Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 In a message dated 2/14/2006 4:59:22 P.M. Eastern Standard Time, say_712@... writes: I feel so frusterated about this. Everything else with the baby is perfectly normal. Stacie, As you can see, you've come to the right place. My son lost his hearing post-lingually so I have no experience with newborn screening (it didn't exist then) or the EI programs. But from what I've learned here, those programs can be wonderful. The thing to remember is that the hearing loss is a tough thing to wrap your mind around. No matter what age your child is when you get the news that they're D/HOH (deaf/ hard of hearing), you worry about what the future will hold. I know I wanted answers fast, I was afraid about losing time -- we'd already lost so much. But the truth was that it took time for me to learn about hearing loss and to learn to help our son. That was hard. You're going to learn an awful lot in these next few months. It will seem overwhelming at times. The vocabulary and acronyms can be impossible to keep straight. But after a little while you'll fell like you knew it all along. As things come up, come here and ask questions. As you can see already, people here are very willing to help. We've all been at the beginning and have no problem defining words, translating doctor-speak or just being virtual shoulders to cry on. Everyone here is probably tired of hearing me say this to new people, but here it is again. At the beginning, I use to stand in my son's doorway, in the middle of the night, watching him sleep and crying. I was simply overwhelmed. I was doing everything I could think of and was still sure it wasn't enough. But it was. It was the best I could do at the time and it was enough. Like and have already indicated in their posts, the future can hold anything and everything for your son. Our son, Ian, is now 15 and he's delightful. I just adore him like any biased mother does (grin). He's a sophomore in our local high school. He wears bright blue hearing aids and has no trouble explaining about them to total strangers. When people forget to face him to talk, he makes a joke about talking " to Deaf Boy " in a loud voice, as though Deaf Boy is a superhero. Ian has a deteriorating condition, so we're now learning to sign (American Sign Language -- which is only one form of sign language. There are others.). He's faster and better at it than the rest of us, which is what you'd expect I guess. He is also a Boy Scout -- almost an Eagle scout. He loves camping, hiking, canoeing, kayaking, rock climbing ... anything that takes him outdoors. He spent a week on a sail boat in Florida -- a " high adventure scout camp " ... without his aids! He doesn't let his hearing loss limit him, even if it does annoy him occasionally. So ... take a deep breathe. It is going to be okay. And the fact that you've come seeking information means that you're doing everything you can. (grin) Ask questions ... we'll do our best to answer them or help you find someplace to find the answers. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Welcome to everyone who's new! I'm glad you found us... Stacie - neither of my boys were lucky enough to be diagnosed as babies. My older son Tom (who is now 13 years old) was diagnosed when he was 3-1/2; my younger son Sam is 11 and was diagnosed at 15 months thanks to his big brother! I remember being sad, angry, upset - you name it. My boys now are doing well. They both attend our town's public schools and are both fully mainstreamed. Tom is in 7th grade and just auditioned for the school play (he doesn't think he'll get a part because he said he's too short! - note the hearing loss doesn't enter in at all). He'll be testing for his black belt in Taekwondo March 3 and is a metalsmither as well. Sam's in 5th grade and is Mr. Jock - basketball, baseball, soccer, taekwondo (he'll be testing for his black belt in August). Sam also is in band - he plays the sax - and in chorus. Tom has a severe/profound hearing loss and was recently implanted in Nov. 2005; Sam's hearing loss is profound and he currently wears two hearing aids. My boys are as different as night and day but normal guys who just don't hear well. Tom's adolescent ups and downs are driving me nuts - I suspect they would if he could hear LOL! I was devastated when I found out first one then both my children couldn't hear - now 10 years later, it's part of who they are. You'll get to that with your little guy too... Ask lots of questions! Take care Barbara > In a message dated 2/14/2006 4:59:22 P.M. Eastern Standard Time, > say_712@... writes: > > I feel so frusterated about this. Everything else with > the baby is perfectly normal. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Stacie, I have a 14 month old who failed her newborn hearing screening and we went through the same thing as you. She was predicted by the ABR to have a moderate to severe loss (it does a range prediction at each frequency). She has been tested repeatedly and her hearing is actually turning out to be more at the moderate range than severe. Be happy that you have an audiologist that wants to do continued testing; it is much better to be thorough than to be surprised later on. She has been wearing hearing aids since she was about the age of your child. The day she got her aids was amazing. A huge difference.... We use the early childhood intervention for speech therapy, which involves a speech therapist coming to our home to work with our daughter. I get ideas each time and goals for the month of what to work on with her. Currently, our daughter is saying " ma ma " , " da dee " , " boo " , " da (for that) " , " moo (for cow) " , " baa (for sheep) " as well as signing more signs than I can count. She probably won't " need " sign as a primary way to communicate, but it certainly helps. She can communicate that she understands my spoken words by signing things to me that a normally hearing child would not be able to tell me at this age. If you want to ask any questions to me personally, feel free. This is a great list to post to, or even just lurk on. I often pick up things I had not thought of just by reading other questions and answers. in Manassas, VA > Hi, > My name is Stacie. I have a 3 month old who, it seems is going to be > hard of hearing. He failed his newborn hearing screen (and several > more), then we went to an audiologist who did an ABR on him. That > indicated that he has at least a mild hearing impairment in one ear and > at least moderate in the other. Can anyone tell me what that's going > to mean in terms of him learning to communicate? I'm planning to get > him involved in an early childhood intervention program fairly > quickly. The audiologist and the ENT keep wanting him to come back > every few weeks to retest his hearing, though nothing has changed at > all. The ENT saw him at 6 weeks and thought maybe he had fluid on his > ear (left). At 10 weeks there was no more fluid but no improvement in > his hearing. I feel so frusterated about this. Everything else with > the baby is perfectly normal. > > > > > > 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 February 15, 2006 Report Share Posted February 15, 2006 Hi Stacie – welcome to the group! My name is and my son , who just turned 2, failed his newborn screening as well. He also has a mild/moderate loss sensori- neural hearing loss. I understand exactly what you are going through, and I know how hard and confusing it must be. Believe me, your son will be fine. You asked about him learning to communicate… With a mild/moderate loss, our sons have a lot of residual hearing, and will get the most benefit from hearing aids. You are right to try to get him into an early intervention program. My son got his hearing aids when he was 6 months old, but wasn't wearing them consistently until he was about a year. Those first 6 months were such a struggle. As soon as I put them in, he tugged them out and started chewing on them! All my friends knew that he had hearing aids, and I always felt guilty when they asked me why he wasn't wearing them, knowing how much he needed them. Then, it finally clicked for him, and now he wears them all day long (and it doesn't seem like that first year of not wearing them hurt at all). He has also received speech therapy from the beginning. He is now talking up a storm!! It's unbelievable how far he's come. He's a typical 2 year old. He'll be starting a regular toddler preschool program in the fall. I'm still learning all the in and outs of what that will entail, but we still have a while for that. Just remember, it will get better, and he'll turn out fine! Mom of Miri – 7 – hearing Abigail – 4 ½ - hearing – 2 – mild/moderate SNHL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Hi Stacie, It's going to be ok. With the help of early intervention, your son's hearing loss will not prevent him from developing language along with his typical hearing peers. When our daughter was identified with a mild/moderate hearing loss at 5 weeks old, my husband and I were devastated. The hard part about our daughter's hearing loss was that without her hearing aids on, (this was especially true when she was an infant), she responded to sound just as a full hearing child would respond. She turned to voices, woke to the sound of the dog barking and phone ringing, etc. However, that said we have worked hard to make sure that our daughter wears her hearing aids during her waking hours. Today at 20 months, our daughter's language is exploding, exceeding the established norms for her age group. Although some audis will not bother to do behavioral testing on toddlers between the ages of 20 to 24 months (as toddlers can be so difficult), behavioral testing is possible and important to do from around 6 months on. Making sure that your child's hearing aids are set appropriately is very important. I always say the best advice given to me was to trust my " mommy gut. " Ask all the questions you want, and never be afraid to find another specialist for a second, third or even forth opinion. Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 >and it doesn't seem like that first year of not wearing them hurt at all). " Hi , I have heard the same thing from other parents with HOH kids in the mild to moderate range. In fact, on the Aussie listserv, I recall the parent of two mild/moderate girls not battling to aid her second daughter (until she was 13 months old) due to her experiences with her first HOH daughter. Again, ZERO language delays. Since there can be so much guilt for parents trying to keep HA on babies, I think it is helpful to share our stories with eachother. So many of the moms I have spoken with are always so sheepish about admitting that their mild/mod infants rarely if ever wear/wore their HA the first year. Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 I would like to 'ditto' this. My daughter RARELY wore her aids for the first year of her life. It was actually more like 15 months before they were in more consistently. We beat ourselves up over it but it was nearly impossible to keep them in. She is 22 months now and wears them more but still not all day. She too has had no language delays and in fact is ahead of her peers. Go figure... Alison mom to Lucy (mild/mod) --- jbkdarby wrote: > > >and it doesn't seem like that first year of not > wearing them hurt > at all). " > > Hi , > I have heard the same thing from other parents with > HOH kids in the > mild to moderate range. In fact, on the Aussie > listserv, I recall > the parent of two mild/moderate girls not battling > to aid her second > daughter (until she was 13 months old) due to her > experiences with > her first HOH daughter. Again, ZERO language delays. > > > Since there can be so much guilt for parents trying > to keep HA on > babies, I think it is helpful to share our stories > with eachother. > So many of the moms I have spoken with are always so > sheepish about > admitting that their mild/mod infants rarely if ever > wear/wore their > HA the first year. > > Best, > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 I would like to 'ditto' this. My daughter RARELY wore her aids for the first year of her life. It was actually more like 15 months before they were in more consistently. We beat ourselves up over it but it was nearly impossible to keep them in. She is 22 months now and wears them more but still not all day. She too has had no language delays and in fact is ahead of her peers. Go figure... Alison mom to Lucy (mild/mod) --- jbkdarby wrote: > > >and it doesn't seem like that first year of not > wearing them hurt > at all). " > > Hi , > I have heard the same thing from other parents with > HOH kids in the > mild to moderate range. In fact, on the Aussie > listserv, I recall > the parent of two mild/moderate girls not battling > to aid her second > daughter (until she was 13 months old) due to her > experiences with > her first HOH daughter. Again, ZERO language delays. > > > Since there can be so much guilt for parents trying > to keep HA on > babies, I think it is helpful to share our stories > with eachother. > So many of the moms I have spoken with are always so > sheepish about > admitting that their mild/mod infants rarely if ever > wear/wore their > HA the first year. > > Best, > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 I would like to 'ditto' this. My daughter RARELY wore her aids for the first year of her life. It was actually more like 15 months before they were in more consistently. We beat ourselves up over it but it was nearly impossible to keep them in. She is 22 months now and wears them more but still not all day. She too has had no language delays and in fact is ahead of her peers. Go figure... Alison mom to Lucy (mild/mod) --- jbkdarby wrote: > > >and it doesn't seem like that first year of not > wearing them hurt > at all). " > > Hi , > I have heard the same thing from other parents with > HOH kids in the > mild to moderate range. In fact, on the Aussie > listserv, I recall > the parent of two mild/moderate girls not battling > to aid her second > daughter (until she was 13 months old) due to her > experiences with > her first HOH daughter. Again, ZERO language delays. > > > Since there can be so much guilt for parents trying > to keep HA on > babies, I think it is helpful to share our stories > with eachother. > So many of the moms I have spoken with are always so > sheepish about > admitting that their mild/mod infants rarely if ever > wear/wore their > HA the first year. > > Best, > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 >> Since there can be so much guilt for parents trying to keep HA on > babies, I think it is helpful to share our stories with eachother. > So many of the moms I have spoken with are always so sheepish about > admitting that their mild/mod infants rarely if ever wear/wore their > HA the first year. > > Best, > > Thanks so much! Good to know I really did no harm to him by not pushing him into it!! - mom of - Miri - 7 - hearing Abigail - 4 1/2 - hearing - 2 - mild/moderate SNHL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 >> Since there can be so much guilt for parents trying to keep HA on > babies, I think it is helpful to share our stories with eachother. > So many of the moms I have spoken with are always so sheepish about > admitting that their mild/mod infants rarely if ever wear/wore their > HA the first year. > > Best, > > Thanks so much! Good to know I really did no harm to him by not pushing him into it!! - mom of - Miri - 7 - hearing Abigail - 4 1/2 - hearing - 2 - mild/moderate SNHL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 >> Since there can be so much guilt for parents trying to keep HA on > babies, I think it is helpful to share our stories with eachother. > So many of the moms I have spoken with are always so sheepish about > admitting that their mild/mod infants rarely if ever wear/wore their > HA the first year. > > Best, > > Thanks so much! Good to know I really did no harm to him by not pushing him into it!! - mom of - Miri - 7 - hearing Abigail - 4 1/2 - hearing - 2 - mild/moderate SNHL Quote Link to comment Share on other sites More sharing options...
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