Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 > -----Original Message----- > From: @... > My name is , and I am the parent of an 8 yo child with moderate > sloping to bilateral hearing impairment apparently present since Oops, I meant sloping to _severe_ bilateral hearing impairment--something got lost in editing! -- @... http://pineloft.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Hi , Welcome to Listen-Up. I hope you will find this list a valuable resource for you (I have!). We share similar birth stories except that my son was 3 weeks premature. But otherwise the story was the same. Same severe fetal distress, same low low apgars, same seizures (mine had apnea spells and an intraventricular hemmorhage). now has a mild-moderately severe bilateral sensorineural hearing loss and does really well with his aids. I was interested to hear that your son has some subtle language/social issues. does too and I've never been able to explain it well enough to get a satisfactory answer for why I feel that he's off, though he certainly has been tested enough! I usually decide I'm being paranoid because of his birth circumstances-- I keep waiting for the other shoe to drop (as I'm sure it was with you, they really wouldn't predict my son's intellectual potential). But he definitely has " holes " in the way he processes information and sometimes interacts with others-- weird absences of brain power or something. We are also considering sign for times when he's out of range or isn't wearing aids. I've often wished to meet a family who had a child like but older, so I could get a sense of what's down the road for us. Perhaps I can learn from your experiences! Welcome again. -Daphne Potter mom to 4 1/2 (mild-moderately severe), Leo 2 3/4 (normally hearing) > New Member Intro > > > Hi: > > My name is , and I am the parent of an 8 yo child with moderate > sloping to bilateral hearing impairment apparently present since > birth. He > was born three weeks post mature with severe fetal distress and > apgars of 1 > and 3. He was dehydrated and had low body fat. He was atonal with no > reflexes and no breathing. His one apgar point was because he > his hear was > working, although it was in fibrillation. His umbilical cord was badly > decayed and was wrapped around his neck several times. He was covered in, > and had inhaled meconium. He had an 8 minute general seizure when he was > almost 24 hours old. They say his etiology is likely heredity <;-\. > > His hearing impairment was diagnosed at about age one during routine > follow-ups as a 'NICU Baby'. He has worn two hearing aids consistently > since then and is now on his second pair (Digifocus II). He basically > considers them to be parts of his body. He has no known > cognitive or motor > impairments and is a whiz at reading (though has some comprehension > problems), and not too shabby at math. > > He attends a regular grade 3 classroom with the assistance of an FM system > and with 3 to 6 hours per week of support from the school > district and from > an APSEA itinerant teacher. He is not currently considered > language delayed > although he does have some minor problems regarding certain subtleties of > language including some obscure tenses and humour. He has had a > few social > difficulties. > > He uses oral speech but we do encourage him to learn and use sign language > as a back up and as a way to signal him from a distance when he > cannot hear. > Mostly, to remind him to say, 'Please' and 'Thank you' at family > parties so > far. > > My husband and I also have a six year old son who has no > impairments of any > sort. We live in rural New Brunswick and my husband and I both have > undergraduate degrees (but I'm currently either a sahm or > underemployed--depending on how you look at it.) > > -- > Floyd > @... http://pineloft.com > > > 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 January 12, 2001 Report Share Posted January 12, 2001 Hi , Welcome to the list. My daughter is 8 yo and bilateral, mod-severe hi-freq impairment. The folks on this list have been a wonderful source of information and, more importantly, moral support!! If I offend with this question, I really don't mean to...but my curiousity gets the best of me... How does one go 3 weeks post mature? Docs miscalculate the due date? My curiousity is because my son was born 2 weeks post-mature -- Doctors insisted the due date was 3 weeks later than I thought. Even told me I was " mistaking gas for fetal movement " at what they thought was 12-13 weeks along. This was my 3rd child so I think I knew the difference between fetal movement and gas!! They would have let me carry the child for another 2 weeks if mother nature hadn't intervened. As it was, his " official " gestation was 42 weeks. - Pam > > Hi: > > > > My name is , and I am the parent of an 8 yo child with moderate > > sloping to bilateral hearing impairment apparently present since > > birth. He > > was born three weeks post mature with severe fetal distress and > > apgars of 1 > > and 3. He was dehydrated and had low body fat. He was atonal with no > > reflexes and no breathing. His one apgar point was because he > > his hear was > > working, although it was in fibrillation. His umbilical cord was badly > > decayed and was wrapped around his neck several times. He was covered in, > > and had inhaled meconium. He had an 8 minute general seizure when he was > > almost 24 hours old. They say his etiology is likely heredity <;-\. > > > > His hearing impairment was diagnosed at about age one during routine > > follow-ups as a 'NICU Baby'. He has worn two hearing aids consistently > > since then and is now on his second pair (Digifocus II). He basically > > considers them to be parts of his body. He has no known > > cognitive or motor > > impairments and is a whiz at reading (though has some comprehension > > problems), and not too shabby at math. > > > > He attends a regular grade 3 classroom with the assistance of an FM system > > and with 3 to 6 hours per week of support from the school > > district and from > > an APSEA itinerant teacher. He is not currently considered > > language delayed > > although he does have some minor problems regarding certain subtleties of > > language including some obscure tenses and humour. He has had a > > few social > > difficulties. > > > > He uses oral speech but we do encourage him to learn and use sign language > > as a back up and as a way to signal him from a distance when he > > cannot hear. > > Mostly, to remind him to say, 'Please' and 'Thank you' at family > > parties so > > far. > > > > My husband and I also have a six year old son who has no > > impairments of any > > sort. We live in rural New Brunswick and my husband and I both have > > undergraduate degrees (but I'm currently either a sahm or > > underemployed--depending on how you look at it.) > > > > -- > > Floyd > > @... http://pineloft.com > > > > > > 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. > > > > > 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 January 12, 2001 Report Share Posted January 12, 2001 > -----Original Message----- > From: Pam Duin > > Hi , > Welcome to the list. Thank you. From the descriptions I've been reading so far, it seems that this is the place for me! So many people here seem to be in similar situations. > If I offend with this question, I really don't mean to...but my curiousity > gets the best of me... How does one go 3 weeks post mature? Docs > miscalculate the due date? ... As it was, > his " official " gestation was 42 weeks. I had a planned pregnancy so I knew the conception *time* plus or minus a few hours, but my urine test was negative (followed up with a positive blood test 7 to 10 days later) and an ultrasound provided a due date that was two weeks later than my estimate and, coincidentally, my wedding anniversary. The OB/Gyn apparently assumes that all pregnant women become both stupid and emotional wrecks, but he went with my estimate, although he warned me that it was likely too early. My pg was completely normal, but my edd came and went with no baby. My OB/Gyn simply told me that 'we' would change the edd on my records to the more accurate one from the ultrasound. That date came and went too with me having lots of braxton-hicks but no real labour. I went to the doctor a day or two before my new 'accurate' edd and was told that if I wasn't in labour by the next weeks' appointment 'we' would do some tests. This was my first child, and I had been reportedly born many weeks late myself so I just thought it was kind of neat that the baby would be born on or near our anniversary. Nobody had ever told me that being just a few weeks late could be deadly, or I would have held a sit-in at the OB/Gyn's office until I got a stress/non-stress test and a second ultrasound! I went into natural labour and ended up in terrible distress from vomiting but I was in a lot of discomfort from having to stay on the bed with a monitor. When I asked why, I was told it was because I wouldn't lay still and they couldn't get a good reading. When I finally was allowed to stand up I suddenly (within five to ten minutes) went from four cm to 10 cm. Finally, someone told my labour coach that the baby was in distress and she conveyed this to me (I'd been talked into demerol because I was in pain that they said I couldn't feel and that was the cause of the vomiting.) He was born 2 minutes later and whisked off to the NICU, and about three hours later I was able to see him and to talk to his doctor. The neonatologist estimated, based on his condition and the state of his umbilical stump, that he was more than two weeks late, and probably as late as three weeks. He was 6.5 pounds in weight, but he had the head circumference and length of a 9 pound baby. (He is now about four and a half feet tall and weighs 110 pounds.) Whew! I'm not always so long-winded, I promise. It does bug me sometimes that for most of the first week of his life he was stuck in a plastic box and I could only reach in through the holes and talk to him from outside. As it turns out, with his high-frequency impairment it's unlikely that he heard a THING! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Wow...what a story! Thank you for sharing it. My daughter with the hearing impairment is also my oldest child and I didn't have the slightest clue about anything when I was pregnant and delivered her. I remember crying on the way home from the hospital because it seemed like a cruel joke that the world actually thought I could take care of a baby!! Ah...the memories. Daughter was in the birth canal for a horrible 3 hours of pushing. I've since read that many OBGYN's will take the baby via forceps or C-section if pushing approaches two hours....so of course I wonder now if the pushing damaged her hearing. Crazy thoughts I come up with some times! But just a comment on your story...I think the greatest lesson I've learned throughout motherhood is to listen to my intuition, the little voice, the whisper of God -- and never care what people think about me when I insist on something based on this little voice. Quick story: last year my hubby became sick...took him to doc who said he had the stomach flu. Hubby didn't get better, I called doc again and he said " plenty of fluids and rest " . Next day, at work, in the middle of a meeting -- I decided I needed to get home NOW and check on my hubby. Basically walked out of the meeting and the office with no explanation -- got home, loaded hubby into car, took to ER -- ruptured appendix. He barely made it through the night...much less the next three weeks in the hospital. People thought I had lost it when I just walked out of work that day. Afterwards, they were amazed I'd actually listened to the " little voice " and what the ramifications might have been had I waited another 4-5 hours until quitting time. I've had hard lesssons in learning to listen -- but I try to go with the intuition every time now. - Pam > > I had a planned pregnancy so I knew the conception *time* plus or minus a > few hours, but my urine test was negative (followed up with a positive blood > test 7 to 10 days later) and an ultrasound provided a due date that was two > weeks later than my estimate and, coincidentally, my wedding anniversary. > The OB/Gyn apparently assumes that all pregnant women become both stupid and > emotional wrecks, but he went with my estimate, although he warned me that > it was likely too early. > > My pg was completely normal, but my edd came and went with no baby. My > OB/Gyn simply told me that 'we' would change the edd on my records to the > more accurate one from the ultrasound. That date came and went too with me > having lots of braxton-hicks but no real labour. I went to the doctor a day > or two before my new 'accurate' edd and was told that if I wasn't in labour > by the next weeks' appointment 'we' would do some tests. This was my first > child, and I had been reportedly born many weeks late myself so I just > thought it was kind of neat that the baby would be born on or near our > anniversary. > > Nobody had ever told me that being just a few weeks late could be deadly, or > I would have held a sit-in at the OB/Gyn's office until I got a > stress/non-stress test and a second ultrasound! > > I went into natural labour and ended up in terrible distress from vomiting > but I was in a lot of discomfort from having to stay on the bed with a > monitor. When I asked why, I was told it was because I wouldn't lay still > and they couldn't get a good reading. When I finally was allowed to stand > up I suddenly (within five to ten minutes) went from four cm to 10 cm. > Finally, someone told my labour coach that the baby was in distress and she > conveyed this to me (I'd been talked into demerol because I was in pain that > they said I couldn't feel and that was the cause of the vomiting.) He was > born 2 minutes later and whisked off to the NICU, and about three hours > later I was able to see him and to talk to his doctor. > > The neonatologist estimated, based on his condition and the state of his > umbilical stump, that he was more than two weeks late, and probably as late > as three weeks. He was 6.5 pounds in weight, but he had the head > circumference and length of a 9 pound baby. (He is now about four and a > half feet tall and weighs 110 pounds.) > > Whew! I'm not always so long-winded, I promise. > > It does bug me sometimes that for most of the first week of his life he was > stuck in a plastic box and I could only reach in through the holes and talk > to him from outside. As it turns out, with his high-frequency impairment > it's unlikely that he heard a THING! > > > > > 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 January 12, 2001 Report Share Posted January 12, 2001 > As it turns out, with his high-frequency impairment > it's unlikely that he heard a THING! You know what I've found works best for keeping sanity? Try to look towards the future and not look backwards too much. I too used to be upset about the 1 1/2 years that JD couldn't hear me. All those wasted songs and talking. But it wasn't really wasted. With JD, it's how he learned to speech-read, or at least begin to. I'm sure your child knew you were there. It's one of those parent/child things. My hubby used to tease me because everytime JD woke up in his crib in the next room, I woke up too. Don't know how or why, I just know it happened. I've found that looking backwards too much is too depressing, especially during the early years. And at all costs, avoid the " what if... " trap. It's a sure way to become depressed in a hurry. Hugs, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 ...WELCOME TO THE GROUP!! I have a daughter named Allana and she has a severe to profound bilateral hearing loss. She is aided and we are using total communication with her at this time. Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 > -----Original Message----- > From: Daphne Potter > Hi , > Welcome to Listen-Up. I hope you will find this list a valuable > resource for> you (I have!). We share similar birth stories Wow! Exactly the same experience. So you would have also gone through the agonizing waiting to see how his outcome would be. It was almost funny how the audiologist was preparing for us to be grieving over his not being 'perfect' when they told us his dx, but by that point he'd been cleared on every other aspect of development so to have 'just' a hearing impairment--and to not even be deaf, was fabulous. > I was interested to hear that your son has some subtle language/social > issues. It's the most slippery thing. He doesn't understand jokes and there are gaps in his knowledge about things. Sometimes he doesn't seem to understand social cues either and I've watched it bother him. > I usually decide I'm being paranoid because of his > birth circumstances-- I keep waiting for the other shoe to drop > (as I'm sure > it was with you, they really wouldn't predict my son's intellectual > potential). True, but can read at or above his grade level, has no problem with math or social studies, etc. He just seems to have a hard time with questions like 'Why did...?' 'What might happen next?' and so on. He does seem to have the same level of difficulty with sports skills that I do but I don't really consider that to be an outcome of his trauma. > I've often wished to meet a family who had a child like but > older, so I > could get a sense of what's down the road for us. Perhaps I can learn from > your experiences! Welcome again. We've actually reached the level where I don't have a lot of major concerns--he's doing well academically and is adapting socially...really my concerns are very minor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 > So you would have also gone through the agonizing waiting to see how his > outcome would be. It was almost funny how the audiologist was > preparing for > us to be grieving over his not being 'perfect' when they told us > his dx, but > by that point he'd been cleared on every other aspect of development so to > have 'just' a hearing impairment--and to not even be deaf, was fabulous. Bingo. Exactly the same thoughts. We're so lucky-- and I'm reminded of it every time I see a picture of him as a newborn. > > > I was interested to hear that your son has some subtle language/social > > issues. > > It's the most slippery thing. He doesn't understand jokes and there are > gaps in his knowledge about things. Sometimes he doesn't seem to > understand > social cues either and I've watched it bother him. Same with us. I wonder if it is connected to the asphyxia-- I guess it must be. gets jokes but he doesn't get things like rules of games nor many social cues. He often wears what I call the " friendly tourist in a foreign land " look, where he smiles broadly and obviously has NO idea what's going on. > > I usually decide I'm being paranoid because of his > > birth circumstances-- I keep waiting for the other shoe to drop > > (as I'm sure > > it was with you, they really wouldn't predict my son's intellectual > > potential). > > True, but can read at or above his grade level, has no problem with > math or social studies, etc. He just seems to have a hard time with > questions like 'Why did...?' 'What might happen next?' and so on. never has any idea what's going to happen next. But it's also obviously not an intelligence thing. He has some areas where he is very smart. He's very detail-oriented and curious. He just has those holes. And, like your son, I think he's bothered by his lack of understanding sometimes. (Of course the social situation stuff is compounded by the hearing loss.) > We've actually reached the level where I don't have a lot of major > concerns--he's doing well academically and is adapting > socially...really my > concerns are very minor. I haven't quite gotten there-- I think when he gets to real school I'll feel better, but it is true that the things that have worried me most about him have not been his trauma-related issues or his hearing loss-- rather they have been the things that challenge every parent. Sleeping right, eating right, toilet-training, terrible twos, etc. Thanks for your reply-- you're the first person I've talked to who has seemed to understand some of our issues. -Daphne mom to (4 1/2 HI), Leo (2 1/2 normally hearing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Ooops! I meant to include info that I was replying to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 In a message dated 5/20/01 7:56:07 PM Central Daylight Time, jblau@... writes: > We look forward to being part of this list and chatting with you all. Right > now we'd especially like to hear any suggestions for his upcoming IEP in > regards to classroom accommodations, the FM system, etc. > > - Joe > Welcome to the list Joe & Kathie. I'm so glad you've hearing aids for . It's so wonderful to watch their first responses to sound. My 5 year old daughter wears a cochlear implant in her left ear and a hearing aid on the right. She just had it turned on in January - before that she'd been wearing hearing aids since 2.5. She had a profound loss in her left ear and severe to profound in her right. Now she hears in the normal to mild range. What a miracle! You'll find lots of support and advice here. As far as the IEP, educate yourself as much as possible with the IDEA (Individuals with Disabilities Education Act) and the laws concerning special education in your state, if possible before the meeting. As far as the FM system goes, the school system should provide one for during school hours, and if the IEP team, which includes you and your wife, deems that it is beneficial to 's education, you should be able to take the FM system home with you after school, for weekends, and holidays. That's what we did with our daughter and it made a huge difference! They don't usually volunteer this information, but if you ask about it and let them know that they are not able to deny that assistive technology according to the IDEA, they should cooperate. Good luck. You can find information on the IDEA on the Listen-Up website at www.listen-up.org Suzette, mom to (7), (5) CI, & Allie (2) Austin, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 > You can find information on the IDEA on the Listen-Up website at > www.listen-up.org I'll make it a little easier for you since there's tons of pages there. ;-) This page is where you'll find all the stuff mentioned. http://www.listen-up.org/rights/rights.htm You'll also not want to miss Sherry Z's page with Sample IEP's: http://www.ibwebs.com/iepinfo.htm Glad to have you with us! Kay Quote Link to comment Share on other sites More sharing options...
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