Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 We went to Savonlinna yesterday, sold our motorcycle and dropped it off with the new owners. Harsko's brother and wife drome us home today, and we stayed with them last night. Anyhow, to make a long story short... Everyone wanted to go out to the night club, so I got dragged along kicking and screaming. I just had a feeling that something was going to happen. I had one shot of cranberry vodka, and a "long drink" which is GF and much like a hard cider. Nothing more. A few friends and my step son showed up, so we all went to the dance floor. A SUPPOSED friend had a glass she was passing around and told everyone it was cranberry vodka, so I took a sip, NOT cranberry, not vodka... BEER!!!! It came up immediately on me, another friend got me to the ladies room where I spent the remainder of the evening. Riika, who took me to the ladies room, went back to the dance floor to ask why this person did this KNOWING I am Celiac... her reply was "I didnt thinkshe really was". Riika showed her the door promptly and told her it was not funny, and if she showed up at the door, she would be escorted pout the hard way (ie, face first on the pavement). I feel bloated and lousy, and I know tonight or tomorrow, there will be hell to pay. Is it wrong of me to wish this person was living in my body right now? Wrong to wish her to feel what she has put on me? I hope she enjoyed her joke. I sure am not. Thanks for letting me vent..... Best! Cassi happy to be home in... Gluten free downtown Imatra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 That is down-right dirty pool. I'm wishing her time in your body right now. I don't get the throwing up, but I get severe stomach pains, so I know how bad that can be....I don't have to deal with that, only people not aware of how LITTLE it takes. Sorry for your situation. Have you tried tonic water after a gluten-ing? --loriann aka Victree the Christian clown -------------- Original message -------------- We went to Savonlinna yesterday, sold our motorcycle and dropped it off with the new owners. Harsko's brother and wife drome us home today, and we stayed with them last night. Anyhow, to make a long story short... Everyone wanted to go out to the night club, so I got dragged along kicking and screaming. I just had a feeling that something was going to happen. I had one shot of cranberry vodka, and a "long drink" which is GF and much like a hard cider. Nothing more. A few friends and my step son showed up, so we all went to the dance floor. A SUPPOSED friend had a glass she was passing around and told everyone it was cranberry vodka, so I took a sip, NOT cranberry, not vodka... BEER!!!! It came up immediately on me, another friend got me to the ladies room where I spent the remainder of the evening. Riika, who took me to the ladies room, went back to the dance floor to ask why this person did this KNOWING I am Celiac... her reply was "I didnt thinkshe really was". Riika showed her the door promptly and told her it was not funny, and if she showed up at the door, she would be escorted pout the hard way (ie, face first on the pavement). I feel bloated and lousy, and I know tonight or tomorrow, there will be hell to pay. Is it wrong of me to wish this person was living in my body right now? Wrong to wish her to feel what she has put on me? I hope she enjoyed her joke. I sure am not. Thanks for letting me vent..... Best! Cassi happy to be home in... Gluten free downtown Imatra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 That's just not funny. Why would someone fake celiac in the first place??? Did she actually think you enjoyed not being able to drink and eat what everyone else can? Good grief. That was just immature and cruel of her. I am glad they asked her to leave. Zanna http://groups.yahoo.com/group/Art_on_A_Budget/ My daily rantings! www.zannasstory.blogspot.com My picture trail: www.picturetrail.com/xanadoodles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Wow, sorry that happened to you Cassi, that was really really rude and mean. I wish she'd feel sick too so don't feel bad. lol. Hope you're feeling better ASAP! KATIE B.Happy Summer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Our son will be 12yo on Saturday. He was diagnosed with a severe/profound hearing loss when he was five months old, but ear tubes brought that up to moderate loss, and he has been wearing hearing aids since he was 11 months old. He also has low muscle tone, sensory-integration issues, ADHD (hyperactive), and Asperger's Syndrome. We tried for years to find answers and reasons, but without luck. We did have a few tests done for possible genetic conditions, but they all came back negative. He has many symptoms that are common with premature babies, but he was born after his due date (and the due date was confirmed with ultrasound). The pregnancy was totally normal, and the delivery was fast and med-free--not even an epidural. He had Apgars of 9 and 10, and was well enough that they let us go home early without any reservations. While we are still willing to pursue other possible diagnoses, at this point, we're just in a holding pattern, helping our son be the best person he can be. Our son has had his hearing aids for as long as he can remember, and we are fortunate that his hearing seems to have improved over the years, rather than getting worse, as shown by the audiograms. (He's always been very cooperative with audiograms, even as a toddler, too.) He actually considers the hearing aids to be part of him--they are the first thing he puts on when he wakes up, and the last thing he takes off when he goes to bed. The ENT feels that most of the hearing could be restored by re-building the bone structure in the middle ear, but the surgery is extremely risky. Our son had to have one eardrum replaced last year--this gave the doctor the chance to look at the bone structure, but it also gave our son a taste of what the surgery would be like. He has opted for now to stick with the hearing aids--he's not afraid of the surgery itself, but he doesn't see any reason to put himself through that again since the hearing aids work well for him. Even if he does go through with the surgery, there's no guarantee that it will restore his hearing to the point of not needing hearing aids, anyway. Your daughter may feel better about her hearing aids if you give her a certain amount of possession of them. If you don't know this already, you can get earmolds in a variety of colors--even two or three colors swirled together--and many brands of hearing aids have colored covers. Letting her choose colors and other ways to flaunt the fact that she wears aids may help her learn to accept them better--especially if she gets to choose new earmold colors each time she needs new ones. Kiminy --------------------------------- Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Hi Lynn, I usually " lurk " but felt compelled to answer. My son is soon to be 14, has unilateral hearing loss that no one can tell us why it happened and can't be helped by hearing aids. He is also ADHD - which came first, his being unable to hear or... The one thing I realized in the past few years is that there is no such thing as a " normal " kid. Each human being is unique with their own sets of strengths and " weaknesses " . I don't know many parents that DON'T wake up in the middle of the night with questions about their kids. What you are going through, believe it or not, IS normal. You aren't alone. As for your daughter, I'm not sure what advice to give there as I don't know her personality but I find kids are a lot more resilient and intelligent than we give them credit for. This group is a wonderful resource and source of fellowship. I hope you find some peace. Nell > > Hello. My name is Lynn. I have a 5 year old that was diagnosed > last year w/moderate, bilateral SNHL. She has adjusted well and > uses hearing aids w/the FM at school. Her speech is great. We saw > an ENT at diagnosis and he ran a bunch of tests. No one can tell us > if she was born w/a hearing loss or if it just happened. No one can > tell us if it progressively gets worse or will remain stable > (although it has remained stable since diagnosis). The ENT and > Opthamologist recommend to check her annually for some " syndromes " > that may present in the second decade of life. My kid is doing > great, but I don't understand why they can't tell us more > information or what to expect for her. I'm ok during the day and > overjoyed that she is doing so great, but every so often when I > can't fall asleep at night, I ponder these questions. I feel > frustrated. I know it's kind of pointless to worry/wonder about the > past and things are going so well that I should focus on that, but > has anyone had similar frustrations with not be able to get answers > and wondering what it all means? Also, do you ever wish that when > you were at the park or the mall that your kid could me just one kid > with hearing aids? We saw a PBS show this morning and my kid was so > excited because there was a little girl on there w/hearing aids. My > daughter also says, " Next year when I'm six, I won't need these > hearing aids anymore. " I think she thinks her hearing will improve > as she grows. How do you talk to your kids if your not sure what's > going on yourself? Any suggestions welcome. Lynn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Hi Lynn - I think those of us who are hearing parents who have kids with hearing loss ask " why " and " what caused it " at the very beginning - you just want to know... We're lucky in that while the gene hasn't been mapped that causes our boys' hearing loss, we do know it's an x-linked recessive hearing loss - so while I can hear I carry the gene that caused their hearing loss. I felt terribly guilty at first - I remember driving home with then-diagnosed Sam thinking " I did this to you " and feeling just awful about it. That being said, I do think there are many kids with hearing loss that the parents don't know the cause. Have you guys been tested by a geneticist? The first thing most test for is something called Connexin which is responsible for many types of hereditary hearing loss that's non-syndromic (without other " symptoms " and not related to other syndromes). I think I saw somewhere that Connexin is responsible for about 50% of all such hearing loss... Both my boys have hearing loss - my older son was diagnosed at 3-1/2 years and like your daughter, was initially diagnosed with moderate/severe, bilateral SNHL with no clue if it was present from birth or not. My younger son, then, was diagnosed at 15 months because of his brother and showed a profound loss. Both boys were in daycare/preschool at a retirement community that had onsite childcare for its employees. One day when Tom was about 5, he made the statement " when I get big, I won't wear hearing aids " . I almost wrecked the car! Then I realized why he thought that. He had his three cohorts in his mind - old people, big people, and kids. He'd see old people with hearing aids because of his daycare and of course, he and his brother wore them but Mom, Dad, their friends, etc. did not. Tom and I talked about it and I was honest with him - that he likely would wear hearing aids when he gets big and that his hearing won't get better (oh my, it was hard to tell him that!). And then I promptly searched for a deaf big brother or big sister for both boys - it took a bit to find them since we're in a small community but I realized they needed to see cool deaf " big people " . Both Rob and were medical students and were and are wonderful. It was just the perfect thing for them. We were and are so lucky that they are part of our lives... I think - at least for my kids - that giving them the information they're asking for in words they can understand helped a bunch. And I was honest with them if I didn't know, I would tell them. It's interesting, Tom's hearing after being stable for a long time, did worsen. I've found out since that adolescence can be a time for that to happen. Both boys now have cochlear implants and are doing very well with them. They're 14 and 11 (Sam's 12 on Thursday!) now. Barbara in chilly NH Lynn wrote: > Hello. My name is Lynn. I have a 5 year old that was diagnosed > last year w/moderate, bilateral SNHL. She has adjusted well and > uses hearing aids w/the FM at school. Her speech is great. We saw > an ENT at diagnosis and he ran a bunch of tests. No one can tell us > if she was born w/a hearing loss or if it just happened. No one can > tell us if it progressively gets worse or will remain stable > (although it has remained stable since diagnosis). The ENT and > Opthamologist recommend to check her annually for some " syndromes " > that may present in the second decade of life. My kid is doing > great, but I don't understand why they can't tell us more > information or what to expect for her. I'm ok during the day and > overjoyed that she is doing so great, but every so often when I > can't fall asleep at night, I ponder these questions. I feel > frustrated. I know it's kind of pointless to worry/wonder about the > past and things are going so well that I should focus on that, but > has anyone had similar frustrations with not be able to get answers > and wondering what it all means? Also, do you ever wish that when > you were at the park or the mall that your kid could me just one kid > with hearing aids? We saw a PBS show this morning and my kid was so > excited because there was a little girl on there w/hearing aids. My > daughter also says, " Next year when I'm six, I won't need these > hearing aids anymore. " I think she thinks her hearing will improve > as she grows. How do you talk to your kids if your not sure what's > going on yourself? Any suggestions welcome. Lynn > > > > > > 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 October 2, 2006 Report Share Posted October 2, 2006 Hi Lynn, My daughter just turned 8 a few weeks ago and is in 2nd grade. She was diagnosis at birth and has a moderate to severed hearing loss. She was not aided until she was 7 months old, due to conflicting hearing test. She has other issues besides hearing loss and is referred to the doctors as the complicated kid. She has been through genetics four times with different hospitals and no one can put a name on it. She is fully mainstreamed in the local school and is doing great. I use to ask myself the same questions over and over again and lost many nights sleep over not knowing what tomorrow will bring or why. I got myself to the point that I don't worry about it anymore. I felt with each doctor, it was another rollercoaster ride of emotions and more question left unsaid. I slowly brought myself to realize that it wasn't helping me, constantly worrying about le's situation when I was doing all I could do. I don't think about it that much anymore, but from time to time I do. She is doing remarkably well, better than anyone ever expected. As far as being at the park or the mall wishing your child was just a child with hearing aids. I can totally sympathize with you on this one. My heart breaks with each person she tries to befriend and they don't have time for her. She really struggles socially but tries very hard and at times gets very frustrated and discouraged. After school everyone wants to come over for a play date; but at the same time they won't play with her at school or when out at recess. It seems like when their friends are around she doesn't exist. She has two very close friends on the street that she plays with all the time and they always included her when they are around. She wants to be a social butterfly but her feelings get so hurt when she is turned away at school. She always says why doesn't anyone want to play with me at school, but they want to come over my house to play. She has never been teased about her hearing aids but many kids ask about them. When I sit at the park or the school I ask myself why she can't just fit in. It's heartbreaking to watch, especially with how hard she tries. Regarding the statement " When I am six I won't need hearing aids again more " . It's funny how these kids perceive things. For Kindergarten le went to school out of district because at the time, we felt it was in our best interest send to a school that knew about hearing loss without knowing how she would do. For first grade we decided that we were going to fully mainstream her into our district, which is something she wanted more than anything in the world. So we decided we would give it a shot, she is the only hearing impaired child in her school. Several days before school she said so to me. Mommy now that I am going to 's school I won't have to wear my hearing aids any more, right. I was shocked and just wanted to cry. She thought because she was going to the same school her brother went to and no one wears hearing aids there, she won't have too either. I asked her is that why you really wanted to go there, and she said yes and because my friends are there. So we talked about it for a long time. She loves her aids and knows that they help her; she just tries so hard to be just like everyone else and just wants to fit in like everyone else. The older she get the easier it gets, I had many sleepless nights worrying it does get easier. I knew thought it would but it does. Hang in there and keep doing what your doing. Take Care, Colleen Mom to le 8 = moderate to severe hearing loss, etc. etc. etc. Mom to 12 = hearing, allergies Why? Hello. My name is Lynn. I have a 5 year old that was diagnosed last year w/moderate, bilateral SNHL. She has adjusted well and uses hearing aids w/the FM at school. Her speech is great. We saw an ENT at diagnosis and he ran a bunch of tests. No one can tell us if she was born w/a hearing loss or if it just happened. No one can tell us if it progressively gets worse or will remain stable (although it has remained stable since diagnosis). The ENT and Opthamologist recommend to check her annually for some " syndromes " that may present in the second decade of life. My kid is doing great, but I don't understand why they can't tell us more information or what to expect for her. I'm ok during the day and overjoyed that she is doing so great, but every so often when I can't fall asleep at night, I ponder these questions. I feel frustrated. I know it's kind of pointless to worry/wonder about the past and things are going so well that I should focus on that, but has anyone had similar frustrations with not be able to get answers and wondering what it all means? Also, do you ever wish that when you were at the park or the mall that your kid could me just one kid with hearing aids? We saw a PBS show this morning and my kid was so excited because there was a little girl on there w/hearing aids. My daughter also says, " Next year when I'm six, I won't need these hearing aids anymore. " I think she thinks her hearing will improve as she grows. How do you talk to your kids if your not sure what's going on yourself? Any suggestions welcome. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 I have to tell you that I completely understand how you feel. Our son (he will be 13 in Jan.) lost his hearing suddenly (we think) when he was almost 5. Now that I look back, I sometimes wonder if maybe he had a mild hearing loss and we never knew it. I have to tell you that after it happened (I was just barely pg with my second child) I went into such a depression and was just borderline in denial of it all. My husband was in complete denial. When we were told that he would never hear again we were beyond devastated. I think we actually spent the next 3 years in a blurr. When we were contemplating the Cochlear Implant (and we did for almost 2 years), I remember waking up screaming and crying and could not stop. I think that night was the last night I asked " WHY " . I sometimes think about how different he would be if he could still hear normally and wonder all the time if I am making the right decisions for him or if I am too over protective of him ( I know I am), but I honestly don`t think I would change any decision that I have made because I have made them all to better his life. I know I am rambling. These are things I have never said to anyone before! I just want you to know that you are NOT alone at all. I sometimes wish that they could give me a definite answer to why he lost his hearing but I really don`t think they will ever know for sure. They think it was the high fever and they think it was the ear infection. But the key is- They THINK- .. It is quite frustrating to NOT know the reason, but until science figures out EVERYTHING, I think there will be many more of us that are outside the realms quietly wondering if we will ever know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 I think we stopped looking for the " why " answers years ago. I'm sure exactly when, but at some point it just stopped being as important. Perhaps it's because we have several different answers and none of them really work as an explanation. One of our answers pins the cause on the syndrome (Goldenhar) but that just doesn't work. Another mentions the ITP I had while pregnant, but that doesn't really explain anything, it's just a coincidence that gets brought up periodically -- it was far worse in my second pregnancy and she's fine. It might be otoschlerosis, a slowly developing condition that, in Ian's case, affects the middle ear. (the most likely answer) Or it might be something else. We went through all kinds of tests and scans and whatnot to rule out a bunch of syndromes. Not to answer the " why " but to address his needs if the syndromes were truly there. At first the " why " was all tied into finding out if his progressive loss could be stopped. But after a while the why became second to the " hows " of how are we were going to deal with all this. How are we going to help him adjust? How do you help a kid accept that it simply is going to happen however it happens? How are we going to get the school to provide the support and services he needed? The why part just faded into the background, replaced by " how " and now even that seems to be minor. After all these years, we're just taking it as it comes and accepting that we'll probably never know the real answer for the why question. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Lynn, I think you are in the right place to find the support that you need. Many of us have the same stories with different variations. I have a 5 yr old boy with a Severe BSNHL. He is deaf. He also has other complications like PDD-NOS, sleep disorder, asthma, etc. He was born on time with no drugs during the birth. I was very sick with Pneumonia and Dehydration through out the pregnancy. The Pneumonia was in my 6Th month and probably caused the Deafness but the other problems we will never know. My suggestions for you is to do as much research on the Internet as possible, take classes if possible at the local community college, try to meet other Deaf adults, and time. I am lucky that I live in a big city with an Interpreter training program and take classes there. We also go to many deaf events, ASL story time, etc. I had the privilege of going to a Deaf Panel one night were there were 8 Deaf and Hard of Hearing Adults that sat and talked about there experiences, growing up, trials and successes. To be able to see these adults successful after everything that their challenges had created, sent me down the road of acceptance. I realized one day. I don't know why. That for whatever reason my son was born the way he was born for a reason. I may not know what that is for now or a longtime but, he is beautiful, happy and growing everyday. If he was not born this way he would not become or be who is! I love him and that is all that matters. No label or Dr is ever going to change or fix him. Just make the decisions that need to be made with your heart. One thing that I have learned over the past 5 years is that the Deaf Community is one of the most beautiful group of people that I have ever met. I feel privileged to be a part of their community even if it is as a parent of a Deaf or HH child. If the opportunity arises take the chance to meet some Deaf or HH hearing adults. It is a wonderful experience and it helps see that there is a very bright future for our children no matter what their loss or disabilities are. --- Lynn lresn@...> wrote: > Hello. My name is Lynn. I have a 5 year old that was diagnosed > last year w/moderate, bilateral SNHL. She has adjusted well and > uses hearing aids w/the FM at school. Her speech is great. We saw > an ENT at diagnosis and he ran a bunch of tests. No one can tell us > if she was born w/a hearing loss or if it just happened. No one can > tell us if it progressively gets worse or will remain stable > (although it has remained stable since diagnosis). The ENT and > Opthamologist recommend to check her annually for some " syndromes " > that may present in the second decade of life. My kid is doing > great, but I don't understand why they can't tell us more > information or what to expect for her. I'm ok during the day and > overjoyed that she is doing so great, but every so often when I > can't fall asleep at night, I ponder these questions. I feel > frustrated. I know it's kind of pointless to worry/wonder about the > past and things are going so well that I should focus on that, but > has anyone had similar frustrations with not be able to get answers > and wondering what it all means? Also, do you ever wish that when > you were at the park or the mall that your kid could me just one kid > with hearing aids? We saw a PBS show this morning and my kid was so > excited because there was a little girl on there w/hearing aids. My > daughter also says, " Next year when I'm six, I won't need these > hearing aids anymore. " I think she thinks her hearing will improve > as she grows. How do you talk to your kids if your not sure what's > going on yourself? Any suggestions welcome. Lynn > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Hi Lynn, I'm trying to catch up on my email - sorry for chiming in late. I'm , and I have a 9-year-old daughter, Hannah, who has mild-moderate mixed hearing loss. She's in third grade and doing very well. I did not spend a lot of time trying to figure out why she has hearing loss, though it seems likely to be associated with premature birth (8 weeks early) and/or the medications required to treat her in the NICU. She had genetic tests because she also has unusual thumbs, but nothing conclusive was found. Her hearing has remained basically stable since diagnosis, but I keep my fingers crossed. I think the passage of time, and the fact that she's doing well in school, have helped me to accept this as just another part of who she is. We have met a few people with hearing aids, including kids, and in earlier years especially Hannah was really happy about this. Once we were having pizza and a mom came in with two girls who had more severe hearing loss. One of them spotted Hannah's hearing aids and was so excited she asked her mother if she could come over and talk to us. Of course we said OK. So I think it will happen, and your daughter will see that she's not alone in having hearing aids, even if (like Hannah) she's the only one in her school. She's asked the question about whether her hearing will get better and she won't need the aids any more, and yes, it's really hard to have to answer that. Since the loss has been stable I just tell her what I know, that we hope her hearing continues to stay the same but we don't know for sure, but it probably won't get better. She accepts the hearing aids but still once in a while expresses frustration that she needs them - again, I wish I could tell her something different but I can't. Now most of the time I just worry about normal things, like whether she is making friends or when she'll be more patient with her piano practice. - Why? Hello. My name is Lynn. I have a 5 year old that was diagnosed last year w/moderate, bilateral SNHL. She has adjusted well and uses hearing aids w/the FM at school. Her speech is great. We saw an ENT at diagnosis and he ran a bunch of tests. No one can tell us if she was born w/a hearing loss or if it just happened. No one can tell us if it progressively gets worse or will remain stable (although it has remained stable since diagnosis). The ENT and Opthamologist recommend to check her annually for some " syndromes " that may present in the second decade of life. My kid is doing great, but I don't understand why they can't tell us more information or what to expect for her. I'm ok during the day and overjoyed that she is doing so great, but every so often when I can't fall asleep at night, I ponder these questions. I feel frustrated. I know it's kind of pointless to worry/wonder about the past and things are going so well that I should focus on that, but has anyone had similar frustrations with not be able to get answers and wondering what it all means? Also, do you ever wish that when you were at the park or the mall that your kid could me just one kid with hearing aids? We saw a PBS show this morning and my kid was so excited because there was a little girl on there w/hearing aids. My daughter also says, " Next year when I'm six, I won't need these hearing aids anymore. " I think she thinks her hearing will improve as she grows. How do you talk to your kids if your not sure what's going on yourself? Any suggestions welcome. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 - May I ask you how long has your daughter worn her hearing aids? Does she receive speech therapy? Wear an FM system? I am a mom of a 2 year old and he has a mild/mod. loss as well. He has been wearing his hearing aids since he was 3 months old. We were fortunate he was picked up by the Newborn Screening at the hospital. He is doing so great and speaking so well, that for preschool he will likely not qualify for any services. I am elated, but I am also nervous since I want his great progress to continue. Any advice word be great! --- Pyle eric_pyle@...> wrote: > Hi Lynn, > I'm trying to catch up on my email - sorry for > chiming in late. I'm , and I have a 9-year-old > daughter, Hannah, who has mild-moderate mixed > hearing loss. She's in third grade and doing very > well. I did not spend a lot of time trying to figure > out why she has hearing loss, though it seems likely > to be associated with premature birth (8 weeks > early) and/or the medications required to treat her > in the NICU. She had genetic tests because she also > has unusual thumbs, but nothing conclusive was > found. Her hearing has remained basically stable > since diagnosis, but I keep my fingers crossed. I > think the passage of time, and the fact that she's > doing well in school, have helped me to accept this > as just another part of who she is. > > We have met a few people with hearing aids, > including kids, and in earlier years especially > Hannah was really happy about this. Once we were > having pizza and a mom came in with two girls who > had more severe hearing loss. One of them spotted > Hannah's hearing aids and was so excited she asked > her mother if she could come over and talk to us. Of > course we said OK. So I think it will happen, and > your daughter will see that she's not alone in > having hearing aids, even if (like Hannah) she's the > only one in her school. > > She's asked the question about whether her hearing > will get better and she won't need the aids any > more, and yes, it's really hard to have to answer > that. Since the loss has been stable I just tell her > what I know, that we hope her hearing continues to > stay the same but we don't know for sure, but it > probably won't get better. She accepts the hearing > aids but still once in a while expresses frustration > that she needs them - again, I wish I could tell her > something different but I can't. Now most of the > time I just worry about normal things, like whether > she is making friends or when she'll be more patient > with her piano practice. > > - > > Why? > > Hello. My name is Lynn. I have a 5 year old that was > diagnosed > last year w/moderate, bilateral SNHL. She has > adjusted well and > uses hearing aids w/the FM at school. Her speech is > great. We saw > an ENT at diagnosis and he ran a bunch of tests. No > one can tell us > if she was born w/a hearing loss or if it just > happened. No one can > tell us if it progressively gets worse or will > remain stable > (although it has remained stable since diagnosis). > The ENT and > Opthamologist recommend to check her annually for > some " syndromes " > that may present in the second decade of life. My > kid is doing > great, but I don't understand why they can't tell us > more > information or what to expect for her. I'm ok during > the day and > overjoyed that she is doing so great, but every so > often when I > can't fall asleep at night, I ponder these > questions. I feel > frustrated. I know it's kind of pointless to > worry/wonder about the > past and things are going so well that I should > focus on that, but > has anyone had similar frustrations with not be able > to get answers > and wondering what it all means? Also, do you ever > wish that when > you were at the park or the mall that your kid could > me just one kid > with hearing aids? We saw a PBS show this morning > and my kid was so > excited because there was a little girl on there > w/hearing aids. My > daughter also says, " Next year when I'm six, I won't > need these > hearing aids anymore. " I think she thinks her > hearing will improve > as she grows. How do you talk to your kids if your > not sure what's > going on yourself? Any suggestions welcome. Lynn > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 - Thanks for your response. It sounds like we have similar situations. I appreciated hearing about your situation. phine - My daughter is also mild - mod. She's only been wearing her HA for a year, but her speech is also great. Even though her speech is great (better than most normal hearing kids her age), because of her hearing loss, we were able to get her evaluated for speech through her school district. She currently is on a " consult " only basis w/the speech therapist at her school sight (but she's in the system) so, if, in the future, she needs help it will be easier for her to get it. Also, the intitial evaluation triggered an IEP in the district, and in the IEP the school district and our audiologist recommend the FM system. The school district paid for her FM and boots for her hearing aids. It sounds as if some people are having to pay for their FM's on their own - everything was provided for us. All of the above info. applies to kindergarten in our public school, but there were no services available for her for preschool. For what it's worth... phine Lee josephinedlee@...> wrote: - May I ask you how long has your daughter worn her hearing aids? Does she receive speech therapy? Wear an FM system? I am a mom of a 2 year old and he has a mild/mod. loss as well. He has been wearing his hearing aids since he was 3 months old. We were fortunate he was picked up by the Newborn Screening at the hospital. He is doing so great and speaking so well, that for preschool he will likely not qualify for any services. I am elated, but I am also nervous since I want his great progress to continue. Any advice word be great! --- Pyle eric_pyle@...> wrote: > Hi Lynn, > I'm trying to catch up on my email - sorry for > chiming in late. I'm , and I have a 9-year-old > daughter, Hannah, who has mild-moderate mixed > hearing loss. She's in third grade and doing very > well. I did not spend a lot of time trying to figure > out why she has hearing loss, though it seems likely > to be associated with premature birth (8 weeks > early) and/or the medications required to treat her > in the NICU. She had genetic tests because she also > has unusual thumbs, but nothing conclusive was > found. Her hearing has remained basically stable > since diagnosis, but I keep my fingers crossed. I > think the passage of time, and the fact that she's > doing well in school, have helped me to accept this > as just another part of who she is. > > We have met a few people with hearing aids, > including kids, and in earlier years especially > Hannah was really happy about this. Once we were > having pizza and a mom came in with two girls who > had more severe hearing loss. One of them spotted > Hannah's hearing aids and was so excited she asked > her mother if she could come over and talk to us. Of > course we said OK. So I think it will happen, and > your daughter will see that she's not alone in > having hearing aids, even if (like Hannah) she's the > only one in her school. > > She's asked the question about whether her hearing > will get better and she won't need the aids any > more, and yes, it's really hard to have to answer > that. Since the loss has been stable I just tell her > what I know, that we hope her hearing continues to > stay the same but we don't know for sure, but it > probably won't get better. She accepts the hearing > aids but still once in a while expresses frustration > that she needs them - again, I wish I could tell her > something different but I can't. Now most of the > time I just worry about normal things, like whether > she is making friends or when she'll be more patient > with her piano practice. > > - > > Why? > > Hello. My name is Lynn. I have a 5 year old that was > diagnosed > last year w/moderate, bilateral SNHL. She has > adjusted well and > uses hearing aids w/the FM at school. Her speech is > great. We saw > an ENT at diagnosis and he ran a bunch of tests. No > one can tell us > if she was born w/a hearing loss or if it just > happened. No one can > tell us if it progressively gets worse or will > remain stable > (although it has remained stable since diagnosis). > The ENT and > Opthamologist recommend to check her annually for > some " syndromes " > that may present in the second decade of life. My > kid is doing > great, but I don't understand why they can't tell us > more > information or what to expect for her. I'm ok during > the day and > overjoyed that she is doing so great, but every so > often when I > can't fall asleep at night, I ponder these > questions. I feel > frustrated. I know it's kind of pointless to > worry/wonder about the > past and things are going so well that I should > focus on that, but > has anyone had similar frustrations with not be able > to get answers > and wondering what it all means? Also, do you ever > wish that when > you were at the park or the mall that your kid could > me just one kid > with hearing aids? We saw a PBS show this morning > and my kid was so > excited because there was a little girl on there > w/hearing aids. My > daughter also says, " Next year when I'm six, I won't > need these > hearing aids anymore. " I think she thinks her > hearing will improve > as she grows. How do you talk to your kids if your > not sure what's > going on yourself? Any suggestions welcome. Lynn > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Lynn -- Thank you! I also wanted to mention that it is completely normal to still wonder why your child has a loss. My son had a " work up " which meant he went through tons of test after birth for about a year and a half (cat scans, eye tests, add'l hearing tests, etc.) to see if it was a syndrome too. It was not. Nor did his blood work show any chromosomes linked to hearing loss (well...at least not one that is known about yet). So I don't know if we, or you, will ever know what caused it. I believe the stat is 50% of cases are of unknown causes. I look back to what I ate, drank, etc. during pregnancy and think DID I DO SOMETHING WRONG? Fact is I did not. We have to move on and accept this. This is not easy, and I totally understand. But just know that everything will be ok. Tell your child that some kids wear glasses for their eyes, and that she wears hearing aids for her ears. Just speak very matter of factly . . . again, my child is young and you can probably share more with me than I can with you. But just know you are not alone. Good luck with all the testing. I would be very optimistic about the stable hearing tests. That is great news and will likely continue, according to my audiologist. Other tips.... maybe you can contact a school in your area that is a school for the deaf? They may have a play group or outing where she can meet other kids with hearing aids, too. I don't know what state you live in. But that could be worth checking out. And, ask your audiologist for some names of parents that are in your situation. Maybe you can meet up for a play-date. --- Lynn Resnick lresn@...> wrote: > - Thanks for your response. It sounds like we > have similar situations. I appreciated hearing > about your situation. > > phine - My daughter is also mild - mod. She's > only been wearing her HA for a year, but her speech > is also great. Even though her speech is great > (better than most normal hearing kids her age), > because of her hearing loss, we were able to get her > evaluated for speech through her school district. > She currently is on a " consult " only basis w/the > speech therapist at her school sight (but she's in > the system) so, if, in the future, she needs help it > will be easier for her to get it. Also, the > intitial evaluation triggered an IEP in the > district, and in the IEP the school district and our > audiologist recommend the FM system. The school > district paid for her FM and boots for her hearing > aids. It sounds as if some people are having to pay > for their FM's on their own - everything was > provided for us. All of the above info. applies to > kindergarten in our public school, but there were no > services available for her for preschool. > For what it's worth... > > phine Lee josephinedlee@...> wrote: > - May I ask you how long has your > daughter worn > her hearing aids? Does she receive speech therapy? > Wear an FM system? I am a mom of a 2 year old and he > has a mild/mod. loss as well. He has been wearing > his > hearing aids since he was 3 months old. We were > fortunate he was picked up by the Newborn Screening > at > the hospital. He is doing so great and speaking so > well, that for preschool he will likely not qualify > for any services. I am elated, but I am also nervous > since I want his great progress to continue. Any > advice word be great! > > --- Pyle eric_pyle@...> wrote: > > > Hi Lynn, > > I'm trying to catch up on my email - sorry for > > chiming in late. I'm , and I have a 9-year-old > > daughter, Hannah, who has mild-moderate mixed > > hearing loss. She's in third grade and doing very > > well. I did not spend a lot of time trying to > figure > > out why she has hearing loss, though it seems > likely > > to be associated with premature birth (8 weeks > > early) and/or the medications required to treat > her > > in the NICU. She had genetic tests because she > also > > has unusual thumbs, but nothing conclusive was > > found. Her hearing has remained basically stable > > since diagnosis, but I keep my fingers crossed. I > > think the passage of time, and the fact that she's > > doing well in school, have helped me to accept > this > > as just another part of who she is. > > > > We have met a few people with hearing aids, > > including kids, and in earlier years especially > > Hannah was really happy about this. Once we were > > having pizza and a mom came in with two girls who > > had more severe hearing loss. One of them spotted > > Hannah's hearing aids and was so excited she asked > > her mother if she could come over and talk to us. > Of > > course we said OK. So I think it will happen, and > > your daughter will see that she's not alone in > > having hearing aids, even if (like Hannah) she's > the > > only one in her school. > > > > She's asked the question about whether her hearing > > will get better and she won't need the aids any > > more, and yes, it's really hard to have to answer > > that. Since the loss has been stable I just tell > her > > what I know, that we hope her hearing continues to > > stay the same but we don't know for sure, but it > > probably won't get better. She accepts the hearing > > aids but still once in a while expresses > frustration > > that she needs them - again, I wish I could tell > her > > something different but I can't. Now most of the > > time I just worry about normal things, like > whether > > she is making friends or when she'll be more > patient > > with her piano practice. > > > > - > > > > Why? > > > > Hello. My name is Lynn. I have a 5 year old that > was > > diagnosed > > last year w/moderate, bilateral SNHL. She has > > adjusted well and > > uses hearing aids w/the FM at school. Her speech > is > > great. We saw > > an ENT at diagnosis and he ran a bunch of tests. > No > > one can tell us > > if she was born w/a hearing loss or if it just > > happened. No one can > > tell us if it progressively gets worse or will > > remain stable > > (although it has remained stable since diagnosis). > > The ENT and > > Opthamologist recommend to check her annually for > > some " syndromes " > > that may present in the second decade of life. My > > kid is doing > > great, but I don't understand why they can't tell > us > > more > > information or what to expect for her. I'm ok > during > > the day and > > overjoyed that she is doing so great, but every so > > often when I > > can't fall asleep at night, I ponder these > > questions. I feel > > frustrated. I know it's kind of pointless to > > worry/wonder about the > > past and things are going so well that I should > > focus on that, but > > has anyone had similar frustrations with not be > able > > to get answers > > and wondering what it all means? Also, do you ever > > wish that when > > you were at the park or the mall that your kid > could > > me just one kid > > with hearing aids? We saw a PBS show this morning > > and my kid was so > > excited because there was a little girl on there > > w/hearing aids. My > > daughter also says, " Next year when I'm six, I > won't > > need these > > hearing aids anymore. " I think she thinks her > > hearing will improve > > as she grows. How do you talk to your kids if your > > not sure what's > > going on yourself? Any suggestions welcome. Lynn > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Thanks phine. I live in Southern California. I just found out about a once a month story time w/sign language at a small bookstore in town. We are going to give it a try and see what happens... It sounds like my daughter had all of the same tests that your son had. I'm looking to the future now and have put the " why " on the back burner. Thanks for your encouragement. Lynn phine Lee josephinedlee@...> wrote: Lynn -- Thank you! I also wanted to mention that it is completely normal to still wonder why your child has a loss. My son had a " work up " which meant he went through tons of test after birth for about a year and a half (cat scans, eye tests, add'l hearing tests, etc.) to see if it was a syndrome too. It was not. Nor did his blood work show any chromosomes linked to hearing loss (well...at least not one that is known about yet). So I don't know if we, or you, will ever know what caused it. I believe the stat is 50% of cases are of unknown causes. I look back to what I ate, drank, etc. during pregnancy and think DID I DO SOMETHING WRONG? Fact is I did not. We have to move on and accept this. This is not easy, and I totally understand. But just know that everything will be ok. Tell your child that some kids wear glasses for their eyes, and that she wears hearing aids for her ears. Just speak very matter of factly . . . again, my child is young and you can probably share more with me than I can with you. But just know you are not alone. Good luck with all the testing. I would be very optimistic about the stable hearing tests. That is great news and will likely continue, according to my audiologist. Other tips.... maybe you can contact a school in your area that is a school for the deaf? They may have a play group or outing where she can meet other kids with hearing aids, too. I don't know what state you live in. But that could be worth checking out. And, ask your audiologist for some names of parents that are in your situation. Maybe you can meet up for a play-date. --- Lynn Resnick lresn@...> wrote: > - Thanks for your response. It sounds like we > have similar situations. I appreciated hearing > about your situation. > > phine - My daughter is also mild - mod. She's > only been wearing her HA for a year, but her speech > is also great. Even though her speech is great > (better than most normal hearing kids her age), > because of her hearing loss, we were able to get her > evaluated for speech through her school district. > She currently is on a " consult " only basis w/the > speech therapist at her school sight (but she's in > the system) so, if, in the future, she needs help it > will be easier for her to get it. Also, the > intitial evaluation triggered an IEP in the > district, and in the IEP the school district and our > audiologist recommend the FM system. The school > district paid for her FM and boots for her hearing > aids. It sounds as if some people are having to pay > for their FM's on their own - everything was > provided for us. All of the above info. applies to > kindergarten in our public school, but there were no > services available for her for preschool. > For what it's worth... > > phine Lee josephinedlee@...> wrote: > - May I ask you how long has your > daughter worn > her hearing aids? Does she receive speech therapy? > Wear an FM system? I am a mom of a 2 year old and he > has a mild/mod. loss as well. He has been wearing > his > hearing aids since he was 3 months old. We were > fortunate he was picked up by the Newborn Screening > at > the hospital. He is doing so great and speaking so > well, that for preschool he will likely not qualify > for any services. I am elated, but I am also nervous > since I want his great progress to continue. Any > advice word be great! > > --- Pyle eric_pyle@...> wrote: > > > Hi Lynn, > > I'm trying to catch up on my email - sorry for > > chiming in late. I'm , and I have a 9-year-old > > daughter, Hannah, who has mild-moderate mixed > > hearing loss. She's in third grade and doing very > > well. I did not spend a lot of time trying to > figure > > out why she has hearing loss, though it seems > likely > > to be associated with premature birth (8 weeks > > early) and/or the medications required to treat > her > > in the NICU. She had genetic tests because she > also > > has unusual thumbs, but nothing conclusive was > > found. Her hearing has remained basically stable > > since diagnosis, but I keep my fingers crossed. I > > think the passage of time, and the fact that she's > > doing well in school, have helped me to accept > this > > as just another part of who she is. > > > > We have met a few people with hearing aids, > > including kids, and in earlier years especially > > Hannah was really happy about this. Once we were > > having pizza and a mom came in with two girls who > > had more severe hearing loss. One of them spotted > > Hannah's hearing aids and was so excited she asked > > her mother if she could come over and talk to us. > Of > > course we said OK. So I think it will happen, and > > your daughter will see that she's not alone in > > having hearing aids, even if (like Hannah) she's > the > > only one in her school. > > > > She's asked the question about whether her hearing > > will get better and she won't need the aids any > > more, and yes, it's really hard to have to answer > > that. Since the loss has been stable I just tell > her > > what I know, that we hope her hearing continues to > > stay the same but we don't know for sure, but it > > probably won't get better. She accepts the hearing > > aids but still once in a while expresses > frustration > > that she needs them - again, I wish I could tell > her > > something different but I can't. Now most of the > > time I just worry about normal things, like > whether > > she is making friends or when she'll be more > patient > > with her piano practice. > > > > - > > > > Why? > > > > Hello. My name is Lynn. I have a 5 year old that > was > > diagnosed > > last year w/moderate, bilateral SNHL. She has > > adjusted well and > > uses hearing aids w/the FM at school. Her speech > is > > great. We saw > > an ENT at diagnosis and he ran a bunch of tests. > No > > one can tell us > > if she was born w/a hearing loss or if it just > > happened. No one can > > tell us if it progressively gets worse or will > > remain stable > > (although it has remained stable since diagnosis). > > The ENT and > > Opthamologist recommend to check her annually for > > some " syndromes " > > that may present in the second decade of life. My > > kid is doing > > great, but I don't understand why they can't tell > us > > more > > information or what to expect for her. I'm ok > during > > the day and > > overjoyed that she is doing so great, but every so > > often when I > > can't fall asleep at night, I ponder these > > questions. I feel > > frustrated. I know it's kind of pointless to > > worry/wonder about the > > past and things are going so well that I should > > focus on that, but > > has anyone had similar frustrations with not be > able > > to get answers > > and wondering what it all means? Also, do you ever > > wish that when > > you were at the park or the mall that your kid > could > > me just one kid > > with hearing aids? We saw a PBS show this morning > > and my kid was so > > excited because there was a little girl on there > > w/hearing aids. My > > daughter also says, " Next year when I'm six, I > won't > > need these > > hearing aids anymore. " I think she thinks her > > hearing will improve > > as she grows. How do you talk to your kids if your > > not sure what's > > going on yourself? Any suggestions welcome. Lynn > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 - Thanks so much for the great input. Reading is key I find, too. And every age has their own stage! Too funny! Thanks again! --- Pyle eric_pyle@...> wrote: > phine, > > Sorry to be really late in responding to this - was > up to over 2000 unread messages in Listen-Up. I've > switched to digest format in the hopes of catching > up. > > My daughter has worn hearing aids for almost 3 years > now. Hannah has received speech therapy and had an > FM system in school ever since second grade. She > does very well in school and also speaks well, but > continues speech therapy for some " cosmetic " issues > such as " slushy s " (sounds like " th " instead of > " s " ). The speech therapist at school has not had > much luck with this, and has suggested that it will > be hard to teach Hannah to change this sound because > she does not seem to hear the difference. My feeling > is that it would be nice if they can fix this but it > is not a huge issue. > > She is currently handed under a 504 plan because she > does not have any learning disabilities. I have been > lucky that both public school districts I've dealt > with have offered the FM system and speech therapy > right off the bat. I wonder if other issues may come > up as the amount of class discussion increases and > work gets more advanced in the upper elementary > grades. So far, so good. The thing that's trickier > is social cues or overheard speech, which have been > discussed on the list before - even though she can > understand speech pretty well with her aids, I > suspect there are subtleties like tone of voice > which she does not " get " as well as a normal hearing > child. Right now she tends to use a bored or > sarcastic sounding tone a lot, sounding like she's 9 > going on 12. I just try to point it out when she > does it and ask her to speak politely. I know it's > partly the age. > > The main thing we did with Hannah at your daughter's > age was to read to her a lot. She didn't have > hearing aids yet but I would put her on my lap and > always speak clearly and close to her better ear. > Sometimes I would run my finger along the words on > the page as I read too. It probably helped that she > is an only child and got lots of attention. Also her > hearing improved significantly after she first got > ear tubes around 18 months, at which time her > vocabulary started to take off. She did get services > through the state (Vermont) early intervention > program at the time too, which included speech and > occupational therapy (for sensory issues and > " different " thumbs) as well as a special needs > preschool. We ended up changing her to a normal > preschool because she was so advanced and most of > the kids in the public preschool had more severe > disabilities we felt they were not giving her good > models for speech or behavior. > > I suspect your son will be fine, just be alert to > how he is doing and things you hear from school. > > - > > Re: Why? > > > > > > > > > > > > > > - May I ask you how long has your > daughter worn > > her hearing aids? Does she receive speech therapy? > > Wear an FM system? I am a mom of a 2 year old and > he > > has a mild/mod. loss as well. He has been wearing > his > > hearing aids since he was 3 months old. We were > > fortunate he was picked up by the Newborn Screening > at > > the hospital. He is doing so great and speaking so > > well, that for preschool he will likely not qualify > > for any services. I am elated, but I am also > nervous > > since I want his great progress to continue. Any > > advice word be great! > > > > > > > > > > > > > http://groups.yahoo.com) Quote Link to comment Share on other sites More sharing options...
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