View Full Version : ds's hearing aids...**Success! see #26**
11-04-2007, 03:12 PM
i'm sorry, i just need to let this all out and i have no idea where else to vent right now, so i turn to my knitting companions.
my son owen was diagnosed with hearing loss at 18 months old. he's now 20 months and we're working with the state's early intervention program, learning sign language and we've ordered his hearing aids. in the mean time, the state has lent us a pair of aids to use until his come in. which is wonderful...
except, owen won't wear them. the first couple days he wore them for 4 hours or more. it was so neat to see him relearning how to play with all of his toys, now for the sounds they make instead of the physical pushing or pulling he normally does. he also was talking more. not words, but owen-ese. making all kinds of sounds in the language he can hear.
it was so wonderful.
in the days after that we could get him to wear them for maybe 5 or 10 minutes at a time. okay. cool. at least he's wearing them right?
it's been about 5 weeks and now? he won't let us come near him with the hearing aids. i've tried letting him see them so he can see what's on his head. we've put them on his stuffed animals so he can see they have them. we've put them on me so he can see i wear them. we've tried doing the "you can only play with the playdough if you have your hearing aids in" training, and that ended with him in tears, me leaving the room to cry, and dh apologizing and tired.
all i can do right now is cry. i'm so frustrated with this whole thing. if they had just diagnosed him officially at birth (when he started failing the OAE tests they give all babies) then he would have grown up with hearing aids in and wouldn't know the difference. and i'm sure at this age we would have run into days where he fights us, but i'm sure he'd be able to hear the difference too.
but i can't dwell on "what ifs" and "i wishes".
i just don't know what to do. we've been talking to our developmental therapist/sign language teacher, and she's been helping us try. owen is just very headstrong and not easily distracted. i'm just becoming more and more aware of how far behind he's getting. and while he's learning sign language, so he's learning some form of communication, it's so frustrating when there is a simple solution that the toddler is just to little to understand...
so, i just cry when he's not in the room. i don' want him to associate me crying with him or his aids. my dh is frustrated with me crying. i'm just depressed about the whole thing and feel very litle hope for the future right now. mainly because his future relies on him. i haven't found support groups online that have people going through this. most children are diagnosed very young. or if they're diagnosed later, it's because they can hear well enough to talk so you can explain it to them. or tell them to leave them in. so far, i haven't found another person with a child his age going through this. i know they're out there, but i can't find them. i asked our DT, and she doesn't have any kids in this area with hearing loss at his age. well, she has one, but he's been in aids since birth....
anyway, i guess i just needed to get this all out. i'm just very distraught right now. trying to knit more because it's my therapy. but it's always there. and just a huge kick in the stomach with every failed attempt to get these in his little adorable ears....
so thanks for listening i guess. i'm sorry to dump all of this here....but thank you for letting me.
Jan in CA
11-04-2007, 03:28 PM
I'm sorry you're having to go through this. :hug: It's very difficult at that age because you just can't reason with them. I wonder if sound in general just seems to loud for him after having things so quiet for so long? Is there a volume you can turn down and then gradually turn up to test that theory? :shrug:
Denise in Michigan
11-04-2007, 03:56 PM
We're here to listen when you need us.:grphug:
:hug:Meghan, you need to take care of yourself. I think you need some help here, for Owen and for yourself. You seem so exhausted... and really, who wouldn't be!
I'm not sure I have good advice, but make sure his hearing aids are comfortable and don't hurt him. Once that's ruled out, you can probably ask a child psychologist to help you. A specialist might have some ideas of the best techniques to use for a child his age, and at his stage of development. It's a very difficult age to do something like this...
:muah:And of course, you can come here anytime you need to!
11-04-2007, 04:27 PM
Wish I knew what to say to help. <HUG>
Others have posted good advice.
11-04-2007, 05:26 PM
I was a speech pathology major in college and we had to take a few audiology classes. I agree with Jan. I would make sure that the aids aren't too loud for him. I don't know about hearing aids so much but I do know that this is the case in children with cochlear implants. The kids would come in and get the volume changed every week or so.
11-04-2007, 10:02 PM
we have the volume down to 1 on his hearing aids right now. it's just rough because if the loud is bothering him, a lot of the time it's him screaming while we try to put them in. so it's a catch 22. our developmental therapist is great. she works with kids in this range every day and is trained for eveything from autism to premies to whatever life throws you. she said she would ask some collegues for some more ideas for us.
for now, i'm trying to just keep myself sane. it's crazy how being strong for everyone else (dh and ds) can all of a sudden catch up with you. i feel like i've been keeping my head level this whole time just trying to get a course of action. now we have one and just can't take that first step.
thank goodness we decided to make sign language a priority right now. most 2 year olds are "terrible" because they can't communicate what they want. it's double rough when they can't understand what you're saying to begin with. so the sign language definitely helps!
and thankfully, he's a wonderful little boy who loves snuggling, giving kisses and being a goofball. that definitely makes things a lot easier.
i'm off. got the little one down to bed, dh is at a concert tonight, and i'm going to snuggle up in my bed, pop in a bad romantic comedy, and knit....ahh sweet therapy....:muah: :hug:
11-04-2007, 10:17 PM
11-04-2007, 10:37 PM
:hug: I'm so sorry that your are going through this right now. I can only imagine how frustrated you are. I only wish that I had some good solid advice for you...only :hug: :hug:
11-04-2007, 10:44 PM
I concur with the advice that you need to take some time for yourself. You need to call a girlfriend hang out, go get a massage, hang out at a coffee/tea shop, get a pedicure with your girlfriend, etc.
Have your little one stay with someone for the night, and have husband and wife night.
You need to spend some time being yourself, not mommy or wifey, then you can spend some time being just wifey, then you can go back to mommie.
11-04-2007, 11:45 PM
a massage sounds wonderful...and me time sounds wonderful too.
i signed up for spinning classes so that will give me some me time so i won't worry. i know eventually it will work out. it's so frustrating when a little baby can derail a train, ya know?
and all he does is smile and you forgive him. hahahaha
11-05-2007, 12:32 AM
How about some bribery? M & M's can go a long way toward helping a child reach a goal that he's not all that willing to go for.
And if they don't work for him, you eat them. Chocolate is good for the soul. :hug:
11-05-2007, 08:16 AM
brilliant! i do love me some chocolate!
11-05-2007, 09:26 AM
This sounds so frustrating! I really don't know what to add to the above, but you're in my thoughts and prayers.
11-05-2007, 10:06 AM
I know my dad after years of being in the mines he has hearing loss...he went to get his hearing aids and even on the lowest setting he couldn't take it... he still won't wear them...he could pick up on anything that in his world didn't exist...someone tapping their fingers...to water dripping in the sink...sounds that we can tune out he couldn't... might be that way for Owen it picks up to much for him and he doesn't know how to tune it out yet... I know they told my dad with time you will but dad never gave it time...so instead we talk really loudly with him facing us and towards his left ear...still we get Yeah...Yeah...when it doesn't go with the conversation at all...:teehee:
I'd just keep trying... it's hard for him to let ya know what it is going on...he might not know himself...new phase for him and will take some getting used to... maybe make it a game or something for him...I like Ingrid's idea too...:teehee:
:hug: for you all :hug:
11-05-2007, 11:35 AM
I'll add my sympathy, support, and empathy to all the others. It's sooo hard when you're trying to do something helpful for little ones and they're so resistant. It can feel like you're heart is breaking. I agree that you need to take some "me" time and/or some "me and hubby" time. As a care-giver for many, many years to a sister with COPD who has two daughters and no spouse, I learned quickly that finding balance between my needs and their needs is imperative...cause if you have a melt-down, who's gonna take care of them? It is difficult and may sometimes seem impossible to find that time but you really need to make it a priority. Remember, this is a long-distance race; not a sprint; you're in it for the long haul. And it will make it so much easier to really enjoy to good times when the little punkin is so cute you just wanna squeeze him and smooch him to pieces. For now, sending lots of positive energy your way!!
11-05-2007, 12:31 PM
:hug: :hug: :hug: :hug:
There is a history of hearing loss in my family, and of congenital hearing loss (please tell me that's the word to use for hearing loss at birth!!!!)
Anyhow, we've had several members of the family with Cochlear implants. Some who had normal hearing and lost theirs and some who never had hearing.
Those family members who have never heard... have almost all refused to have their implants turned up (I know that's not the right word) to receive the full effect.
My Oma is one, and she says she can't stand all that noise! Her's is set the lowest. She could increase her hearing by 80% but will not let them do that!
So... I write this on the perhaps that your son is like members of my family. Sound is an overwhelming sense.
Most of us actually have a period of brain growth in which certain connections are severed so that we don't hear every little thing. And we are well learned in the process of selective hearing.
My Aunt says its a difference like turning on the lights in the darkest night. Wow! You want to shield your eyes and almost have to fight the urge to turn off those bright overhead lights!
:hug: :hug: :hug: :hug: The fact that you care is evident and I pray for all the best!
11-05-2007, 04:11 PM
I talked to my SIL and her suggestion was to put them on him without turning them on so he could get used to them. She also said (her, not me!) that you should have been instructed to do this in the first place. He needed to get used to them being there first, then turned on the softest setting only for a few minutes at a time, gradually increasing the time.
Personally, I know nothing about it, but I do know how frustrating and heartbreaking things can be when it involves our children.
11-05-2007, 04:43 PM
Thanks for the suggestion. :hug:
Owen has only a mild-moderate hearing loss. So with the ear pieces in and the hearing aids off, it blocks his ear so he goes from hearing something to hearing nothing. on the first day, i forgot to turn on the hearing aid, and he pulled it out instantly, because he lost all hearing on that side. it's basically a VERY effective ear plug at that point. i'm sure that method works with children that have a more severe hearing loss, because it's not really blocking anything at that point.
our audiologist talked about eventually going to even less of an ear piece because he can hear pretty well in some ranges. just not where human speach falls. that way he is using the hearing that he has, and only amplifying what he needs.
i'm actually going to call his audiologist this afternoon and see what she suggests. so far i've been working with the developmental therapist. maybe there are some adjustments we can do to his ear piece or hearing aid so it will be a little easier for him to tolerate.
i've also cleared all of the chocolate out of my house leftover from halloween. i'm rather sugar sensative, but i can't resist reeces peanutbutter cups....and i think my ups and down in my blood sugar were making my emotions run wild too....thus the tears and the vent post. :eyes:
11-05-2007, 04:50 PM
Has he been evaluated for a sensory processing disorder? I'm sure your developmental therapist could give you more info about it. If he is found to have sensory difficulty, there are lots of sensory input things things you and therapists can do to help...and a lot of times kids find them really fun and comforting.
My son has some sensory issues (although that is not his main problem by any stretch). We have had a lot of good therapists through the years who have taught us techniques that help. A big one for us was brushing therapy combined with joint compressions.
Here is a checklist (http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html)to see if this may be an issue with your ds. The Out of Sync Child (http://www.amazon.com/exec/obidos/ASIN/0399523863/bookstorenow57-20)is also a great book for learning more.
I belong to a forum for parents of special needs kids, that has also given me a lot of help and support over the years. I can think of at least 3-4 kids who have had cochlear implants there and at least one deaf child. (Of course there are only a couple of us who knit there but I guess no forum is perfect :teehee: ) Feel free to PM me if you are interested.
11-05-2007, 11:08 PM
I guess the amount of hearing loss would make a huge difference. I didn't think of that. If I remember right, she said her son had around 80% hearing loss in both ears.
11-06-2007, 08:59 AM
i've never had anyone tell me what owen's hearing loss is in %, so i guess i don't know how he compares to that.
i ended up calling the audiologist. we're going in on thursday. she's going to try to vent his ear pieces some more so he can hear better through them and possibly reshape them a bit so they don't bother him so much. then she said, if we can get them on whether they really work or not, if they don't bother him, at least they're on. she said with this model of hearing aid, they feed back a lot more with more venting in the ear piece, so we might end up putting them in but leaving them off so they don't whistle. with his new hearing aids, they're digital, and they aren't as sensative and don't feed back.
she said maybe the ear pieces are uncomfortable for him and that's why he doesn't want them in his ears. we'll see what happens.
i'm going to call the state and check on his hearing aids again. it's been a couple months.
i feel better knowing we have some things to try before physically wrestling them into his ears and constantly forcing them on him...
11-06-2007, 10:35 AM
My ex boyfriend Jeff has congenital partial deafness. He doesn't wear hearing aids, and he was never taught sign language. He basically converses by a combination of reading lips and listening. I would say it's 80% lipreading and only a small portion actually hearing. If you are standing right next to him and say something, he doesn't respond unless you already had his attention. Some noises he can't hear at all, and some he seems to hear just like a regular person. He enjoys and listens to music, although I wonder what it sounds like to him. When we watched movies or TV, we put the captions on.
I often wondered why he didn't use hearing aids. He has a set that sit in a drawer, and I had never seen him wear them. I asked, and apparently, they could never get them adjusted so he was hearing the frequencies that he misses better, without the "other noises" being too loud. He can't filter out background noise at all. I think with him it was also somewhat a pride issue. I don't think he realizes that most people can tell he is hearing impaired (he would only ever say "hearing problem") just by the way he speaks. Although, some people thought he was foreign instead of partially deaf. :)
When we met it was a blind date, and he did not tell me beforehand that he was hearing impaired. It was obvious to me as he "sounds deaf," but one thing that really amazed me was how well he gets along in a hearing world. I think he had some help with notetakers in school, but he went to a mainstream school, and went to Pratt Institute in NY and is now an architect.
Just thought that might be interesting to you. I hope things work out with the hearing aids, but I guess the point (if there was one) was that it's amazing how much someone can adapt to the mainstream world even if they can't hear. I am sure you are doing the right thing with learning sign language and teaching that also, but in a hearing family I bet Owen will start to surprise you once he gets a little older, even if you can't get him to wear the aids.
11-06-2007, 11:01 AM
I just wanted to write and reassure you that your son is not unusual; many children, especially younger children (who are rebelling against everything anyways), have difficulty keeping their hearing aids in. Are there any support groups (online or in person) for parents of children with hearing loss? I'm sure that you will find a lot of parents with stories similar to yours and some good suggestions for you.
Hearing aids aren't the most comfortable things in the world and, as other people have noted, the sound input you get from them isn't always comfortable either. One of my students would actually pull her hearing aids out of her ears and stick them in her mouth (I can't imagine that tasted very good)!
I have some suggestions, which may or may not work:
1) Don't try to put his hearing aids in before he starts an activity, but wait until he is engaged in an activity (especially one that occupies his hands), and then pop them in.
2) Try to get the hearing aids on if he is playing with a toy which makes sounds that you've noticed he enjoys listening to. Say something like: "Let's listen to that again with your hearing aids. This sounds cool! Did you hear that before? Does it sound different now?"
11-07-2007, 04:54 PM
Just found your post Meg ... huge :hug: to you! You have so much on your plate right now, it's no wonder you're so stressed! The only thing I can offer, other than lots of support! - is just how I've seen people react to change. Most folks don't deal well at all, and we're talking a toddler, and we know how well they deal with change:teehee: . My younger ones - both still toddlers - get all weirded out when we don't do the same thing on any given day. To Owen, it's not of his world to hear everything many of us hear, and it may have been a little scary. He may even decide one day he likes his quiet world better, and may rely on sign and reading lips. I wouldn't give up though, and there have been some of good ideas here that you could try and could work. And I'd have to think the Dr. could give you some guidance.
So good luck with the doctor, and with Owen. You are obviously a loving, caring, and determined mom, and that is huge. Just take some time and take care of yourself - so you can keep taking care of him.:hug:
11-10-2007, 10:46 PM
we went yesterday morning and got owen's new hearing aids. they're really pretty sharp looking. they also modified his ear piece so it's more open now. that way he can use some of the hearing he DOES have.
the audiologist showed us how to put them in his ears using her favorite "hold". we sit on the floor with owen in our lap, and then throw one of our legs over his lap. that way he's held in, but not bound up. she got one of his hearing aids in, and then had ryan and i instantly start playing with him with a toy car they had. whenever he tried grabbing at the hearing aid, she would push his hand towards his head so he couldn't rip them out, say "yup that's your hearing aid" and he'd let go because he couldn't get a grip on it. after a few minutes, she did the same thing with his other hearing aid. once he was distracted, he was fine. if he reached towards his hear and tried to grab, we'd push his hand towards his head, tell him that was his hearing aid, he'd let go, and we'd play with another toy.
after making some more adjustments, it was my turn to put them in. he fought me a lot harder, but we got them in. he left them in for another 15 mins, and then we had to leave.
the other thing she said was, don't end him having his hearing aids in with him pulling them out. if he pulls them out, you put them right back in, nad a few minutes later after he's forgotten them, you say "okay. all done with the hearing aids" and take them out. that way he never "wins" by taking them out. if anything, he'll just get more frustrated doing that because we have to wrestle them back in.
new tips and new hearing aids in hand, we tried it again this morning, and he left them in for about 30 mins before taking them out. we wrestled them back in, and he left them in another 20 mins. he actually heard the phone ring today. he was playing with his train on the floor with me when it rang. he popped up like a little prairie dog trying to see what was happening. it was so cool! when i took the hearing aids out, he fussed a little bit. imagine that!
i think we'll just do this every day and increase the time. i'm going to give the daycare provider the same advice.
so it's not his hearing, it's not the sounds, it's just a little boy approaching 2 years old who has decided he'll just start that power struggle stuff early.
but thank goodness he left them in!
:woohoo: :woot: cloud9 :yay: :cheering: :happyd