My name is Monica. My 5 year old, Emma got diagnosed with moderate-severe hearing loss in her left ear. They said that it was permanant nerve damage that she had had since birth. Aslo she has mild-moderate high tone hearing loss in her right ear. She had surgery at the end of May to put tubes in both ears, remove her toncils and her adenoids. She is getting a hearing aid for her left ear and a FM Transmitter for her right ear to wear during school. I am still in shock that all of this has happened so fast. I am still trying to wrap my head around it. I just don't understand how no one caught it until now? I feel like a bad mom for not knowing and being able to get her help earlier. Now because of it she has speech problems. We didn't think much about her speech because all of her cousins have speech problems too (not medically caused) so we just thought she was normal. All of this is moving too fast and I am trying to really understand what is going on. And my family is not very supportive of having a now "special needs" child in the family. So I now feel like I am going at this alone. So any support or understanding would be a godsent.
Angel grins and baby giggles, that's what makes us smile.
First, don't beat yourself up about what is already past. Just go from here.
Since you said she had speech problems, has that been being dealt with yet? I would think if she was getting speech therapy a hearing test would have been part of the evaluation to start the therapy.
One thing I would suggest is that the other family members who have kids with speech issues get their hearing checked as well. I know that may be hard to suggest, but you never know if your daughter's hearing loss is genetic and that some of these other family members have an undiagnosed problem as well.
I am sorry your family is not very supportive. People react all different ways to unexpected challenges.
Feel free to ask any questions you have as they come up or just vent.
Also, I suggest checking out http://listen-up.org They have lots of helpful information as well as a very active email group of moms and other family members with kids with hearing loss.
Thank you for the website. We are not sure if it is genetic or not. She is getting her aids on July 29th and she has her speech evaluation August 18th. She is really being a trooper through everything although I'm not sure she truely knows or understands what is going on. But she's at least game for anything. She has not complained through one bit of it.
Angel grins and baby giggles, that's what makes us smile.
If you can, try to have another family member with you when she gets the aids. It can be overwhelming for mom and child and then you miss out on some of the important information the audiologist gives.
My daughter got her aids when she was 11 weeks old and you should have seen the way she kept whipping her head around to people's voices once the aids were on; I was really overwhelmed.
Since she is older than my daughter was, your daughter might get worn out by the aids quickly at first. It is okay to let her have breaks from them at first and build up the amount of time she wears them, but if she wants them all the time, then that is great.
I will try to keep thinking of things that might help you out....
Thankfully I will have a sitter for my youngest and my boyfriend (who is also my best friend of 18years) is going with me to the appointment. I am truely greatfull for your advice and support. Thank you. I kind of know what you mean with the new sounds. When Emma got her tubes in and the fluid in her right ear drained, everything seemed a lot louder to her. She was always asking me to turn down the music in the car or on the TV or telling me I talked to loud (LOL). She was very excited to hear a little better, so I am excited to see how she reacts with help in the left ear. And once again, thank you.
Angel grins and baby giggles, that's what makes us smile.
Well, I just got a call from the doctor and they said that they aren't going to put a hearing aid on her but instead they are going to put an FM transmitter in both ears. That will end up working out better too.
Angel grins and baby giggles, that's what makes us smile.
Did they give a reason for not aiding the worse ear? If the fm system will only be used at school, then she is not getting help in the rest of her day. I know some audiologists are against aiding just one ear, but I have spoken with a few parents of kids who have just one ear aided and they thought it was a good idea.
I would try to get a clear explanation of why they don't want to give her a hearing aid for her worse ear, especially since her good ear is not in perfect shape itself. My daughter has a moderately severe loss in both ears and she cannot hear most speech sounds without her hearing aids on. I would imagine trying to use one ear to understand the missing speech sounds would be difficult, especially sounds like "s". It will also be more difficult to hear the letter sounds in isolation when she is learning them, which may make learning to read more difficult without hearing them clearly.
They said that with the type of hearing loss she has and the tones she is missing, that a FM system might work better. We are trying this first and if it doesn't work or if we encounter any problems then they are going to do a hearing aid. They are afraid that if they put an aid in then it will block the tones that she CAN hear. They also told me to us the FM system anywhere where I think that she might need to hear me more directly. But what I am worried about is that there is a distance limit on the FM system. So what if the teacher is walking around the room? Field trip? What good is it going to do if it doesn't work past a certain distance? GRRRR!!!!!!
Angel grins and baby giggles, that's what makes us smile.
You mentioned a high tone loss (which I am assuming means high frequency) in her better ear but did not mention what the loss was in the worse ear, whether it is high frequency or something else. Do you know whether the worse ear is a high frequency loss or something else like reverse slope? I am not sure how a hearing aid will block the tones she hears, but I am not an expert. I do know that there are hearing aids that are called "open fit" aids that I think are meant for issues like that.
I really don't understand how an fm system is better than hearing aids, though. The fm system will work a pretty far distance, though. She will be able to hear the teacher even if the teacher forgets to take the fm off and goes out in the hallway to talk with someone else. We used an fm at the zoo and I could tell that it worked a good distance away because I left it on when I went off to throw something away and talked to my daughter (who was with her dad) from way far away and saw her turn to look at where I said to look for me.
The said that it is a high frequency loss in her left ear (the worse ear) and that they were thinking about doing an open fit but decided against it. Why? I'm really not sure. But they said that they wanted to try this first. I am just really worried about the school's lack of cooperation. If it gets too bad I can go to the superintendent and switch schools because there are several elementary schools around us. But I don't want her to be able to hear more clearly sometimes and not at others. So we are still in debt back in worth on which one to do. They said to try the FM system first and if that doesn't work as well then we will do a hearing aid. Thank you for the info about the FM system because I was worried about the distance even if we are out somewhere very crowded if she would still be able to hear me a bit away. She is 5 and she likes to have her freedom to walk a bit infront of me as long as I can still see her and she can see me, I let her go (definately within reason). And this makes me feel a little better that she would still be able to hear me.
Angel grins and baby giggles, that's what makes us smile.
I would still push for the hearing aids. I truly do not understand not getting hearing aids. High frequency losses are common and what most people have and most people get hearing aids for. There are open fit ear molds that allow the lower frequencies to be heard more naturally if that is an issue.
Is the audiologist someone who has experience with children? Is the audiologist contracted through the school system? I would definitely consider getting a second opinion; I asked my email list for parents with kids with hearing loss some questions about what your audiologist said and none of the ones who responded thought what your audiologist was saying made sense based upon her loss. An fm system is only going to allow your daughter to hear the teacher or whoever is wearing it, not other people and things.
You will need to have an Individualized Education Plan set up with the school system. If they do not follow it they will be violating federal law. Don't sign it unless you are absolutely sure that you are getting what your daughter needs. If need be, wait to sign until you have a few days to process whatever is said at the meeting.
Hello.. I am new too.
- emmaandajsmommy
on Jul. 1, 2009 at 2:16 PM