Hearing Loss help

[hannahgrace]

Hi.
I am a soon to be adoptive mother of two special needs twin boys. They are a joy but quite a challenge. They are 16 mo. old but function more at 6 mo. old.

Squeaky has chronic lung disease, hypotonia, laryngomalacia, a G-J tube, apnea and bi-lateral hearing loss and probably a few other diagnosis's that I left out. He is on oxygen a lot during the day and always at night. He gets five breathing treatments a day. He is "messed" with a lot, medically. And the hearing aids. The vain of my existence. He is NOT tolerating them well at all. The buzz a lot which the audiologist says is normal when his head rubs against stuff - but he i has low tone and lays a lot of the time. They fall out ALL of the time. He hates me messing with his ears and putting them back in. When they are in, he is super fussy. We keep going back to the audiologist for adjustments, but nothing has worked thus far. Honestly, on a good day, he wears them for a couple of hours. Most days, he doesn't wear them. He's been sick a lot recently and when he is sick, I don't even mess with it as he is fussy enough.

I am at a loss on how to proceed with him. Any ideas? As an attachment parenting type of mom, I really don't know what is the loving approach to dealing with it. We are teaching him sign language.

Part of me just wants to nix the hearing aids until we get him medically more stable. Would this be wrong of me? I know he's already behind in terms of communication.

I also have to take care of his special needs brother (who is a lot like his brother medically, but more developmentally behind cognitively) and my gifted five year old who I am attempting to home school as she wants to learn everything right now. It seems like I spend way too much time trying to keep in hearing aids

[cdahlgrd]

I hate to say this, but the hearing aids will make a huge difference in his language aquasition and ability to read. If you don't keep the those nerves working, he will lose more hearing.

I do understand about only able to do so much. I also have an older sib, twins, and now a baby.

Is there some kind of hood, other distraction to keep him from fiddling? 1 of my kids picks at owies. So if I put a bandaid on his hand, he will pick at the bandaid and leave the owies (esp. one on his face) alone. Perhaps a necklace or bracelet or hoodie or something?

Can you get some help? You have a lot on your plate. Do you have someone who could help you out regularly for a year or 2? You are going to need it. more later, I have to go.

[Lindsay1234]

Were kind of in the same ballpark as you. 11 month old HATES wearing the aids. But from what Ive been (sternly) told, was that right now is when their language is exploding. I think it would be worth it to keep them in as much as possible. Some days we get just 10 min in and somedays we get a few hours! I think if you keep working on it, he'll realize that hearing aids = fun noises, mommys voice, sisters laugh, etc.

Dd2s squeaked ALL the time (I felt like throwing the aids in the river!) so the audiologist made the molds fit extra tight and now no squeaking!

Are you seeing a child/baby audiologist? Have you seen those stickers that keep it on the back of the ear?

My audiologist stresses that even if I cant get her to wear them because Im too busy with meds, cleaning, tube changes, etc. I should try and get a good solid chunk of floor time with her where I concentrate on keeping her hands busy. Can your daughter play with the other twin for a while?

[~cassie~]

If you don't have anything already, there is quite a bit of different things to keep them on more often. There are some pilot caps that help--I know there is a Hanna Anderson one that is quite popular.

I'm of the opinion to keep the aids b/c it is so important for language acquisition and it can really help him in the long run.

[PatchChild]

DS has worn hearing aids since he was 5 weeks old. I've got a couple of hints that might help out.

First, get molds made often. The better they fit, the less likely they are to get loose and squeak. You can get impressions made and then wax dipped before the molds are made, then they are a little larger when they get back and they stay fitting longer.

Second, try getting some wig tape. It makes the hearing aid stick to the head, less likely to be gently brushed off every time they turn their head.

Also, a pilot's cap can be a great help. Hannah Anderson makes a good thin one. It ties under the chin but the fabric is thin enough to hold the hearing aids in place without blocking too much noise.

Please, please, please keep at it. Hearing takes a long time to learn, as much access as you can give him will help. If you do end up needing to give them a rest, start using ASL or sign of some kind so there is still language access.

[Thistles_in_Snow]

I have a baby who is almost 10 months old. She's worn hearing aids since she was 6 months old and yes, it is a struggle to keep them in! I second the suggestion to get new ear-molds frequently. They squeal less and are easier to stay in if they are nice and tight.

I've tried the toupee tape and it hasn't worked so well for us. She can pull the hearing aids off even with the tape! Instead, I bought a few pilot caps and she wears one most of the time. If she's not wearing a cap, I have to keep her hands occupied.

The audiologist recommended putting those inflatable swimmy arms on her to keep her from being able to reach her ears. I haven't tried that yet.

Good luck! Keep them in as often as you can!

[~cassie~]

It's been a while since we had to struggle with our son to wear his aids. But remembering back, in the beginning he would rip them out all the time so we would do 10 mins on, 10 mins off-that way he could get a break and I could also get a break and not get too frusturated with constantly putting them back in. I also don't put them in first thing in the morning--he needs like an hour to wake up and then they go in. We also did a lot of distraction--lots of time outside, keeping his hands busy-a lot of the time I would have to hold him and hold his hands and just walk around or dance with him. Now he actually brings them to me asking to wear them

[Thistles_in_Snow]

Cassie, this is so reassuring to hear! Sometimes I think she's going to have to wear that hat forever! Nice to know that she will eventually quite pulling at them.

[BrayJJ]

HUGS! I just wanted to say you are not alone. Here's my story

Our son is 7 months old- but at about a 2month old level- he has a large head (hydrocephalus and other issues)- so hats dont' work for him to keep the aids in.

Our problem right now, is we never have molds to fit! They take 1 month to get back to us, and by that time, they don't fit! Then the hearing aids are having issues and the place we go to are being jerks about it. (We are currently waiting to get into a new place)

I too want to throw the aids out... because what's the point, when they don't even fit right? Are you able to get a hearing therapist through EI? Our son has a lady that comes to the house once a week- and even though the aids haven't fit right in months- she's kind of like a cheer leader to support me!

GOodluck!!

[hannahgrace]

Thats my problem too - the molds never fit. He has very shallow ears, according to the audiologist, so they just don't stick in there well. She thinks when he's older, they will, but for now, we have to live with the feedback. It drives him crazy. I did get the stupid looking pilot hat. And it helps. I will see if a friend can make a cooler looking one. The baby blue bonnet just doesn't fit his personality at all. But today was better. He wore his aids for a couple of hours. He even seemed to respond to noises and tried to make some noises. (That is another concern - he is completely silent when they are in. He babbles a lot when they are out!)

We do have a EI speech lady come. I wasn't impressed. I guess everyone just keeps saying to me - live with him being super fussy/crying and the feedback will get better eventually. We make new molds at least once month. We see at least 2 specialists a week + PT/OT/Feeding Therapy, so honestly, once a month to the audiologist is all we can fit in our healthcare schedule.

I'm not giving up on them...but I can't fight him 12 hours a day too to keep them in. I'lll make it a goal to do a couple hours a day for now.

[BrayJJ]

Sounds like we have a lot a like going on! We have OT twice a week, vision once a week, hearing once a week, and PT. Then we have appts and crap as well. Our current audiologist is 1.5 hours away...and he's a FUSSY baby, so that drive is horrible for what a 5 minute mold fit!!

With the babbling- our son does NOT babble with the aids in, but will do some sort of babbling with them out too!! How odd!