Hearing Impaired Children

Bianca - posted on 03/28/2012

Hi Laura!

Yes my 18 mo old baby boy was diagnosed with Sensori-Neural Hearing Loss when he was 2 mos old. He is profoundly deaf and received his first cochlear implant at 12 mos old. He has speech/auditory training therapy with ECI weekly and also with a private therapist- so twice a week and he is doing really well. When my husband and I first found out we were shocked and extremely sad over the diagnosis. I couldn't believe I could ever e the case with one of our children. Let me tell you, after all of the therapybad support from HOUSTON EAR RESEARH FOUNDATION I am very relieved. I too felt like no one understood except my husband and I do still feel that way at times- we sort of bond over it bc we love our baby and other relatives don't really understand all we go thru (although they are supportive). Now I don't see it as anything wrong bc he is happy and learning. We are a little sad bc he was just diagnosed with mild hypotonia but we are glad he is healthy and ok. Circle of moms is such a great place bc so many mothers can related to each other- good luck and feel free to ask any questions/chat :)

Kelly - posted on 03/26/2012

hi there my 6 year old daughter has just been told that she needs hearing aids!!!,

After many years of fighting and meetings ive finally got some where.

I just wanted to know what to know what happens now as were waiting for a letter from the audio people,what to aspect as in the treatment and what happens to her, she quite a nervous child and im hoping to put her mind at ease

thank you kelly

Michele - posted on 10/30/2009

hi Joanne, my name is Michele and if you'd like you can add me to your friends list ! i have a son that has bone conduction hearing aid . Also like you i have really no one that understands what i go through with him on a daily baises. all my friends have seem to have forgotten who i was when he was born with all his defects hope to chat with you soon.

Michele - posted on 10/30/2009

hi ! my son josh was born deaf also with a bone conduction loss on his right side and a nerve loss on his left ! We had tried the huggy headband for two years and he would never wear it , the we switched to the air conduction aid the helped for about 3 years than stopped doing anything for him now he wears a bone conduction aid that is surgical implanted into his skull with titanium rods it's amazing how well he responds to everything , he goes to a public school right now but they have a very well trained staff for sign language and a deaf and hard of hearing teacher that is wounderfull . we get a lot of stares and kids asking thier parents in whispers what is that on his head and when i do hear them i just politely say it's a hearing aid and 9 times out of 10 they will applogize for not right out asking about it. but of course we some rude ones too .he also has some speach problems but working on that . yuou can also add me to your friends list

Michelle - posted on 10/23/2009

Hello-

My daughter Sydney was born in 04/09 with a bilateral mod/severe SNHL. She has since been fitted with little purple hearing aids. She seems more responsive with them on. We are anxious to see how things progress as she gets older. We have no idea what caused the loss, she is the first in our family and all tests came back negative for all the common causes. I would love to connect with anyone that is going through a similar experience. It can be rather isolating and hard to find people in the area.

Mollene - posted on 06/18/2009

Hi Laura, As a mother of a hearing impaired son I have tons of advise to offer you. I guess I would need to know where to start! Even though my son is an adult now, I will NEVER ever forgot what it was like. He is a highly successfully very articulate individual. To be perfectly honest, he is amazing!

Marie - posted on 06/18/2009

Quoting Carolyn:

Does anyone else have a child with a conductive hearing loss?

Yes at least thats what they tell me.  My daughter has a what they call mild hearing loss in only her left ear.  She has been tested so many times. They do not know exactly what caused it but they are saying it came from having frequent ear infections as an infant.  Her kindergarten teacher noticed it she also has the same problem.  They did hearing tests a cat scan to see if there was any other damage.  She does not need a hearing aid at this point but she does have an fm system in place in school so it does not keep her from missing anything that the teacher is saying.  Before we moved she had a system that was a pair of head phones that she wore and the teacher wore a portable microphone around her neck.  It made a dramatic change in her work and her confidence.  Where we are now they have the system in the classroom where the class has speakers in all four corners of the class and the teacher wears a portable mic for that as well.  I did not realize how many children have this problem but the dr told it there were quite a few.  So good luck I hope this helps.

Julie - posted on 06/11/2009

You know the cutest thing now, my little girl makes pretend Hearing aids and puts them on her teddy bears. A hearing impaired adult told me that they can feel quite uncomfortable to wear in any case, especially when the ear molds are new. she likened it to new shoes.

Natasha - posted on 06/11/2009

When my son was about 4 months old we were told he had mild to moderate hearing loss in both ears. We had to have him tested because he has Down Syndrome. He finally got his hearing aids just after his first birthday. But he hates them and throws temper tantrums when ever we put them in. Plus because the cartilage is so soft and he has narrow ear canals they don't fit right and fall out from the slightest movement. My family whispers to him all the time even tho they know he cant hear it. I'm constantly reminding them to speak up.

Mary - posted on 06/11/2009

My son who is 8 also has a hearing problem. His is the fact he has lost the ability to hear high frequency levels. So planes, trains,any industrial work he can barely hear or none at all. His Kindergarten teacher noticed it and was concerned so we had him tested. He was able to teach his self to read lips. We never knew he had a problem w/ hearing b/c he talked just fined. His 1st grade teacher thought it was wrong that he relied on lip reading so we had alot of problems w/ her. He does wear hearing aids now and they help about 50 % of the time. It can be a long process but we were lucky in that my son was incolved in the process all the way. He got to pick out his own colors for his hearing aids. He is the only one in his class that has them but he has learned to explain it to his friends and classmates why he needs them. Just hang in there he will be okay if you make it known to him that it isn't a disability so to speak but makes him special.

Julie - posted on 06/10/2009

Hello, my daughter has severe/ profoud hearing loss. She is now 11 years old. She wears an hearing aid on the one side and the other side nothing as she is completely deaf on that side. She requires ASl to be able to communicate although her speech is coming along nicely now. the challenge is teaching her to read. We have private (Deaf) reading tutor for her on top of her regualr schooling . I also have private speech therapy sessions for her - as much as I can afford anyway. Please feel free to write to me with any questions you may have.

Lucia - posted on 06/10/2009

Hi my name is Lucia i am new i have a 7 year old son with 2 cochler implants

Nora - posted on 02/18/2009

Hello. I have a teenager who was diagnosed at 2weeks of age and got hearing aides at 4months.... she is now 13.... it is a long and difficult struggle but well worth the effort. You have to keep on top of the schools and medical community to get what is the best for your child-it is all unchartered territory and you are the leader. Even now, my daughter is mainstreamed in public school-making straight A's and we still have our challenges both in school and community.

Lana - posted on 01/18/2009

and my son was born deaf in both ears, he also recieved 2 implants

Lana - posted on 01/18/2009

My son was born deaf, He was born profoundly deaf, He was actually diagnosed at 6 months of age tho and we knew right from the start he couldnt hear becasue he squeeled instead of babble, he didnt respon to me talking to him, he didnt starttle to a loud bang like most babies would... and the list goes on.. He was then at 6 months hooked up with hearing aids and I was told they would work well for him and he wouldnt have deaf speech, but I didnt see an improvement at all with the hearing aids, nothing changed, so my sons teacher from the school of deaf that comes to your house to teach you how to work with them told me about cochlear implants, and right away I went on the website for the sick kids hospital in toronto and refered him myself to get the implants done.. it was quite a process but he was implants at 11 months old, and was actually on televison on the show called the nature of things as one part of there show... The cochlear implants are working great for him now and he babbles and talks now hes like a toddler and a baby at the same time... Hes now going to be 3 on june 11th. But sometimes hes so loud and talks so much you cant get him to be quiet, and we never thought that his hearing loss was genetic because hes the only one besides my mom with this hearing loss in our family.. and my moms hearing loss isnt as bad as his and she lost her hearing when she was sick with the measles and before that she had already been talking and after that she had stopped talking and my grandma thought that my mom was ignoring her all the time until she had her hearing tested.

Relena - posted on 01/16/2009

I just finished reading all the comments below. Thank you for sharing. As I type I am holding the tears back to know there are so many more moms with fabulous little guys with a small part of their lives that affect so much more. What an emotional journey this is; and from some of your comments it doesn't end with aides, implants etc. As I said earlier Toby is just 2; he has over 50 (kinda signs - we started signing in October 2007) and about 10 words (which are "deaf sounding" as my sister-in-law pointed out over the holidays - I just laughed (like, duh what do you think it's going to sound like - what he hears!). He finally started saying "mommy" a few weeks ago. Before that "mmm" was for anyone that would give him something he wanted. I have a fairly high-profile job in our community and we are out as a family at least 3 evenings a week. Over the past 6 months either I quit noticing or people are just getting used to him with his aides because I don't get as many questions. Signing in our family is interesting. My dad (HOH since birth in the 1930's never learned sign - he reads lips and then just misses most everything else - of course he didn't do well in school unless he could read the information and take the test and received his first hearing aides in 1975 - just shortly before I was born) he constantly coming up to me and saying "what does this mean" (and waves his hand). My husband doesn't sign very much because he says "in a few months when he's had his aides and starts talking I won't need to sign to him anyway". Although I'm sure that when they are by themselves he's happy Toby will sign "milk, juice, water, no, up, down, hurt, stop, read, tv," etc. Our Child Care Provider is awsome. She took a sign class at the Community College last fall (she has a Master Degree in Physical Education) and signs constantly with Toby. My Mom is registering for sign classes to become a deaf educator (she already has been a High School teacher for 35 years and retired 2 years ago - but she loves to sign with Toby and wants to help other children in her "old age"). My sister and sister-in-law aren't with him too often and practically never alone. Although last weekend my sister learned the difference between "wait" and "stop". And, my in-laws, well let's just say they are Nebraska ranchers who don't have anything wrong with anyone in their family. So it leaves me advocating, learning and dealing with Toby's hearing loss and social, emotional, verbal and educaitonal needs. Although I don't go to Omaha to Boys Town without my husband (I just conviniently plan all of Toby's appointments on Tommy's day off). It has helped him to stay involved. Anyway - thanks again for sharing. There are only 3 kids birth to 18 in our area with hearing loss.

Relena - posted on 01/16/2009

My son turned 2 last Saturday. We officially got a diagnosis on July 3rd last summer and aides shortly after. HOH runs in my family (my dad and my son have almost identical hearing). The funny thing is my dad is having the hardest trouble. He says to his friends "well maybe he'll grow out of it". Toby has a bi-lateral hearing loss severe to profound. He has blue, purple and clear ear tubes / molds and tan Phonac aides. His aides are bigger than his little ears. Toby never passed the state required New Born Hearing Screening and the doc's just kept testing him, until I was so frusterated when he was 10months that I called the Early Development Network. They did the 5 piece developmental test and his scores at that time said he was functioning at an 18month level physically, emotionally, and socially. And, at below 6 months verbally (babbling). So we waited until late last spring to make sure. Then to Boys Town in Omaha - within 5 hours we had a diagnosis and molds made. What a relief. Now it's just living in a small community explaining to other children what "those things" are and explaining to other parents that he is not behind but very much ahead in physical and social aspects. Although we are starting to see more behaviors (he bites himself) when he is frusterated. He is having difficulty expressing his emotions verbally. Any thoughts on how to help him?

Carolyn - posted on 01/15/2009

Does anyone else have a child with a conductive hearing loss?

Lisa - posted on 01/14/2009

I have a 1 1/2 year old who was born with hearing loss in both of his ears. Love to find other mom in the same boat. Anyone in the Dallas area?

Emmie - posted on 01/13/2009

alfie has serve nerve damage in both his ears, his right ear he has no hearing at all, and in his left he has a little, but not enough for him to hear us talking. we were lucky that they found out quite early on as he failed his newborn screening test, and it was a whirlwind after that. so what have doctors decided where your daughter is concerned?

Sue - posted on 01/12/2009

does your daughter just use sign or does she also have a cochlear implant?

Jennifer - posted on 01/12/2009

Hi! My daughter has profound unilateral hearing loss in her right ear. She hears 0% in that ear and 120% in her left ear. Although she wasn't diagnosed at all until age 6, this was since birth, due to nerve damage. She was born 2 weeks early with an ear infection, and has never had one since... Pleasure to meet you, Laura. Looking forward to hearing from you soon.

Emmie - posted on 01/12/2009

thank you, we are quite lucky that they will do both at the same time. one op is bad enough let alone him having to go through two, i don't know how you managed to go through two operations, i'm not looking forward to the waiting around while the op is being performed, but as you say god only gives what you can handle. it's nice to finally talk to people about it and realise that there are people that have been/or going through what you are experiencing, you realise your not alone. take care.

Sue - posted on 01/12/2009

having both ears done at the same time will be such a blessing. my son has bilateral cochlear implants and got them at different time, i wish they would have done them at the same time. and if he gets them by age 2 he will have a great success rate. i know how stressful and strong you have to be. God only gives you what you can handle. if you need someone to talk to or bounce questions off of i'm here as a friend. take care

Emmie - posted on 01/12/2009

no, we are going through the assessment, this is our second meeting with them after this we have another meeting to confirm that we want it all to go ahead and then we meet the surgeon and then we get a date, so next meeting is the end of this month, and then we got to wait for the next appointment to come out. this bit the waiting for a date is stressful, when the op comes along i will be bold.lol.

Joanne - posted on 01/12/2009

We were worried sick before and even more through the operation. The nurses and doctors are so nice though tell u everything at every step. Finlay only had one ear done so operation was 2 hours. The surgeon was great! When its over you jus think what was i worried about :) but natural to worry when in that situation. Waiting for the operation to end is the most emotional part.  Bless him having both ears done that is brill. Finlay is at Nottingham. We live in Yorkshire, they are going to see if this one works out fine, obviously if not hed probably have to have a second one. We were waiting ages for the funding at Nottingham had to wait a year. But hes doing fine, time will tell hey lol. Alfie will be fine. Its better when they are younger as they cant worry as they dont know what is happening. When he woke from the op he was just sickie, had some medicine, drink and toast. Went to sleep. when he woke the next morning he was back to himself! u wouldnt think hed had anything done! he healed up nice to.Have you got a set date for the operation ?

Emmie - posted on 01/12/2009

we are under great ormond street, and they want to do it before his 2nd birthday which is in august, did finlay have both ears done together, we've been told that alfie wil have to have both done and we are looking at 4-6hr op, how did you get through that part of it without going mad with worry, that is the part i'm dreading the most waiting for him to come out of theatre.

Joanne - posted on 01/11/2009

its a very emotional thing to go through, but it is so worth it in the end. The operation is the worst bit but they are so nice at the hospital and finlay was up and about after a few hours did not bother him 1 bit. The switch on is so exciting. Things can only get better

Emmie - posted on 01/11/2009

i wouldnt change alfie, he greets me with the biggest smile ever in the morning and everything that we go through with alfie is a learning curve for ourselves, our next step together will be the cochlear implant, and that i think will be a very emotional journey, but a nescessary one.

Joanne - posted on 01/11/2009

my son has just had a cochlear implant, we are going back next week and then again in a few weeks. Just from the first switch on he could hear us shout his name. He is gradually getting used to all the noises and learning alot. He has taken to it quite naturally and cannot do without it. Even puts it on when he is getting dressed. The thing ive noticed with Finlay is routine,routine,routine. Makes him feel safe. When we go anywhere and he speaks in sign language people are amazed. He can only speak a few words so when he does speak outdoors people do wonder why he talks that way. Alot of people do not understand any disabilities till they know someone personally with one. His sign language is getting better by the day especially now with the implant. This has given him so much more confidence and personality! and to think he wasnt allowed one this time 2 years back.... was borderline to the required deafness bless him. I think hes a brill little lad and everyone loves him to bits from the minute they meet him. Noone forgets finlaybobs. I have only just come to terms with everything thing, the hearing loss, the aids then the more hearing loss then implant. Has been a long process but we got there! Wouldnt swap him back if i could.

Emmie - posted on 01/11/2009

hi our 1 yr old son alfie was diagnosed profoundly deaf at quite early on his life, and i myself found it quite hard to deal with at the beginning, and when i saw his first set of hearing aids i point blank refused to use them because of other people staring, i think i blamed myself for his hearing loss, but i ave lost count of the times i ave at to explain deafness to family members, one thought is hearing would come back gradually over time. we made a big thing of alfies hearing aides the audiologist said we could ave the moulds clear so people wouldnt notice but we decided that we'd ave them done in west ham colours, so one is burgandy and one is blue, we are not ashamed of alfie bein deaf, or the fact that we have to communicate with him in a different way, we found getting pictures of the inside of the ear and then showng family members exactly the way everything works they begun to understand, i dont think family is the hardest part it's everyday public, when they know that your child has an impairment of any kind, they tend to say i'm so sorry, and the poor child, and you ave to walk away and laugh and think if you could see my baby at home and see that he is happy and content you wouldnt feel sorry for him, its the people that can't open their minds enough, that i feel sorry for. alfie attends a special needs nursery and this year will be put down for a schoool that caters for hard of hearing children. i think what everyone as to realise that life will not stop for our children cause one of their senses are damaged, it will carry on the same. alfie has started the cochlear implant assessment, so we are waiting to see what happens there. i make a joke if people can hear his hearing aides, i just say he his whistling again and they can't say much after that. it would be nice to be added to your friends list as there are no support groups really and it's nice to talk to people that ave an understanding of hearing loss. emma.

Connie - posted on 01/09/2009

I also have a deaf son, the first for our family. His is related to adverse effects of meds given during his hospital stay after birth. He had to be delivered at 27 weeks gestation due to complications in my pregnancy. Anyway he is now 11, we found out he had hearing loss at 1 years old, tried hearing aides for a couple of years, but no benefit. he has had a cochlear now. great progress with hearing, but not much speech. He makes alot of noise now that sometimes embarrasses my family and honestly me too at times. He is picking up sign language well and is the main means of communication between us. He has a older and younger sister that are hearing. My family now has a niece that is hard of hearing and now too has a cochlear. She too was born hearing, but lost if due to meds during complications from her birth.

Sue - posted on 01/09/2009

Hello Laura, my name is Sue I have a wonderful 5yr.old son that was born profoundly deaf. He got his first cochlear implant at age 13months and it was turned on when he was 16months. The first few months were so difficult I didn't know how I was ever going to get through it. Last summer he got another implant for his left ear and his speech is great. It's his cognitive development that I worry about, he is still behind his peers. His docotors say is real age is 3.5 or 4 from missing that early language developement. I understand your frustrations, excitement for how far you've come, and fear for the future. You can always add me to your friends, it's great to have people you can relate to.  Take care.

Carolyn - posted on 11/26/2008

My son Cole is now 6 and he has a severe hearing loss in his left ear and a mild hearing loss in his right ear. His hearing loss is due to a birth defect. He has very small ear canals and he wears a bone conduction hearing aid. I can remember feeling so frustrated when he was little and no one else could understand him. I was worried because I felt that even as a nurse I would not be able to help him keep up with school. Most sources I read said that if he didn't get help with his speech he would fall behind in his schoolwork by 3rd grade. I was not able to get into speech until he was 3, they kept telling me he "wasn't far enough behind" which I think is BS. If most research shows they will fall behind, why wait? So I was persistent, in South Dakota kids have to fall behind in 2 areas in order to qualify for early childhood education. Luckily I did not ever tack cole how to use scissors, so he fell behind with his fine motor skills. He is now in Kindergarten and getting top grades!! He has such a wonderful personality and al the kids love him. He does have an FM system that he uses at school. The outreach mentor that I have through the School for the Deaf here is wonderful and answers all questions. I would be happy to send any of yours her way...

Laura - posted on 11/25/2008

Thanks for replying!

My son has moderate bilateral hearing loss. He is learning some sign to help with communication skills. We noticed at around a year old he wasn't picking up any speech, and not walking. Though his normal pediatric practice didn't pick it up, an ENT saw that he had lots of fluid in his ears. Though my son was born with a mild hearing loss, the fluid damaged his ears more and pushed him to moderate. He never had an "ear infection" or acted like there was a problem. But once tubes were in he walked and was so happy to hear everything. It has taken us a long time to get used to his hearing aids. He is just now at the point where he'll wear them most of the day. But since then his speech has just taken off. He is trying so hard to learn more!

Joanne - posted on 11/25/2008

if you want to add me to your friends list then i dont mind, i dont know anyone else with a deaf child so would be nice to have someone to talk to who understands.

Joanne - posted on 11/25/2008

hi, our son Finlay is 5, he was diagnosed profoundly deaf at 2, because he wasnt talking like any other boy at at that age they did tests and discovered the deafness, he got chicken pox at 4 and is now severley deaf, wears hearing aids and they dont help one bit, he is goin through the process of a cochleasr implant, switch on mon 1 dec! yay cant wait been such a long journey.We use sign language to communicate as he still cant talk. He actually goes to a school specially improved to cater for deaf children. He loves it, it is mixed school, normal kids normal teacher yet the teacher wears a microphone and there r speakers around each classroom, he mixes with other children and other deaf children. Only difference is he gets taken for seperate classes sometimes. I think it is wonderfull how he can sign, sometimes even i dont understand what he is sayin! lol. My family still struggle to understand the hearing aids and the speech impairment, only me who can sign. they do get use to it. I just say my son is a happy boy if anyone stares or has a problem, then they should deal with it not me. my parents always ask if im growing his hair it drives me mad, y should i! shouldnt have to hide his disability.it takes alot of strength to bring up a deaf child but i just think my son doesnt know any different. Family do come round eventually they just dont understand. I have explained things to mine over and over now they just leave it to me.
I hope this helps as we went through the same thing, I now dont even notice fins hearing aids.