Guest guest Posted September 28, 2001 Report Share Posted September 28, 2001 Oh don't you just HATE that. I mean, most places have tap water that doesn't taste very " clean " ... sometimes you can hold up the glass amd visually SEE the particulates just floating around... BLECH!... When I'm at work, you NEVER catch me without my liter-bottle of water (even if I have to refill it from the drinking fountain I always have it). For some reason I never think to bring it with me to these church luncheons but no more... I'm gonna make a pointed effort to turn these events into my very own BYOB (bring your own beverage!). -Marlena > >I ask for water and they're like, well, here's a cup, you can get some >from the sink over there... nasty tap water that tastes like old pipes > & >chlorine, blech! And I'm always forgetting to bring my own, dang. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Welcome Naomi! Jeanne in WI Age 39 Open RNY 05/21/2002 314/ 222/150-175 5' 8 " djgraves@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 HI Naomi and welcome to the group . You have to feed your body for it to keep shedding the pounds you will do great Introduction > Hi, Everyone..... I'm Naomi, from Los Angeles. I'm 63, and had the surgery > Jan 14, this year. I started at 278# and am now 253#. I'm only on liquids > right now, but as of Tuesday can have soft food I don't have to chew. I'm > scared that when I go on the food I won't lose weight so fast. > > Thanks for listening..... Naomi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Welcome Naomi. Congrats on your surgery and wonderful weight loss so far. Its a great new journey and you have come to the right place for support! Theresa :0)~ *Nothing Tastes As Good As Thinness Feels* -- Introduction Hi, Everyone..... I'm Naomi, from Los Angeles. I'm 63, and had the surgery Jan 14, this year. I started at 278# and am now 253#. I'm only on liquids right now, but as of Tuesday can have soft food I don't have to chew. I'm scared that when I go on the food I won't lose weight so fast. Thanks for listening..... Naomi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 Welcome JD ! I'm right there with you. Stress takes it's toll. But your back on track and you know it works. I hope you enjoy the group as much as I do : ) Ginny 260 -180.5 -129 Goal for 2004 380 Pages Completed 502 Introduction Hi everyone. I lurk a lot and thought I should introduce myself. I've been back in WW for a couple of months now, and I'm down about 15 pounds. I have a lot to lose, but try to focus on how far I've come. I had lost 43 at this time last year, but my mother became ill and was hospitalized for a couple of weeks, then with me for another 6 weeks. I stopped meetings because it was too difficult and the stress just did me in - I turned to comfort foods and cooking..... sigh..... So here am I once more. I enjoy being on program but I lose weight very slow. I'm 60 years old and don't lose like I did when I was young! My husband and grown children are very supportive. My two daughters and even my married granddaughter are Weight Watchers members. They have watched me struggle with my weight through the years, and go up and down - yo- yo. They, like me, see this plan as a plan for success and hopefully will avoid the pitfalls I fell into. At one time (on a " diet " ) I had lost over 80 pounds. Now I have it to do again, but this program makes it a feasible journey because it is for life - and totally within reach!!!!! This group has been encouraging to me, and I appreciate you! Thanks - JD 261/246/175 (Is this how you do that?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 Welcome JD; Congratulations on the 15 pounds lost. I understand the use of comfort foods so well...they really help us out when times are bad. And, we can still have them...unfortunately just not as much of them as we used to enjoy. Sometimes, we can prepare them lower in fat,etc. and still enjoy the taste we so crave. I am 67 years old, and I lose slower, too, but exercise really helps, and I get a lot of that. I am an avid gardener, and I just came back inside from gardening today for 2 hours, putting the garden to bed for the winter. I still have more to do. Should finish by tomorrow. My husband and I got up at 5 A.M. this morning to go vote, and I am really tired. After coffee, and a light breakfast, we got there at 6 A.M. It paid off to go so early...we were all done, and on our way home by 6:30 A.M. The lines were beginning to form big time. Keep up the good work, JD. All the best to you always. Pat from K.C. Introduction Hi everyone. I lurk a lot and thought I should introduce myself. I've been back in WW for a couple of months now, and I'm down about 15 pounds. I have a lot to lose, but try to focus on how far I've come. I had lost 43 at this time last year, but my mother became ill and was hospitalized for a couple of weeks, then with me for another 6 weeks. I stopped meetings because it was too difficult and the stress just did me in - I turned to comfort foods and cooking..... sigh..... So here am I once more. I enjoy being on program but I lose weight very slow. I'm 60 years old and don't lose like I did when I was young! My husband and grown children are very supportive. My two daughters and even my married granddaughter are Weight Watchers members. They have watched me struggle with my weight through the years, and go up and down - yo- yo. They, like me, see this plan as a plan for success and hopefully will avoid the pitfalls I fell into. At one time (on a " diet " ) I had lost over 80 pounds. Now I have it to do again, but this program makes it a feasible journey because it is for life - and totally within reach!!!!! This group has been encouraging to me, and I appreciate you! Thanks - JD 261/246/175 (Is this how you do that?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 Hi JD and welcome! I'm not far from you in age, and I had a lot to lose when I started out too...but I'm here to tell you two things: First, this program WORKS! and second, you can do it. If I can do it, YOU can do it too! You'll find lots of support and help here on this group. Hang in there! Bette in CA 278/169/160? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 Great to have you here JD. Wonderful job on your loss! SWW mod 175/136.8/130 Introduction > > > Hi everyone. I lurk a lot and thought I should introduce myself. > I've > been back in WW for a couple of months now, and I'm down about 15 > pounds. I have a lot to lose, but try to focus on how far I've > come. > I had lost 43 at this time last year, but my mother became ill and > was hospitalized for a couple of weeks, then with me for another 6 > weeks. I stopped meetings because it was too difficult and the > stress > just did me in - I turned to comfort foods and cooking..... > sigh..... > So here am I once more. > I enjoy being on program but I lose weight very slow. I'm 60 years > old and don't lose like I did when I was young! My husband and > grown > children are very supportive. My two daughters and even my married > granddaughter are Weight Watchers members. They have watched me > struggle with my weight through the years, and go up and down - yo- > yo. They, like me, see this plan as a plan for success and > hopefully > will avoid the pitfalls I fell into. At one time (on a " diet " ) I > had > lost over 80 pounds. Now I have it to do again, but this program > makes it a feasible journey because it is for life - and totally > within reach!!!!! > This group has been encouraging to me, and I appreciate you! > Thanks - > JD > > 261/246/175 > (Is this how you do that?) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 When I wrote this 36 hours ago I was really reaching out to people who had " been there, done that " . I have read the posts for about a week and done some digging in the archives. This group seemed to welcome people with " open arms " . I realize that people have busy lives and I am an unknown but as I sit here crying I just wanted one person to let me know that he was going to be ok no matter what happens. I didn't find that here and we will now be lost to the archives. I applaud the support and information you share with each other. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 Oh no!!! My kids just both started school this week. My son that wears hearing aids started at a school nearly 2 hours from here. So I have been slow on the emails. I have definately been in your situation. It is very scary!! You do have to kind of go through the motions. They want to eliminate all of the options before giving you a hearing loss diagnosis. He will definately be fine. He has you looking out for him, and you are moving in the right direction. I am so sorry that your email didn't get responded to right away. If you need anything, or to talk, please don't hesitate to email me. Hugs, Tawnya Ian, mild/moderate 23 months , 4 hearing Re: Introduction When I wrote this 36 hours ago I was really reaching out to people who had " been there, done that " . I have read the posts for about a week and done some digging in the archives. This group seemed to welcome people with " open arms " . I realize that people have busy lives and I am an unknown but as I sit here crying I just wanted one person to let me know that he was going to be ok no matter what happens. I didn't find that here and we will now be lost to the archives. I applaud the support and information you share with each other. 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 September 14, 2005 Report Share Posted September 14, 2005 You're right about being busy and overwhelmed. I'm one of the original members of the group and my son is now going on 15. I'm just too busy dealing with two teenage kids, a new school, supervising homework, helping with Marching Band and running a small home business to really have time to write. However, I did want to respond to your plea for help and tell you that it does get better. I've spent almost 15 years dealing with our son 's hearing loss and though life is still not okay all of the time, it's terrific alot of the time. We've come such a long way! Our son has had multiple surgeries including open heart at age six. He was never going to walk, talk, eat or function. He was to have CP and be vegetative in a wheel chair. He's had progressive hearing loss until he is now legally deaf. But hard work and determination can pay off. is now in 9th grade, mainstreamed. Heart repaired. Can beat all except one guy in his class in track. Is a gifted drummer and just now started taking guitar as that was the only class open to him in highschool. He somehow can hear enough of the notes to play it and loves making music every night. We bought him an electric acoustic guitar with an amplifier and his face lit up like magic...like he'd seen an angel. It was the first time he'd heard the beauty of the music. We've been wanting to get him a CI for the last two years, but he's anaphylactically allergic to antibiotics so that's a serious procedure for him. We're thinking maybe next summer. is an incredible lipreader which was all taught to him using cued speech and specialized instruction because he had NO natural lipreading ability. He's in gifted and talented biology and geometry, with honors for english and history because he hates to write, though he's been able to write Harry Potter like stories since age 7. He just built his own gaming computer with multiple video cards, and specialized casing, power supplies etc. He's been through depression and is coming out of it. He's been used and abused by teachers and some children. However, he has now developed incredible social skills, makes friends who are charming and " good " kids. All of them happen to be hearing because he has no hard of hearing peers his age in this town. The girls are now chasing after him because he's tall and handsome and has an " accent " which is what his speech sounds like because he has very little deaf quality to it. The success has come at a price: 7 days a week of speech therapy for 9 years, 3 occupational therapies and 2 physical therapies a week for 7 years. It has involved five file cabinets full of State Department of Education Complaints, U.S. Department of Education Complaints and U.S. Department of Education Office for Civil Rights complaints. The road has been long but oh so rewarding! At the start of school this year, I watched my son play in the marching band as the small drum squad of 7 drummers marched down the auditorium in front of the new freshman class. They flipped their sticks and marched with such military precision...and played in perfect rhythm....no one, except us, knew our son was deaf. At the end of eighth grade, we watched our son and four of his best male friends enter a lipsynch contest to the music Ghostbusters. They came in third but were the crowd favorite. When the refrain of the song, said " Who do you want... Ghostbusters...I can't hear you! " stepped forward and was the one to put his hand to his ear and lean to the audience like he couldn't hear. That brought a roar from those who knew him. My computer is acting up so I can't really make the point that I want to. The bottom line is that there will be ups and downs but everything does turn out all right in the end. Sometimes you'll feel like all is lost, but you'll pick yourself right back up and keep going because you have to. People will tell you that they don't know how you do it...you must be a strong person. Actually, you don't know how you do it either. You just do it because you have no choice. And you feel frail, not strong. But you keep plugging. You cry, you rejoice. It gets better and soon, things that seemed overwhelming like inserting hearing aids, checking batteries, understanding audiograms are second nature. It's like driving a car...you just do and don't even really think about it. You and your child move on with life and soon you'll too be too busy enjoying the little things in life to answer another " newbies " message. I'm glad you reminded us about the need to respond. It WILL be okay. Like anything, it just takes time. -- Original message -------------- > When I wrote this 36 hours ago I was really reaching out to people who > had " been there, done that " . I have read the posts for about a week > and done some digging in the archives. This group seemed to welcome > people with " open arms " . I realize that people have busy lives and I > am an unknown but as I sit here crying I just wanted one person to let > me know that he was going to be ok no matter what happens. I didn't > find that here and we will now be lost to the archives. I applaud the > support and information you share with each other. > > > > > > > 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 September 15, 2005 Report Share Posted September 15, 2005 In a message dated 9/15/2005 12:23:52 A.M. Eastern Daylight Time, gallaj@... writes: I realize that people have busy lives and I am an unknown but as I sit here crying I just wanted one person to let me know that he was going to be ok no matter what happens. I didn't find that here and we will now be lost to the archives. I am so sorry your post went unanswered! I have just scanned through my " old " emails and don't see your original post. We normally greet new people, share our stories, offer shoulders for cry on and whatever information we have. Open arms is the norm here. None of really know each other -- we met here. It's not at all a closed little group. Instead its a warm and caring one made of strangers who suddenly feel like friends, and become friends. Yes, we all have busy lives and the start of school is one of the worst for me. But I work from home and this list is my daily " coffee break. " Sometimes it's the way I avoid tasks or procrastinate. Your post should not have languished unanswered. Please don't give up on this list. I would love to read your original note and then bore you silly with my opinions and ideas. So, if you'd like you can send it to me off-list. I'm Jill, mother of 2. Ian (14 -- turning 15 in about a week) is HOH. He has a progressive moderate bilateral conductive loss. Quite the mouthful. The simple way to say it is just that he is losing his hearing and may be profoundly deaf by the time he is an adult. No one can tell us when or what the final outcome is going to be. So we just take it as it comes. Ian is mainstreamed in our local high school. My younger child is (11), no hearing loss but as stubborn and opinionated as I am. We found out about Ian's loss when he was about 7. He was raised as a hearing child and up to that point, we had no clue that there was a hearing problem. Ian is oral not because of some plan or therapy but because he was raised hearing. We come from a completely hearing family and we started from nowhere when learning about his hearing loss. Too many doctors, too many opinions, a few wrong diagnosis, fighting the school district ... it was a long and overwhelming process. And in the midst of all that, we were on our own to sort it out. We found a few kind people who helped, gave advice, pointed us in the right direction and gave us hope that things were going to be okay. After all that was pretty much done, I stumbled into this list. I think it's a godsend. People who have been through what we have. Others just starting out. There's a mix of all philosophies, and the one constant thread is that there is no one right answer. The " right " one is what works for your kid and the people here try to help each other find that. Ian is almost 15, a sophomore in high school, so that makes me one of the older moms here. Now we're at the point of talking about colleges. He's become a nice young man and I am amazed that almost 8 years have passed since we started this. There ... that's our story. Please believe the people here when they tell you it IS going to be okay. You're doing a great job! I know that because you're reaching out and trying to find the answers. That dedication alone is going to make it okay. Please write again. You weren't ignored intentionally. Like I said, this isn't a closed community here. I come for support and to give back some of the help and support I got when we were starting out. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Oh My Goodness...no one on this list would want you to feel that way. I have been back through my files can not find your original note. Please send it again for all of us. My name is Tammy. I have three girls- who is 14, starting her freshman year, and in the marching band-wish someone had told me it would take over our lives. who is 10 and a challenge to stay a step ahead of her learning is also my drama queen. These two have normal hearing except for teen and preteen hearing problems...argh. Then there is my . She is now 7. I joined this list when she was 10 months old. It was the rope thrown to me as I was going under. I could not convince the doctors that there was a problem. They were convinced that it was due to her ear infections and fluid in the ear. had those problems as well so I did have experience already with that. At 8 months is when I felt there was a problem, at 12 months I put her on the floor with some toys facing away from the doctor. He was telling me yet again that her ears were still infected. I was telling him yet again that it was more than that. I took his PDR (big fat book) off his desk and threw down as hard as I could on the floor. didn't move. He looked at me and said. " I think we have a problem. " I wanted to scream. So, tubes the following month and aids after that. At age 5, after 3 long grueling years of research and questions, a move across the world, we had her implanted. It was the BEST decision in the world for her. At the time of implanting her signing ability was that of 3-4 year old and her oral language of a 12 month old. After she was turned on, 6 months later she had gained 18 months of oral language and 2 years of signing language. Now her sign is age appropriate and oral language is lagging by only 18 months. We have had many difficulties along the way but we have many successes too. She is mainstreamed this year for the very first time for everything but language arts. She receives AT (3x) and Sp.(5x) a week. It has worked for us. She has an interpreter every where she goes at school. I have been working in an HI classroom as an aide since last Feb. It is wonderful for me. I am able to continue to use and learn sign as I work with the kids. We just recently learned however, that the Army will be moving us so all of those fears come back again...will we find the right school, the right audi, what about sp and AT. Many people on this list have been through this. Please don't give up on the list. Many experiences here, many people with different perspectives. I was lucky enough to meet -'s mom right before was implanted (hi ), but for the most part we don't know each other but we are all friends. I tend to be a lurker on the list unless I see something I can add to because we are busy, and there are many with help. Jill is so comical, Barbara has been doing this for years, and in GA is always there. Just to name a few. There are many many people here. Keep trying. We welcome you with open arms and hearts that know where you are coming from and what you are facing. Good luck, Tammy Tamala S. Woodburn Creative Memories Consultant Visit my NEW web site for product and career information _www.creativememories.com/tammywoodburn_ (http://www.creativememories.com/tammywoodburn) ask me about earning extra income getting cm products at cost New Products , New Ideas, Creating Simple Pages Preserving Your Precious Memories Call to schedule your class Creative Memories is " Memory Keeping at Its Best " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 HI - I'm so sorry I haven't responded. It's the start of the school year, I work full time for a university so it's also my busy time at work and haven't been home before 8:30 any night this week! I'm sure that's the same for many of us - it's not that we don't care (we truly do), we're very busy right now. I'd suggest you re-post your message about your son. Oftentimes, because the listserve is so busy, I don't respond if I don't know (rather than responding saying that I don't know). I know the lack of responses isn't intentional - I'm just sorry we weren't there when you needed us! Hugs, Barbara gallaghgators wrote: >When I wrote this 36 hours ago I was really reaching out to people who >had " been there, done that " . I have read the posts for about a week >and done some digging in the archives. This group seemed to welcome >people with " open arms " . I realize that people have busy lives and I >am an unknown but as I sit here crying I just wanted one person to let >me know that he was going to be ok no matter what happens. I didn't >find that here and we will now be lost to the archives. I applaud the >support and information you share with each other. > > >**************** > >Barbara Mellert >Manager, Social Science Computing > Kiewit Computing Services >Dartmouth College >13A Silsby Hall, HB 6121 >Hanover NH 03755 >Telephone: 603/646-2877 >URL: http://www.dartmouth.edu/~ssc > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Hi there, I am so sorry you felt that way. I wanted to ask a bunch of questions but hadn't had to the chance to reply to your initial note. I am not a pro at this stuff, my son has only been definitively diagnosed for a little over a year. He too failed his newborn screen and then passed the follow up ABR. Tests in between then and now had slight loss to no loss, etc. (But most were at my pediatricians office). I have found however that trusting the pediatrician on hearing issues is not the way to go. They will tend to keep trying to fix hearing problems when that is not their specialty. Your pediatrician should know that since your son failed his newborn screening and again had issues in preschool that he should refer him to a specialist now that he is having hearing issues again. (for the second time)I would just want to be sure this is something that can be cleared up with medicines for sure and have his hearing tested by pros in the field. I've never heard of negative pressure hearing loss. I looked it up and it looks like because it's a conductive type of loss it can possibly be corrected or helped. (This is where others on this board have much more expertise). I hope this helps you and makes you feel a little better. You may come to find out that your son just has this recurrent problem or that he does have a hearing loss, but either way he will be fine. All of us have wigged out and have been overwhelmed by the little information out there and the fear of what is to come. But everyone on here has come out on the other side, especially ask Jill or others. They have older kids that are doing great...just be aware you now are your sons only best advocate. Do not rely on others to always do what needs to be done. (I don't mean this maliciously...just I think sometimes doctors are in denial!) Regina mom to Max 4 1/2 mod/severe SNHL Cecelia 2 hearing thus far > I am just starting down this road with mykidd who will be 7 on > Saterday. Well, I guess I should have know we would eventually be > here when he failed his screaning at birth. He later passed but has > had 3 hearing tests since then that were borderline. When he failed > his preschool screan he was re-tested by the school district > audiologist and we were told the loss was due to negative pressure > > At the beginning of August of this year we went to the ped for a > suspected sinus infection and they also checked his ears. The Ped > immediately did a hearing test which showed a 40 dB loss at the high > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 In a message dated 9/14/2005 11:23:42 P.M. Central Standard Time, gallaj@... writes: I realize that people have busy lives and I am an unknown but as I sit here crying I just wanted one person to let me know that he was going to be ok no matter what happens. I am so sorry that you are feeling alone. I am one of those who has piles of emails " to be read sometime " and I often let them slide. So I want to welcome you to the list and assure you that your son IS going to be ok. If you can get a chance to meet deaf and hard of hearing adults, that may go a long way in helping you to feel that it WILL be ok. Welcome to the list and I hope that you will find the support you need here. Putz Illinois Families for Hands & Voices _www.handsandvoices.org_ (http://www.handsandvoices.org/) _www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/) Email: support@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Hi. I'm sorry I missed your original post. Like all the responders, I have been busy between school, multiple doctor appointments, soccer. But please don't feel like you're not wanted here. I joined this list in April and have felt very much at home. The parents on this list have been where you are so you're not alone. I have two children, Emma (6) and Emmett (3 1/2). We found out about Emmett's loss last year. He had a history of recurrent ear infections in his right ear since he was 10 days old and hospitalized for RSV. He contracted a staph infection in the right ear at that time (I don't know how I was smart enough then to have it cultured ... I was out of my mind with worry, fear and exhaustion). We have since found out that his right ear is profoundly deaf and unaidable, even though he passed his newborn screening. Since last year, he has started losing hearing in his left ear. He lost 10 db over 6 months. He's aided on that ear currently. We've had CT scans, blood work, urine tests ... we've tested him until we couldn't take it anymore. We don't know why he's losing his hearing. We suspect his right ear lost hearing because of the staph infection. That ear is not a candidate for CI. But his left is so if that hearing goes, we have a fallback plan. I joke about how I'm still struggling with the grief about this. But it isn't a joke. I am sometimes consumed with it. I've just started counseling and I have to say that it's making a difference for me. It's not that I think there's anything wrong with Emmett. On the contrary, he's been a gift to our family, teaching his sister tolerance and giving my husband and myself quite an education about things we never knew we need to know! But I wonder why I can't stop this, or why I didn't stop it from happening in the first place. Why is it happening at all? He has multiple life-threatening food allergies (he only eats what I make him) and asthma. Now, that's not a lot considering I know other families have lots on their plates, but for me it's been a lot to handle. And more than I think a little 3 1/2-year-old body should have to handle. Talking to people, including this listserve, is what will make the pain better. Please consider posting again and giving the members another chance to welcome you. Welcome, Johanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 I also missed your intro post -- we were on vacation and I went " no mail " for a week. Then, the day after we returned was the first day of school, so life was hectic. I'm not sure if I missed the post because I had to just skim for a couple of days, or if it didn't show up. This group is the greatest and would never intentionally snub anyone. Please know that you are welcome here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 In a message dated 11/28/2005 10:46:36 A.M. Eastern Standard Time, mizzkb00@... writes: I would like to just connect with parents who have already started the lifestyle change that we will be starting soon. I use to refer to it as our new reality. But truthfully, it very quickly became our regular life. And it doesn't feel like I had a lifestyle change. We just made adjustments so everything fit. This is a very good place to come and talk with other parents. The guiding rule is a good one -- every child is different and so the choices made for your child will be slightly different than anyone else's. No choice is the " right " one because there are so many factors at play in each kid. What works for our Ian won't work for others. Here you'll find supportive voices, opinions (that you're free to ignore or follow) and help to find answers. It's a nice community. I'm Jill. Our son Ian, now 15, is HOH (hard of hearing) at this point with a progressive bilateral hearing loss. At this point it's in the moderate range. He will most likely be profoundly deaf by the time he is a young adult. We learned of his loss quite late compared to most people on this list -- he was about 7. He wasn't aided for another year due to some bad advice and a really incompetent ENT. Ian is oral because he was born hearing and lost his hearing post-lingually. He's aided in both ears, mainstreamed in our local high school, has an FM system for school, and the services of a TOD (teacher of the deaf) every day at school. All that may sound overwhelming to you. It was to us at first. At times it scared the daylights out of me because I had no clue what the future held for our son. At first it was loads of doctor visits, some surgery, and then some more doctors. But after a short time all that calmed down. The constant doctor visits are now once or twice a year. Ian's aids are bright blue and his molds are red-white-blue swirls and I don't even notice them anymore. I can happily tell you that it all quickly becomes part of life's normal routine. Ian's aid batteries are listed on the grocery list, his audiologist visits (every 6 months) are viewed like a visit to the dentist -- but with less trepidation. When his aids are out or turned off, he'll laugh at us and said " yo deaf boy can't hear ya " and make a goofy face. Our D/HOH (deaf/hard of hearing) kids are amazing creatures. Their natural coping skills are a marvel. My son constantly amazes me and makes me proud that he's mine. Mostly because he's just an average kid with a dry sense of humor. When he was little, the idea that my kid would be an " average boy " sounded like a dream. Yet he is. Don't worry if all the technical terms and acronyms seem odd. There're are too many to take in all at once. Ask if you don't understand them -- we're glad to explain just about anything. We've all been at the beginning. For my family it's been 8 years and it feels like both a lifetime and mere seconds. I wish I'd found this list when we were starting out. The collective knowledge here is invaluable. Once again, welcome, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 In a message dated 11/28/2005 9:43:16 P.M. Eastern Standard Time, davidsanford05@... writes: Would love to chat along the way to share stories, success, etc. , Welcome! Chatting is what we do best. On and off topics (grin). So please feel free to ask anything, we'll do our best to answer. There are many parents here with little ones who are aided, and they can share stories about keeping them in, keeping them from falling off (I understand toupe tape is a favorite) and anything else you can think of. My D/HOH son is now 15. We learned of his hearing loss much later than most on this list, and he was aided when he was about 8. Ian loved his aids from the first day. His first set of molds were of a harder plastic than the ones he has now, so getting us to wearing the aids was a bit tough -- his ears got sore. But he was determined. His second set of molds was of a much softer plastic/polymer and we've stuck with that texture ever since. We see a very drastic difference between when Ian has his " ears " in and out. Night and day. Ian has a moderate loss, so he can hear some without his aids. Even when his loss was still a mild one and he preferred to wear his aids because they gave him more detail. So, even if you think there's only a little difference, from our experience, wearing the aids it is worth it. Ian wears his from the moment he gets up until moments before falling asleep. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 - Glad you made it! Welcome, finally! We use signing with my 13 year old, who has been in a total communication program her entire life, first in a public school and now at a deaf residential school, WPSD - our choice for her -but not for everyone! She also wears a cochlear implant. As she was implanted later, oral language is new to her and we use signs to help augment speech (total communication). Where do you live? SOme of the members may be able to help you with speech and language therapists in your area. We have people from all over the world. M. > > Hello, > > My son Carson was born at 27 weeks and spent 6 1/2 months in ICU. He has hearing loss in both ears and we just received his hearing aids for the first time. > > > -------------- Original message -------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Hello, I live in Atlanta Ga, Cherokee County... DAVID -------------- Original message -------------- > - Glad you made it! Welcome, finally! > > We use signing with my 13 year old, who has been in a total > communication program her entire life, first in a public school and > now at a deaf residential school, WPSD - our choice for her -but not > for everyone! She also wears a cochlear implant. As she was > implanted later, oral language is new to her and we use signs to help > augment speech (total communication). > > Where do you live? SOme of the members may be able to help you with > speech and language therapists in your area. We have people from all > over the world. > > M. > > > > Hello, > > > > My son Carson was born at 27 weeks and spent 6 1/2 months in ICU. > He has hearing loss in both ears and we just received his hearing > aids for the first time. > > > > > -------------- Original message -------------- > > > > > > > > > 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 November 29, 2005 Report Share Posted November 29, 2005 awesome-it appears as though we have some similarites-It does appear after talking to alot of people that I am very fortunate that I live in a county that has has PHENOMENAL Infants & TOddlers program that was already involved in. They are actually the ones who brought the hearing thing to our attention (speech therapsit) and it's a good thing she did! They are ready to give us any and everything we need-still at home in our own environment..we are just waiting the week until I can meet with the team at Hopkins so review everything and get fitted for the hearing aids. Email me anytime at home mizzkb00@... Thanks for underrstanding my feelings and capturing it on paper. My mom had a kidney removed 2 years ago and my dad was diagnosed with a dormant brain tumor and I was fine throughout all their ordeals...but when it came to , I was WEAK! i COULDN'T GET MY THOUGHTS TOGETHER FOR DAYS AND MY BRAIN KEPT PLAYING THE WHAT IF? HOW COULD? GAME. People in this group have shared in such a way that I managed to calm down and actually start doing my own research. Thanks again and hope to hear from you soon if you have time. > > > Hello, > > My son Carson was born at 27 weeks and spent 6 1/2 months in ICU. He has hearing loss in both ears and we just received his hearing aids for the first time. He is 19 months now. We (Mom and Dad) are nervous, scared, etc. but are starting to adapt. He is not wearing them all day yet but we are slowly getting him to wear them a little longer each day. We have noticed a huge difference yet, but at the same time its only been two weeks. > > We are in the begining stages of trying to find a speech therapist to help with his speech development. > > Would love to chat along the way to share stories, success, etc. > > > -------------- Original message -------------- > > > I am a stay at home mom of two, ages 8 and 18 months. We just found out the day > > before Thanksgiving that my son has suffered profound hearing loss supposedly in > > both ears as a result of severe prematurity. It's believed it has been a > > gradual loss since perhaps March or so. > > > > I would like to just connect with parents who have already started the > > lifestyle change that we will be starting soon. > > > > Kathy > > ___________________________________________________ > > Try the New Netscape Mail Today! > > Virtually Spam-Free | More Storage | Import Your Contact List > > http://mail.netscape.com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Welcome Bonnie, You and your son have already been through so much to get to this point! (I was a nurse in a children's hospital for much of my career) Glad you found us and hope we can be a good support for you. Does your child use oral or manual communication?? We did Auditory Verbal and they stress mainstreaming so the child can have good language and social models for classmates. My youngest child has a mod-severe loss and we have always mainstreamed her. My middle child has no hearing loss, but her first babysitter had a child with Down Syndrome that my child played with all day. At 18 months we switched baby sitters and my daughter's language just exploded - which I really think was the result of playing all day with a child with typical language skills. The switch had nothing to do with the down syndrome issue and we were very surprised by the very obvious spurt in language. Another thing to think about is that a class for kids with autism by definition would not have good social or language models due to the nature of autism. But then you have the kids without disabilities in the class. But I worry about putting a child with social delays that are most likely temporary in a class full of kids with more permanent social delays. The expectations would be very different. A special preschool class can be very beneficial if it is directed to hearing loss - whether it is an oral class or a sign language class. Depending on which mode of communication you are using would be the big question. We chose NOT to put our child in a TC classroom for preschool because we were emphasizing oral communication, and we knew the expectations for that class were quite low. We found that several things were important in the preschool years. Primary was 1. expectations and 2. a willingness to learn about the impact of hearing loss on the part of the teacher. And a willingness to use an FM system, which would probably benefit Elias since his loss is mod-severe. Do you have a school audiologist working with your team?? Keep asking questions, especially if we use jargon or acronyms! Glad you're hear and that your little guy is doing so well! in GA ----- >>In general, is it better to go with a special preschool, even if it is more >oriented to kids on the autistic spectrum, or stick with his regular >preschool and support services? > >I am sure I will have more questions in the future! > >-- >Bonnie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Welcome Bonnie, You and your son have already been through so much to get to this point! (I was a nurse in a children's hospital for much of my career) Glad you found us and hope we can be a good support for you. Does your child use oral or manual communication?? We did Auditory Verbal and they stress mainstreaming so the child can have good language and social models for classmates. My youngest child has a mod-severe loss and we have always mainstreamed her. My middle child has no hearing loss, but her first babysitter had a child with Down Syndrome that my child played with all day. At 18 months we switched baby sitters and my daughter's language just exploded - which I really think was the result of playing all day with a child with typical language skills. The switch had nothing to do with the down syndrome issue and we were very surprised by the very obvious spurt in language. Another thing to think about is that a class for kids with autism by definition would not have good social or language models due to the nature of autism. But then you have the kids without disabilities in the class. But I worry about putting a child with social delays that are most likely temporary in a class full of kids with more permanent social delays. The expectations would be very different. A special preschool class can be very beneficial if it is directed to hearing loss - whether it is an oral class or a sign language class. Depending on which mode of communication you are using would be the big question. We chose NOT to put our child in a TC classroom for preschool because we were emphasizing oral communication, and we knew the expectations for that class were quite low. We found that several things were important in the preschool years. Primary was 1. expectations and 2. a willingness to learn about the impact of hearing loss on the part of the teacher. And a willingness to use an FM system, which would probably benefit Elias since his loss is mod-severe. Do you have a school audiologist working with your team?? Keep asking questions, especially if we use jargon or acronyms! Glad you're hear and that your little guy is doing so well! in GA ----- >>In general, is it better to go with a special preschool, even if it is more >oriented to kids on the autistic spectrum, or stick with his regular >preschool and support services? > >I am sure I will have more questions in the future! > >-- >Bonnie > > Quote Link to comment Share on other sites More sharing options...
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