Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 , Very, very well said. Joyce, it's true, we're all here, you hang in, one day at a time and learning and practicing and getting good help from the audiologist will take you there a step at a time. Deb --- M Jansen <nucleus24@...> wrote: > Hi Joyce, > Losing your hearing suddenly is a shock. It > happened to me twice. > Lost the hearing in my right ear in a matter of a > week or so. Thought I > was congested, when the " cold " or flu went away, I > was deaf. Gone. Zero > hearing in the left ear. 20 years later, I got hit > by a car and all the > hearing went in the right ear. Yes, it is > frustrating, and yes you cry. > Being deaf in one ear in NO WAY prepares you to be > totally deaf. > You have an implant. Step in the right > direction. Now, HOW MANY > mappings have you had? Because it takes a lot more > than one or 2 to get > the processor set for you to hear. > You need to wear the processor all the time you > are awake to allow > your brain to adjust to how you are hearing with it. > > You can get books from the librarary and audio > tapes to go with them, > and listen to someone reading the book while you > read along with it. > That will help your understanding of speech. > If your insurance covers AV (audio verbal) > therapy, that will help you > learn to hear and listen. (2 different thing). > You've only had the implant for a few months. If > you were implanted > late in September, and turned on probably late in > October, you are only a > few month past activation. It takes time. It took > me about 3 months to > hear the way I do now, and that was with wearing the > processor every day, > every minute I was awake. At first I wondered if I > went through all this > to have annoying noises in my head. But my brain > finally figured it out. > You've heard for years, so you have auditory memory > for words and what > they sound like. > This is a journey back to hearing, not a race. > Some people hear and > understand the minute they put the processor on. > Most of us do not. Do > not compare yourself to someone else or their > progress. > Often hearing loss has no explanation. You were > already wearing > hearing aids when your hearing went. Drs sometime > try things like > steroid treatments, inhalation and dilation therapy. > Sometimes they > work, sometimes they don't. Most don't work very > long if they work at > all. > Now, you need to sit down with your processor and > the instruction book > and read how to use the processor. Then use ONE map > for a few days and > note what you can and cannot hear. If you are > hearing at all, then you > have hearing. It might not be understandable, but > it IS HEARING. First > step. Getting it to be understandable takes more > mappings. You have to > keep going back for the mappings. Getting upset > and angry about it > isn't going to help. It's normal to be frustrated, > but try to figure out > how to use the processor (instruction book will > help) or ASK the > audiologist to show you how when you make your next > appt. > You can switch from the first mapping to the 2nd. > Find out what he > has set on the different programs. Perhaps he can > do just a plain > mapping with none of the fancy ADRO, BEAM or other > features yet. Just a > straight ACE program. Take this to him and show him > the suggestions. > You should be able to find a program that is > better, or at least " not > as bad " as the others. And you work from there. It > takes time to get a > good mapping. You need to allow your brain to > adjust to this new way of > hearing. Because I know you want to hear your > children's voices, and all > the other things you are missing now. > You are willing to try, you just need to know > HOW to try. How many > mappings have you had since your first one? > Because first mappings just > set a threshold (T) and comfort © level that are > very close together. > And the sounds you get are nowhere near where they > will be with your > later mappings. You need to hang in there and have > PATIENCE, > PERSEVERENCE, AND PRACTICE. I know I was > frustrated beyond belief with > my first mappings. But it did get better. And more > mappings help, too. > You are NOT alone in this. We've all been there. > It is not too > late, and it can be made better. A lot better. > Have patience with > yourself. Give it time. > Are you familiar with the Serenity Prayer? > > God grant me the Serenity > to accept the things I cannot change > The Courage to change the things I can > And the Wisdom to know the difference? > > You cannot change the fact that you lost all > your hearing. You can > accept that you have lost your hearing. And you can > go back for as many > mappings as it takes to get the cochlear implant > working so you can hear > the way the implant will allow you. That's the > courage to change the > things you can. > Keep in touch. We're all with you in this. > > > Can someone please email me and help me before its > to late.I do not > want to sound rude but if or who ever helps me > please do not > say.Your not trying hard enough.I am trying very > hard because I do > not want to live in a world of silence.I hope and > pray someone can > help me.God Bless,My name is Joyce > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ We won't tell. Get more on shows you hate to love (and love to hate): TV's Guilty Pleasures list. http://tv./collections/265 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 My 5 year old is driving me crazy. She has autism. She has fairly good language,some echolahia(sp?). She is very hyper,some stimmy behavior, and spends her free time trying to piss me off.She gets a real trill out of being bad.She dumps things eggs ,shampoo you name it.Poor independent play skills play skills but will not sit and play with me or listen to a story.Climbs on everything. Very ADHD most of the time. She is very fast and destructive.Gets 30 hours of aba,3 hours of playgroup, biweekly OT, and weekly speech. We live on acreage so the yard is about the only productive place other than therapy. The therapists seem unwilling or unable to help me. I have three other kids including a 4 year .. She loves to get a reaction and much of the behavior is dangerous so can not be ignored.Any ideas? Something to mellow her out or some behavior technique? She is at every 3 minites doing something unsafe,dangerous, destuctive. Worst time of day 4-7. IDEas anyone? From: Becca Gater <becca.gater@...> Subject: Fels-Naptha becca.gater@... Cc: autismbiomed , autism_centralNJ , , " Goodman " <asdnutrition@...>, " Ronda Wagner " <rondawagner@...>, " Ken & Waguespack " <kwagues@...>, " stephanie ringeisen " <stargazersteph@...>, " cpac-autism " <CPAC-autism > Date: Friday, July 10, 2009, 5:26 PM I was wondering if anyone knew anything about Fels-Naptha. My mom and I are considering making our own laundry detergent but are concerned as Fels-Naptha is known to be an irritant.Thanks Becca Super Mom to the Minis and Kayla, 5 years old 22 months old ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~ April is Autism Awareness Month But EVERY DAY is Autism Awareness Day ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 take her off sugar milk and gluten I did u will have a diferent child in 10 weeks Becky > > From: Becca Gater <becca.gater@...> > Subject: Fels-Naptha > becca.gater@... > Cc: autismbiomed , autism_centralNJ , , " Goodman " <asdnutrition@...>, " Ronda Wagner " <rondawagner@...>, " Ken & Waguespack " <kwagues@...>, " stephanie ringeisen " <stargazersteph@...>, " cpac-autism " <CPAC-autism > > Date: Friday, July 10, 2009, 5:26 PM > > > > > > > > > > > > > > > > > > I was wondering if anyone knew anything about Fels-Naptha. My mom and I are > > considering making our own laundry detergent but are concerned as > > Fels-Naptha is known to be an irritant.Thanks > > Becca > > Super Mom to the Minis > > and Kayla, 5 years old > > 22 months old > > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~ > > April is Autism Awareness Month > > But EVERY DAY is Autism Awareness Day > > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 Not an expert by any means....But maybe look into any afternoon supplements you are giving her, where 3-4 hours later you are getting a reaction. I know that GABA is supposed to calm them down, but some get bad diarrhea from it. May be up her zinc and magnesium as these too are supposed to be calming. Lower her B vitamins as these tend to increase hyperactivity. Maybe she needs B vitamins but doesn't have enough of the prescursors to uptake the vitamins ( just throwing that one out there ...heard it once, don't know much about it, but you could look it up) 4-7 is my bad time too in my house. We just got a new organic rug put into our living room and it wasn't even 30 minutes later and he smeared a whole tub of play-doh into it! Last week it was a carton of eggs all over the play room. It took me over 24 hours to clean everything up, toys, carpet, blankets, furniture! My husband always asks about the things that didn't get done that day and I'm like " I don't know what I did all day, but I know I spent all day doing it. ....these kids are crazy!!! (3 yr. old daughter too). Hang in there, I'm doing the " crazy child " thing too all day. You are not alone!! If I think of anymore things to help her calm down I'll post again! p.s I know that l-glutamine makes kids hyper, and that epsom salt baths calm them (i'm sure you knew that one) Hang in there, Rose ________________________________ From: Evangeline <eaofthehills@...> Sent: Friday, July 10, 2009 8:37:58 PM Subject: going crazy My 5 year old is driving me crazy. She has autism. She has fairly good language,some echolahia(sp? ). She is very hyper,some stimmy behavior, and spends her free time trying to piss me off.She gets a real trill out of being bad.She dumps things eggs ,shampoo you name it.Poor independent play skills play skills but will not sit and play with me or listen to a story.Climbs on everything. Very ADHD most of the time. She is very fast and destructive. Gets 30 hours of aba,3 hours of playgroup, biweekly OT, and weekly speech. We live on acreage so the yard is about the only productive place other than therapy. The therapists seem unwilling or unable to help me. I have three other kids including a 4 year . She loves to get a reaction and much of the behavior is dangerous so can not be ignored.Any ideas? Something to mellow her out or some behavior technique? She is at every 3 minites doing something unsafe,dangerous, destuctive. Worst time of day 4-7. IDEas anyone? From: Becca Gater <becca.gater@ gmail.com> Subject: Fels-Naptha becca.gater@ gmail.com Cc: autismbiomed, autism_centralNJ, , " Goodman " <asdnutrition@ aol.com>, " Ronda Wagner " <rondawagner>, " Ken & Waguespack " <kwaguesoptonline (DOT) net>, " stephanie ringeisen " <stargazersteph@ hotmail.com>, " cpac-autism " <CPAC-autism> Date: Friday, July 10, 2009, 5:26 PM I was wondering if anyone knew anything about Fels-Naptha. My mom and I are considering making our own laundry detergent but are concerned as Fels-Naptha is known to be an irritant.Thanks Becca Super Mom to the Minis and Kayla, 5 years old 22 months old ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~ April is Autism Awareness Month But EVERY DAY is Autism Awareness Day ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~ Quote Link to comment Share on other sites More sharing options...
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