! > > http://www.yahoo.com/r/hs > > > > > > > > > > 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 December 4, 2005 Report Share Posted December 4, 2005 Hello! I have been exactly where you are, and it definitely does get better. My youngest daughter who will be one on Tuesday has a similar hearing loss. She got hearing aids at about 11 weeks old. The fitting for the aids was so amazing. Make sure you take time to see how she reacts; I missed some of my daughter's initial reaction, but within moments she was craning her head and whole body around to figure out where all these sounds were coming from. I do feel guilty at times about not doing enough for my daughter, but I imagine I would feel guilty in some regard no matter what, just because she is the second child and I am learning to split my time between two kids (as well as housework, etc.) I read a million things myself at first. I still keep reading, but I try to remind myself that I have lots of time; I don't have to know everything right this minute. My daughter is currently signing about 10-20 words, often using the first sound of the words along with the sign. She has speech therapy once a month right now. We are at the point where I am worrying about which sounds she is making more than what she is hearing since she seems to be close to age level on the receptive communication side of things. I have been asked if she is saying any words and I think that depends upon how someone defines words. She definitely says " bir " for bird most of the time and often says " da " at least once for Daddy and is saying " ma ma " , but mostly to mean she wants something, not to mean me. One thing that has helped me with her is wearing her in a sling, baby front carrier, and now a hip carrier. I feel like she catches more of my conversation when I have to be out and about for errands and such even when I forget to talk directly to her and am just talking with her sister. > I really hate to say mild, moderate, severe, and so on. everything i > read classifies it differently, her threshold is flat at about 45dB. > so she misses a lot of most conversational speech. > i have started to feel like that, that im missing out because when i > am home, im either doing home stuff, cooking, cleaning, homework with > my son, or reading up on hard of hearing children. then i realize, > ive been home for like 4 hours, and really haven't just enjoyed my > kids. its like that for all parents im sure. but then i feel like if > i dont specifically make time to interact with her by playing and > cuddling that im doing something horrible to her development. its > really frustrating, i dont feel so confident, so i 2nd guess myself > all the time, and i think you know, who am i to make these decisions, > what do i know. then i realize, i know my daughter, and i know my > family. > the 1st audiologist recommended bilateral hearing aids, but i think > we are going to see a 2nd audiologist, and 2nd ENT since we were > referred to a local childrens hospital from the 1st ENT we seen. i > really dont know what to expect, and that really bothers me. the not > knowing. > i was looking at some of the threads and i was a little concerned > that there might not be a lot of parents with small babies or > toddlers. > thanks for making me feel welcome. > > > > > > > > > > I'm , my daughter is Kylie, she's 11 weeks, > > > beautiful, the first girl born to my immediate > > > family in 19 years, and she is hard of hearing. My > > > son is 5 with no problems other than those of a > > > typical 5 year old boy. We live in Indianapolis, IN. > > > My daughter was diagnosed with a frequency specific > > > ABR last month. I feel like I have gotten no > > > information, but I feel overwhelmed with the info I > > > have rcvd. I'm hoping to either find or start a > > > support group for parents like myself in my area > > > soon. I cant be the only one. I'm really excited to > > > find a group of other parents online, I know I will > > > gain a huge amount of insight, and experiences. > > > > > > > > > --------------------------------- > > > Yahoo! DSL Something to write home about. Just > > > $16.99/mo. or less > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > __________________________________ > > Start your day with Yahoo! - Make it your home page! > > http://www.yahoo.com/r/hs > > > > > > > > > > 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 December 5, 2005 Report Share Posted December 5, 2005 Hi - welcome! I'm so glad you found us. Others who have kids who were diagnosed as infants have given you good answers to your questions. I have two boys who are 13 and 11 (that's years!). Both are deaf. Until last month, both wore hearing aids and have been fully mainstreamed in our town's public schools. My older son, Tom (Mr. Adolescent) just had cochlear implant surgery last month - Nov. 16 - and we're awaiting hook-up. He had his implant done now because he just had a pretty significant drop in his hearing. He currently is using one hearing aid. My younger son is Sam. Sam's 11 and in 5th grade. He just tested for and earned his black stripe in taekwondo! Sam told me he likes having a black stripe (which is the belt just below black) since all the girls asked him about it. My baby's growing up way too fast! Tom also has a black stripe in taekwondo... Tom wasn't diagnosed with his hearing loss until he was a little over 3 years old; Sam followed at 15 months of age 6 months later - it was completely overwhelming! I'd look at those tiny hearing aids and wonder how in the world we were going to manage it. Now, ten years later, it's just part of things and is our reality. Tom attended a teen function for teens with chronic health conditions last Thursday and was telling me some about what they talked about. One of the teens said that his situation (I think maybe diabetes) made hm feel isolated from other kids at school. Tom said he used to feel that way but now his hearing loss is just part of who he is - and that he wouldn't have known many of the people he cares about if it weren't for his hearing loss. Isn't that cool? Some days I swear he's a 35 year old in a 13 year old body... Keep on asking questions - I'm glad you're here. Barbara amanda baugh wrote: > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first > girl born to my immediate family in 19 years, and she is hard of > hearing. My son is 5 with no problems other than those of a typical 5 > year old boy. We live in Indianapolis, IN. My daughter was diagnosed > with a frequency specific ABR last month. I feel like I have gotten no > information, but I feel overwhelmed with the info I have rcvd. I'm > hoping to either find or start a support group for parents like myself > in my area soon. I cant be the only one. I'm really excited to find a > group of other parents online, I know I will gain a huge amount of > insight, and experiences. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Hi - welcome! I'm so glad you found us. Others who have kids who were diagnosed as infants have given you good answers to your questions. I have two boys who are 13 and 11 (that's years!). Both are deaf. Until last month, both wore hearing aids and have been fully mainstreamed in our town's public schools. My older son, Tom (Mr. Adolescent) just had cochlear implant surgery last month - Nov. 16 - and we're awaiting hook-up. He had his implant done now because he just had a pretty significant drop in his hearing. He currently is using one hearing aid. My younger son is Sam. Sam's 11 and in 5th grade. He just tested for and earned his black stripe in taekwondo! Sam told me he likes having a black stripe (which is the belt just below black) since all the girls asked him about it. My baby's growing up way too fast! Tom also has a black stripe in taekwondo... Tom wasn't diagnosed with his hearing loss until he was a little over 3 years old; Sam followed at 15 months of age 6 months later - it was completely overwhelming! I'd look at those tiny hearing aids and wonder how in the world we were going to manage it. Now, ten years later, it's just part of things and is our reality. Tom attended a teen function for teens with chronic health conditions last Thursday and was telling me some about what they talked about. One of the teens said that his situation (I think maybe diabetes) made hm feel isolated from other kids at school. Tom said he used to feel that way but now his hearing loss is just part of who he is - and that he wouldn't have known many of the people he cares about if it weren't for his hearing loss. Isn't that cool? Some days I swear he's a 35 year old in a 13 year old body... Keep on asking questions - I'm glad you're here. Barbara amanda baugh wrote: > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first > girl born to my immediate family in 19 years, and she is hard of > hearing. My son is 5 with no problems other than those of a typical 5 > year old boy. We live in Indianapolis, IN. My daughter was diagnosed > with a frequency specific ABR last month. I feel like I have gotten no > information, but I feel overwhelmed with the info I have rcvd. I'm > hoping to either find or start a support group for parents like myself > in my area soon. I cant be the only one. I'm really excited to find a > group of other parents online, I know I will gain a huge amount of > insight, and experiences. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Hi - welcome! I'm so glad you found us. Others who have kids who were diagnosed as infants have given you good answers to your questions. I have two boys who are 13 and 11 (that's years!). Both are deaf. Until last month, both wore hearing aids and have been fully mainstreamed in our town's public schools. My older son, Tom (Mr. Adolescent) just had cochlear implant surgery last month - Nov. 16 - and we're awaiting hook-up. He had his implant done now because he just had a pretty significant drop in his hearing. He currently is using one hearing aid. My younger son is Sam. Sam's 11 and in 5th grade. He just tested for and earned his black stripe in taekwondo! Sam told me he likes having a black stripe (which is the belt just below black) since all the girls asked him about it. My baby's growing up way too fast! Tom also has a black stripe in taekwondo... Tom wasn't diagnosed with his hearing loss until he was a little over 3 years old; Sam followed at 15 months of age 6 months later - it was completely overwhelming! I'd look at those tiny hearing aids and wonder how in the world we were going to manage it. Now, ten years later, it's just part of things and is our reality. Tom attended a teen function for teens with chronic health conditions last Thursday and was telling me some about what they talked about. One of the teens said that his situation (I think maybe diabetes) made hm feel isolated from other kids at school. Tom said he used to feel that way but now his hearing loss is just part of who he is - and that he wouldn't have known many of the people he cares about if it weren't for his hearing loss. Isn't that cool? Some days I swear he's a 35 year old in a 13 year old body... Keep on asking questions - I'm glad you're here. Barbara amanda baugh wrote: > I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first > girl born to my immediate family in 19 years, and she is hard of > hearing. My son is 5 with no problems other than those of a typical 5 > year old boy. We live in Indianapolis, IN. My daughter was diagnosed > with a frequency specific ABR last month. I feel like I have gotten no > information, but I feel overwhelmed with the info I have rcvd. I'm > hoping to either find or start a support group for parents like myself > in my area soon. I cant be the only one. I'm really excited to find a > group of other parents online, I know I will gain a huge amount of > insight, and experiences. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Welcome , It may seem very overwhelming right now, but you are on the right track to finding the support you need. I am glad you found this group. LINDA A. Hi to all I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. --------------------------------- Yahoo! DSL Something to write home about. Just $16.99/mo. or less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Welcome , It may seem very overwhelming right now, but you are on the right track to finding the support you need. I am glad you found this group. LINDA A. Hi to all I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. --------------------------------- Yahoo! DSL Something to write home about. Just $16.99/mo. or less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Welcome , It may seem very overwhelming right now, but you are on the right track to finding the support you need. I am glad you found this group. LINDA A. Hi to all I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. --------------------------------- Yahoo! DSL Something to write home about. Just $16.99/mo. or less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2005 Report Share Posted December 6, 2005 HI , I'm Debbie, mom to and . is 6 and has a moderate sensorineural hearing loss in both ears. She currently attends a first grade in a mianstreamed classroom. She is the only hard of hearing child wearing hearing aids at her school. My son is 3 and can hear.....he just doesn't choose to ;o) For support, you may want to try here http://www.handsandvoices.org/chapters/indiana.htm Hands & Voices is a national organization with state chapters. You are in one of several states that has a chapter. Hands & Voices motto is " what works for your child is what makes the choice right " . They do not support one communication method over others, which really makes it a great place to start for support. You may also want to contact the Indiana School for the Deaf and see if they have any parent support groups. Good Luck, Debbie amanda baugh wrote: I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. Some men see things as they are and ask why. Others dream things that never were and ask why not. G.B Shaw --------------------------------- Yahoo! Personals Let fate take it's course directly to your email. See who's waiting for you Yahoo! Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2005 Report Share Posted December 6, 2005 HI , I'm Debbie, mom to and . is 6 and has a moderate sensorineural hearing loss in both ears. She currently attends a first grade in a mianstreamed classroom. She is the only hard of hearing child wearing hearing aids at her school. My son is 3 and can hear.....he just doesn't choose to ;o) For support, you may want to try here http://www.handsandvoices.org/chapters/indiana.htm Hands & Voices is a national organization with state chapters. You are in one of several states that has a chapter. Hands & Voices motto is " what works for your child is what makes the choice right " . They do not support one communication method over others, which really makes it a great place to start for support. You may also want to contact the Indiana School for the Deaf and see if they have any parent support groups. Good Luck, Debbie amanda baugh wrote: I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. Some men see things as they are and ask why. Others dream things that never were and ask why not. G.B Shaw --------------------------------- Yahoo! Personals Let fate take it's course directly to your email. See who's waiting for you Yahoo! Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2005 Report Share Posted December 6, 2005 HI , I'm Debbie, mom to and . is 6 and has a moderate sensorineural hearing loss in both ears. She currently attends a first grade in a mianstreamed classroom. She is the only hard of hearing child wearing hearing aids at her school. My son is 3 and can hear.....he just doesn't choose to ;o) For support, you may want to try here http://www.handsandvoices.org/chapters/indiana.htm Hands & Voices is a national organization with state chapters. You are in one of several states that has a chapter. Hands & Voices motto is " what works for your child is what makes the choice right " . They do not support one communication method over others, which really makes it a great place to start for support. You may also want to contact the Indiana School for the Deaf and see if they have any parent support groups. Good Luck, Debbie amanda baugh wrote: I'm , my daughter is Kylie, she's 11 weeks, beautiful, the first girl born to my immediate family in 19 years, and she is hard of hearing. My son is 5 with no problems other than those of a typical 5 year old boy. We live in Indianapolis, IN. My daughter was diagnosed with a frequency specific ABR last month. I feel like I have gotten no information, but I feel overwhelmed with the info I have rcvd. I'm hoping to either find or start a support group for parents like myself in my area soon. I cant be the only one. I'm really excited to find a group of other parents online, I know I will gain a huge amount of insight, and experiences. Some men see things as they are and ask why. Others dream things that never were and ask why not. G.B Shaw --------------------------------- Yahoo! Personals Let fate take it's course directly to your email. See who's waiting for you Yahoo! Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 My name is Overman (ken is fine) 64 yrs. old and living in Lompoc, Ca. have PF since Nov. 05 found the support group while surffing the net for more information on PF on the pulmonary fibrosis foundation web site and have been reading a lot of the emails and have found them every interesting and informative. just got up from my nap and am off for my walk I do about 1 mile a day to a friends barber shop where i have a bottle of wine watig for me. it's my incentive to walk and my reward for getting there lol. so, i'm out of here, sure would love to hear from all of you. and relate some of my experences with PF. thanks for reading ken Quote Link to comment Share on other sites More sharing options...
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