just found out... so many questions

Stacey - posted on 11/22/2009

hello hunni i am sorry to hear that your son is hard of hearing. as a mother of a daughter who is profoundly deaf i know that it is heart breaking. my daughter was only diagnosed when she was 2 years old she will be six on wednesday. she was given a cochlear implant just over 2 years ago and she is doing ok she is not where they hoped she would be but like you yourself said there is so much more that could be wrong. i think hearing aids should help your son but just make sure you do not let the doctors palm you off and not listen to you as you are his mother and you know him best. they told me i was narotic for two years and i think that if they had just listened to me in the 1st place then my little angel would not be profoundly deaf as i think she had some hearing but that it deteriated over time. sorry for going on i just want to make sure that you know to believe in yourself as a mum and that you know what is best for your son. i hope that hearing aids help your son but if at any point you get offered a cochlear i really reccomend it as they are great xxxx. i wish you and your son all the best please let me know how he does in the future. also i think even if your son does hear better with aids you should learn sign language as it is a great way to communicate xx good luck xx

Catherine - posted on 10/03/2009

my daughter has severe bilateral hearing loss and wears two hearing aids, she was diagnosed at 18mths. It was a very hard time, especially as I wasn't sure what was going on, what questions I should be asking etc. I think the best thing to do is ask whatever question you think you need to ask, even if you think it is a silly question, the specialist/doctor won't think so and it may put some of your concerns at rest. Courtney is now 6 years old and goes to a satellite class in a mainstream school and is doing really well. She is mixed in with profoundly deaf and children with CI's but is coming forward in leaps and bounds.

From the outset I wanted her to have the best of both worlds, the hearing world and the impaired world, and to this end she uses some NZSL but majority of time we are getting her to talk and sometimes, you would be hard pressed to realise she is impaired. Just remember that your son can have the best of both worlds and needs to learn to live in both, ASL is good but we found using it as just a tool to support our daughter's talking.

Melinda - posted on 09/29/2009

My son is HOH. He got his first set of hearing aids at the age of 10 weeks. I remember how overwhelming it was at the begining. He is 11 1/2 now and doing awesome in school. Straight A student. Early intervention is very important. We taught him ASL as well as moving forward with hearing aids and speech therapy. He rarely uses any ASL now, he really only remembers a few words, but when he was a toddler he was pretty fluent. His loss is mod-severe. His speech is very good, honestly if you didn't see his aids you wouldn't know he has a loss. There really wasn't a lot out on the internet 11 yrs ago. Get a good ped. audiologist it is very important. As far as the FM system there is a little piece that goes on the end of the hearing aid that is a reciever and the teacher will wear a microphone. There is type of hearing aid that has the FM reciever built in. It is a good elementary school aid. We have an FM system for home use also. I don't use it very often anymore, but used it often when he was smaller. It was good for use at the playground or in places that were crowded and I was worried about safety. Although you really won't need that for a bit either. Your son has too much hearing to even consider an implant. Once you get the hearing aids you will want to transistion him to wearing them. The hardest part at that age is them taking them off and using them as a teething device. I thought I would have no hair by the time he turned one. I knew NO ONE else in my boat so that made it difficult. Anything I can do to help or answer questions feel free to ask away.

Kimberly - posted on 09/27/2009

Romina,



I know this will be a difficult time for your family. It is always important to talk to your doctor, audiologist, and specialist about the questions that you have, they can give you their expert advice.

My daughter was diagnosed with a severe to profound loss bilaterally when she was 4. We think she lost her hearing around 3 or 3.5, but we are not sure. It was hard to take the news and even harder to explain it to her. But children seem to understand things alot easier than us. She wore her hearing aids every minute of every day and she had a FM system while at school (it is a piece connected to the hearing aid and a microphone attached to the teacher, it makes it sound like the teacher is always right there next to them). The hearing aids were not helping her as much as they should. We could tell b/c her speech still wasn't improving and she wouldn't always respond to someone else talking.



In May of 2009 she was bilaterally implanted with CI's. It was a difficult choice to have your child go through a surgery like that, but a choice that I am happy that our family made for her. She just had a hearing test done and is now experiencing only a mild loss (she has been activated for 3 months).



I would remind you to talk to your doctors and audiologist but also rely on family to help you through this journey.

Julia - posted on 09/06/2009

My main piece of advice is ALWAYS ask you doctors/audiologist questions. When he goes to school, make sure that everyone involed in his educational process understands that you will be there to make sure he is treated fairly. That is where I am at now with my son. You are your childs primary advocate so find out everything you can about what will be going on with his care. My son also has moderate bilateral hearing loss. He is 4 and received his hearing aids this year and they have made such a profound difference. Good luck with your son and keep us updated.



Julia

Janice - posted on 08/28/2009

Hearing loss usually NEVER gets better as a human is unable to re-grow the hair cells in the cochlea. With even a moderate loss everything seems ok because the child is hearing something but what they're hearing isn't pure toned speech! ... when the child turns 2 or 3 and isnt speaking at a typicle rate its due to the child not wearing their hearing aids all waking hours....Its so IMPORTANT to wear the H/A even with a moderate loss if you expect to have a child who speaks clearly and typically...Trust me i kick myself in the butt constantly for not focing my child to wear the H/A especially when he cant say the S sound or the ph or f.

Beth - posted on 08/28/2009

My son was diagnosed with moderate hearing loss back in Dec, he is now 15 months old and doing fine! He does have hearing aids, but very seldomly wears them. With him, he didnt show any difference in hearing if he had them in or not. It also seems that his hearing has gotten better over time, and responds now to stuff he didnt before. He coos and babbles alot now, so I guess that is a good sign. Good luck to you and your little guy!

Janice - posted on 08/26/2009

My daughter has a moderate-severe loss bilaterally....Hearing aids DO NOT clarify any sound they only amplify. This means that ALL sounds are amplified which causes distortion not pure sound. This is where the FM system comes in an HELPS ease background noise like in the car. ..we started using an fm system as soon as our children were good reporters--they could tell us if the H/A were working or there was any static or anything odd going on with the H/A--IFM systems cause static once in a while and the child needs to be able to tell an adult.(so about 3years old) Given early intervention, proper speech therapy (if possible try to get an auditory verbal therapist, they deal with children who have hearing loss and teach them to speak, listen and utilize not only the H/A but also the residual hearing ), and appropriate amplification your child should develop speech at a typical rate...You may want to ask for these services through your early intervention team. I also recommend reading IDEA and getting your own copy! This is the law stating what you and your child are entitled to. These services are not cheap and most E/I teams will want to give you the least expensive service they have available and this may mean that the services given to your child may not help meet their specific needs! I hear of many stories where an E/I team puts a child with a mild-moderate hearing loss in a ASL program because its cheaper then putting this child in a auditory oral school or a typical class room with a avt therapist. So look into your options and know the law before your meeting with the E/I team!

Sara - posted on 08/26/2009

My daughter also has a bilateral moderate hearing loss. She wears hearing aids and is doing great with them. Your son wouldn't qualify for a CI with a moderate loss, he would have to have severe-profound loss before they would consider him for a CI. Every child is different and every hearing loss is different. Only time will tell how well he does with hearing aids. Most kids do great. The hearing aids will amplify the sounds that your son doesn't hear well, so when you heard the moderate hearing loss simulation the reason it was muffled was because certain speech sounds were left out...those sounds would be amplified by the hearing aids so your son should be able to hear them more clearly. An FM system is a device that attaches to the hearing aid, the teacher wears a microphone and the sound goes straight from the microphone to your child's hearing aid so background noise isn't as much of a problem (it'll be a long time before you have to worry about FM systems).



As far as the deaf community goes I don't know a lot about that, but your son is not deaf...he is hard of hearing, and I think there is a big difference. Your son can hear, just not as well as you or I. I believe you have to be severe-profound or profound before you are considered deaf. I don't know where hard of hearing people fit into the picture in the deaf community, but I would be very interested if anyone here knows more about this.



It's an interesting journey and there are a lot of questions and concerns you will encounter along the way. Make sure you have a good ENT and audiologist, ask them lots of questions, get your son involved in early intervention as soon as possible. You will be faced with a lot of decisions and a lot of opinions. Make sure you do your own research and talk to people on all sides and make the decision that you think will be best for your child and your family, what works best is different for everyone. And most importantly enjoy that little boy...they only stay babies for so long, and it goes by so fast, so try not to spend too much time worrying about the future and just enjoy him.