update on my 9.5-week old son - now has HA's

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jesse

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Hi everyone. You may remember me from my other post about my then 2-month old son having severe hearing loss.

He got his hearing aids last Friday. My wife and i noticed a change in him right away, but maybe we're nuts?!?! At the hearing aid place he was fussy as the tech was putting the first one in his ear, as soon as the tech turned it on he stopped fussing and started to look around as we spoke. He did the exact same thing with the other ear. He's been laughing, smiling so much more then ever before, he gets startled by noises, and yesterday he had them in during one of his several naps and the dog woke him up when she was barking. To our surprise he even looks in the direction of noises, but not every time. He has a totally different look to his face when we talk to him, it looks like he's listening.

Then we have the downside. The feedback drives me nuts. I have ADD so it really gets to me. He's so squirmy at this age so the molds keep losing their seal. I don't think it bothers my wife as much as it bothers me, which is good because she's with him all day. I can't think of any other downsides to them. But, the positives outweigh the negatives by far.

A few questions now:

Can he hear the feedback?

When the feedback occurs is he able to hear other sounds in that ear?

Any suggestions for keeping the molds in place? (He's going to get new molds made in a few weeks, but until then.)

So far we're happy with them, and we hope that he's actually hearing things clear enough for.... well, you know what for, but i won't go there. :) We have a very long road ahead of us, but this was a great first step.

Since this was mentioned and asked several times in my last post i'll clarify it. In Toronto, Ontario, Canada the government appoints a family worker to work with the child and parents to go over all the resources that are available. There are several schools in Toronto that help HOH children, many programs, workshops, speech therapist, ect. Thankfully i'm living in a city that has the help that we'll need.

Personally i've been having an extremely difficult time recently with everything. I'm just very angry, but i don't know at who or what. I'm going to have to speak to a professional about that because it's started to make me really depressed. :(

Thanks for reading.
 
I am glad to hear your son is doing so well with his new HA's! I can't necessarily understand where you are coming from, not being a parent myself, but I do empathize with your situation. I am in Toronto as well and I am so thankful for the resources available here for me!

It is good that you recognize that you need to speak with someone. It can be a lot to take in at first. I am a respite worker (so I provide releif for parents/guardians of kids with disabilities of all kids) I have seen many parents go through this stage as new diagnoses come up. I promise you that things will get better. It is a long and bumpy journey with any special needs child. I encourage you to seek out the support you need not only on a psychological level but also on a care based level. In ontario, when you have a special needs child you are entitled to funding for respite care in your home. This means that you and your wife can have a bit of a break everyonce and a while. Even though your son may not be as high needs as a lot of special needs children it is physically, and emotionally draining to care for any child, let alone an HOH or Deaf child. If you want more info or just want to talk to someone with experience in working with children with special needs please do not hesitate at all to PM me. Like I said before i am in Toronto as well so I can provide you area specific resources too!

-Jenny
 
Hey!

As for the seal - it's probably wasn't made right in the first place. I used to wear Bear Huggies when I was younger, and that keeps the hearing aids on the ear. Helps especially for young kids.

As for feedback, sometimes I can hear it, most of the time I cannot hear the feedback because the mold is out of my ear, so I can't hear it. Make sense?

If you really hear the feedback too much, then it has to be a mold issue.

Hope everything works out for you! :)
 
jesse--
It would be best if you made that post under the same thread to avoid any misunderstanding because not everyone reads every thread on the message board, just for future references. :)

Anyone who doesn't know what thread the creator is speaking of my two months old son has severe hearing loss <<click there. :)
 
Perhaps anger's there because you're grieving?

Sometimes deaf people can hear the feedback but usually, no, they cannot.

Great to hear Evan's doing well with HA's.
 
In Toronto, Ontario, Canada the government appoints a family worker to work with the child and parents to go over all the resources that are available. There are several schools in Toronto that help HOH children, many programs, workshops, speech therapist, ect. Thankfully i'm living in a city that has the help that we'll need.
Click to expand...
First of all, it's WONDERFUL that he's reacting so well to hearing aids. That's an awesome awesome sign! I know that a lot of hearing parents think that ALL kids with "deaf" losses qualify for CI, but not nessarily. I know too that they tend to be really strict about who can and can't get a CI in Canada and other countries that have socialized healthcare.
Has the family worker mentioned any Sign resources as well as the traditional hoh interventions? A lot of times hoh kids don't get exposed to sign, even thou they might really benifit from Sign. Also, some hoh kids may hear really well with aids, but have expressive language difficulties (called apraxia)
 
Jesse,

How wonderful that you noticed a change right away! That is very encouraging.

On the feedback: myson was never able to hear the feedback. I would always have to call him to me and make the adjustment in volume or reseat his HA. To this day, he doesn't hear it, and has to be told his HA is ringing! If your son's losses are especially severe in the higher frequencies, changes are he doesn't hear it, either.

Re: the anger: the adjustment process to being told that our children have any form of a disability is much the same as a grieving process we experience with a loss. Anger is a natural part of that process. Allow yourself to experience that anger so that you may work through the stage, and get on to true acceptance. It is okay to be angry...infact, it is good to be angry. It shows that you are dealing with the situation realistically.

Keep is informed. We are all truly interested. :hug: to you and your family.
 
Hi Jesse,

Glad that your son is responding to sounds with his HAs. As for the feedback, sometimes I hear it and other times I dont. Depends on how high pitched the feedback is.

I am sorry that u are feeling this way. My mom was angry for a long time and never sought professional help for her anger so it is great that u are considering it cuz it is not worth staying angry about a situation u cant control for the rest of your life and let it have a negative impact with your relationship with your son. Life is too short. Many deaf people grow up to be happy and successful adults. I am deaf and happily married with 2 wonderful children, own a house, and have a great job. :)
 
Jesse,

Regarding the ear molds, we found no way to prevent the feedback. First, children that young are laying on the ground and maybe rolling around which means their ears are constantly being mashed and moved. This constantly knocks out the molds, even if they were fit properly.

Secondly, often times they are not fit properly...and even if they are the kids are growing so fast at that age that they quickly become too small which will also cause feedback.

Good luck, but for us it just took constant re-insertion of the earmolds.
 
jesse said:
A few questions now:

Can he hear the feedback?

When the feedback occurs is he able to hear other sounds in that ear?

Any suggestions for keeping the molds in place? (He's going to get new molds made in a few weeks, but until then.)
Click to expand...

I am pretty sure he can hear the feedback but is not able to figure out how to stop it. Once he figures that out I'm sure he'll stop it instantly.

Can he hear other sound along with the feedback? Yes, however the feedback will just be slightly louder than the other noises.

As for keeping the molds in place, there's no real good solution. Just make sure he gets new molds everytime the feedback gets worse.

Feel free to message me if you have any questions.

Good luck.
 
Oh and jesse, the most important thing comes from the Hitchiker's Guide to the Galaxy......Don't Panic! I know that the audis and experts really push being aided during all waking hours. Its important to hear........but don't worry if he's not aided every waking hour. Get him used to them.........but don't be superhypervilligant about him wearing them.
 
jesse said:
Hi everyone. You may remember me from my other post about my then 2-month old son having severe hearing loss.

He got his hearing aids last Friday. My wife and i noticed a change in him right away, but maybe we're nuts?!?! At the hearing aid place he was fussy as the tech was putting the first one in his ear, as soon as the tech turned it on he stopped fussing and started to look around as we spoke. He did the exact same thing with the other ear. He's been laughing, smiling so much more then ever before, he gets startled by noises, and yesterday he had them in during one of his several naps and the dog woke him up when she was barking. To our surprise he even looks in the direction of noises, but not every time. He has a totally different look to his face when we talk to him, it looks like he's listening.

Then we have the downside. The feedback drives me nuts. I have ADD so it really gets to me. He's so squirmy at this age so the molds keep losing their seal. I don't think it bothers my wife as much as it bothers me, which is good because she's with him all day. I can't think of any other downsides to them. But, the positives outweigh the negatives by far.

A few questions now:

Can he hear the feedback?

When the feedback occurs is he able to hear other sounds in that ear?

Any suggestions for keeping the molds in place? (He's going to get new molds made in a few weeks, but until then.)

So far we're happy with them, and we hope that he's actually hearing things clear enough for.... well, you know what for, but i won't go there. :) We have a very long road ahead of us, but this was a great first step.

Since this was mentioned and asked several times in my last post i'll clarify it. In Toronto, Ontario, Canada the government appoints a family worker to work with the child and parents to go over all the resources that are available. There are several schools in Toronto that help HOH children, many programs, workshops, speech therapist, ect. Thankfully i'm living in a city that has the help that we'll need.

Personally i've been having an extremely difficult time recently with everything. I'm just very angry, but i don't know at who or what. I'm going to have to speak to a professional about that because it's started to make me really depressed. :(

Thanks for reading.
Click to expand...

Glad to hear the HA's are helping.
Hope you are getting used to the whisling of the HA's when they fall off.

I remember it drove me nuts.
Especially when Lotte had managed to make a 1-piece HA into 7 separate pieces, and me finding only 5 of them.....

Hang in there..
 
depends on the level of loss, feedback can be a high pitch sounds...

But I can hear feedback, and it can be quite annoying.

if he is going to sleep, take them off deaf people have to take them off before bedtime anyway.

keep them on when he is awake.

and I agree with another poster, keep getting new molds if the feedback gets worst.. it means he have outgrown them (just like clothes)
 
deafdyke said:
First of all, it's WONDERFUL that he's reacting so well to hearing aids. That's an awesome awesome sign! I know that a lot of hearing parents think that ALL kids with "deaf" losses qualify for CI, but not nessarily.
Click to expand...

DD where do you come up with this stuff. Ci's really aren't that well known outside thedeaf/hoh community, tho that seems to be changing. But not all hearing parents think that ALL deaf children qualify for a CI.
 
jesse said:
A few questions now:

Can he hear the feedback?

When the feedback occurs is he able to hear other sounds in that ear?

Any suggestions for keeping the molds in place? (He's going to get new molds made in a few weeks, but until then.)

S
Click to expand...

Glad to hear he's responding.

Since you stated the his hearing loss is in the severe range he probably does hear the feed back. and no when it is making that noise it's very hard to hear anything else. If you have the molds in correctly and they are giving feedback there really isn't much more you can do. (beyond trying new molds) My personal experience was I could not have any vent holes. I always had to plug them because of feed back, if I got to much feedback I had to turn the vol. down, and got much less benefit from them. Also lying on them can cause feedback. Since he's so young I wonder if he thinks it's a noise he is supposed to hear thus he doesn't seem to be bothered by it.
 
Cloggy said:
I remember it drove me nuts.
Especially when Lotte had managed to make a 1-piece HA into 7 separate pieces, and me finding only 5 of them.....

Hang in there..
Click to expand...

ROFLOL...I remember the find the HA's or find the parts thing. Luckily I didn't have to fing 7 parts. :)
 
Just a tip for not having to search for those missing and disassembled HAs. Tie a piece of fishing line about 12" long to the HA, and tie a safety pin to the opposite end of the fishing line. Then pin to the back of the shirt. Even if the child removes it, it just dangles there instead of ending up across the room or under a piece of furniture. Great for not having to worry about them getting lost, especially in places like playgrounds! And saves the parent from crawling around on the floor looking for that lost aid.
 
Hi everyone. I haven't written an update in a while. Evan is now 26-weeks old, and still wearing his HA's. He hasn't been showing positive response to them, as far as reaction to sound, ect. He wears them everyday, has some reaction, but his reaction is nowhere near where it should be. My wife and myself, and the several professionals that we're dealing with don't believe that he would be able to function as a hearing/speaking child with them. We didn't just come up with that assessment on our own, he's had several tests since he started wearing them, and from a parental level we also gauge his progress. He reacts to loud noises with them on, but nothing at all that will help him learn to listen and speak. He's on his third set of ear molds cause he likes to grow lol. The current pair have lasted the longest so far.

We started AVT (Audio verbal therapy) 2 months ago, which we go to once a week for an hour. This is our new norm for the next several years. Thankfully, our therapist is one of the best in the country, we're very happy to be working with her.

This coming Friday (May 30) he'll be having an MRI/CT SCAN as part of the candidate program for CI's. As far as hearing is concerned, he is a candidate, they just need to see the inside. As long as everything looks good on the MRI/CT SCAN then he'll be implanted when the surgeon thinks he is ready. We have decided to have bilateral implants done. All of our personal research has steered us in that direction. It was not a decision that we just made without thinking, we went through all the pros and cons of both options, actually, on every option available.

Anyways, thats all for now. I'm going to try and spend more time on the forum, I've just been so busy with work, Evan, life.
 
jesse said:
Hi everyone. I haven't written an update in a while. Evan is now 26-weeks old, and still wearing his HA's. He hasn't been showing positive response to them, as far as reaction to sound, ect. He wears them everyday, has some reaction, but his reaction is nowhere near where it should be. My wife and myself, and the several professionals that we're dealing with don't believe that he would be able to function as a hearing/speaking child with them. We didn't just come up with that assessment on our own, he's had several tests since he started wearing them, and from a parental level we also gauge his progress. He reacts to loud noises with them on, but nothing at all that will help him learn to listen and speak. He's on his third set of ear molds cause he likes to grow lol. The current pair have lasted the longest so far.

We started AVT (Audio verbal therapy) 2 months ago, which we go to once a week for an hour. This is our new norm for the next several years. Thankfully, our therapist is one of the best in the country, we're very happy to be working with her.

This coming Friday (May 30) he'll be having an MRI/CT SCAN as part of the candidate program for CI's. As far as hearing is concerned, he is a candidate, they just need to see the inside. As long as everything looks good on the MRI/CT SCAN then he'll be implanted when the surgeon thinks he is ready. We have decided to have bilateral implants done. All of our personal research has steered us in that direction. It was not a decision that we just made without thinking, we went through all the pros and cons of both options, actually, on every option available.

Anyways, thats all for now. I'm going to try and spend more time on the forum, I've just been so busy with work, Evan, life.
Click to expand...

If he is not responding to sound in the speech frequencies, why are you using AVT?
 
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