Please help.. without insults... please. - Page 2

[jocelyndale]

A friend of mine who has opted (as an adult) to get CI recommended talking to the folks on this list:
http://groups.yahoo.com/group/cicircle/

I think it's a parents' circle. Of course, she also points out that your charge's parents may be on that list, so be careful where you tread.

I have no experience whatsoever with hearing issues or CI, but I do get easily overwhelmed with certain types of noise/frequencies and the sensory set-up mentioned above is exactly the kind of thing I seek out when I'm in a situation where I can't escape that noise. It's better than clamping my hands over my ears and shrieking, though I'm tempted. You might try something like that, just in case this is a sensory input issue.

[ahimsa_in_action]

Originally Posted by rachel_eva

i thinkyou should also see about getting the CI turned off/taken out. that story just breaks my heart.

Doesn't it just make you want to go and do it yourself (if you could)? Stories like these are almost unbearable for me. This little girl sounds like she's being tortured....oh, how it breaks my heart, too

[blessedwithboys]

Thank goodness this poor child has someone as kind and understanding as you in her life!

Would you ever consider reporting her parents for their abusive and neglectful "care"?

[meemee]

i have no helpful suggestions to add here but agree how sad this situation is.

i am so glad that NC you are doing this. that you are willing to put yourself so much out there. this is something the parents 'should' be looking into but i am guessing they have bought into the doctor knows best theory. hopefully you can help guide the parents to finding something.

i hope something comes out of this and she finds some relief from this nightmare.

i wonder if 10 years or so from now people will look back and call this a 'barbaric' side-effect when they better understand this process.

[The4OfUs]

Just coming back to clear up that I don't have a problem with the implants in and of themselves; my problem is that the poor girl is obviously having problems, and the acting out is for some reason (trauma from surgery, etc. etc.) and the fact that this is being called a discipline problem instead of the poor girl getting the intervention she needs just breaks my heart. I don't have much of an opinion one way or another about the implants...my heart just hurts for her because she's trying to tell her parents that there is a physical or emotional problem, and they're just not listening. nextcommercial, I'll be thinking of you and hoping you find a way to advocate for the girl. I think the recommendation of Early Intervention is a GREAT one. Maybe you could offer it up to 'all' the parents, since it's free and could be done at your house?

[meemee]

Originally Posted by blessedwithboys

Would you ever consider reporting her parents for their abusive and neglectful "care"?

woah woah woah!!! lets not jump to conclusions. by reporting the poor child jumps straight from the pan into the fire. take the chance of taking NC away from the little girl.

look at the parents. they are low income. can barely make ends meet. they are doing what they think is in the best interest of the child. they do not have this thread for education. they are overwhelmed and doing the best they can at the moment.

if someone does report nothing will be done. except bad blood.

do you know how many special needs children are locked in their because the parents cant handle it anymore. sad but true. the parents need help. need resources. but there isnt much there to help them.

[One_Girl]

I think you should document her triggers. Try to write down what seems to have set of the screaming for a week or two to look for patterns of things that you can prevent.

[cyberfish]

Deaf and hard of hearing people do not hear things the same way as hearing people do. This is true regardless of whether or not they amplify their surroundings with hearing aids or cochlear implants.
This little girl was deaf for the first almost 2 years of her life. And suddenly there is all this NOISE. She is probably overwhelmed by it all. Have you ever walked into a crowded restaurant from a quiet outside? Now imagine that happening to you all the time. Imagine being 2 and not fully understanding what has happened to you after getting implants. She was signing before but people suddenly decided for her that she could only use spoken language. A language that is probably unclear for her and, if she couldn't hear before, brand new.
I am a very hard of hearing adult, deafened in my late teens. I've had lots of deaf friends and volunteered with deaf kids. Across the board people hate their cochlear implants. I have to work very hard to hear things in a noisy room with my hearing aids. I'm told the cochlear implants distort sounds and it just sounds like a lot of noise. Older deaf kids often do have discipline problems because their parents either let them do what they want or are harshly punitive because they can't communicate. This is why they get the cochlear implants in the first place -- they think it will be the magic communication bullet and are unpleasantly surprised when it's not. So I'm not surprised that everyone is just assuming it's a discipline issue, when it's probably not.
I think this little girl is scared, confused, and overwhelmed. I think the best you can do is make her feel safe, comforted, and reassured and it sounds like you're doing just that. Accept her for who she is.
A screaming place sounds like a good idea. "You need to scream? I do too. Let's scream together."

[GuildJenn]

Yup, a whole bunch of sound suddenly in my life, and then my parents start spraying me in the face... I'd scream too actually. It sounds like you are doing an amazing job.

I wonder a bit if the screaming helps because then that's all she can hear? Maybe some sustained sounds (like new age music that doesn't change registers too suddenly, or not-too-intense drumming) would help to even out the sounds around her? This helps with my sensitive-to-sound son... but it is just tossing something out there; I really have no experience with CIs or anything like that.

[kcstar]

Is there any way that you can work with her on ASL, so at least she can communicate at your place? Possibly provide the parents with the research/books on how ASL even benefits hearing children, reducing frustration and improving communication skills.

[cyberfish]

I wanted to add, can you sign and talk to her at the same time? It's not really ASL and it might not go over well with her parents if they are dead set on a hearing only model of life, but the reality is this girl is not hearing. Maybe giving her some choices about how *she* wants to communicate may reduce the screaming if in fact the screaming is caused by her frustration.

Talking while you sign makes her see that there is more than one way to communicate and if she feels she can't wear her ears one day she is not "stuck." Maybe she will take comfort in seeing her old way of communicating, even though you say she's forgotten most of the signs.

An ability to communicate and function sans ears will be even more important later if she wants to go swimming, slide down a plastic slide, etc. -- places she can't wear the outer portion of the implant.

Sorry this is the best advice I have. I feel for you and this poor girl.

[nextcommercial]

They are actually wonderful parents. They are just frustrated and at a loss for what to do. I don't complain much to them because they are so afraid I will let them go that they overreact. They adore her. Everyone adores her. She's incredibly cute.

Their attempts to stop the screaming are dumb ideas.. but they will see that this isn't working, and stop, then try something else. Putting her in her room, may be better than making the whole house mad at her.

They made the choice for the Cochlear implants and I doubt they made that decision lightly. They researched it, they asked questions, and that is what they chose.

I don't understand why they have chosen not to use sign language, but they obviously researched that too. I agree that having both would be safer and less frustrating for her.

Oddly.. today went better than most days. Maybe it was because she slept a long time, or because I vented to you, or because I never did put her ears on at all today. (she got here before nap time) Whatever the reason, it was a really good day, and I got a huge kick out of her.

[annanicole]

Originally Posted by nextcommercial

They are actually wonderful parents. They are just frustrated and at a loss for what to do. I don't complain much to them because they are so afraid I will let them go that they overreact. They adore her. Everyone adores her. She's incredibly cute.

Their attempts to stop the screaming are dumb ideas.. but they will see that this isn't working, and stop, then try something else. Putting her in her room, may be better than making the whole house mad at her.

They made the choice for the Cochlear implants and I doubt they made that decision lightly. They researched it, they asked questions, and that is what they chose.

I don't understand why they have chosen not to use sign language, but they obviously researched that too. I agree that having both would be safer and less frustrating for her.

Oddly.. today went better than most days. Maybe it was because she slept a long time, or because I vented to you, or because I never did put her ears on at all today. (she got here before nap time) Whatever the reason, it was a really good day, and I got a huge kick out of her.

You're a good friend to these people! Keep up the researching. 3 of my cousins are deaf. The main philosophy, right wrong or indifferent, to not teaching deaf children sign language is; sign language is a very very simple language much simpler then our spoken language. Therefore, if you teach sign language, it will be MUCH more difficult to teach spoken launguage later. For hearing people this isn't a big deal, but for hearing impaired spoken language is such a difficult task to begin with, so the thinking is people will take the path of least resistance, and not fight to learn spoken language.

So if you agree with this philosophy I can understand not wanting to teach ASL.

good luck, it sounds like you needed to vent, and this little girl is frustrated to the max and sounds way overloaded.

[The4OfUs]

Originally Posted by nextcommercial

They are actually wonderful parents. They are just frustrated and at a loss for what to do. I don't complain much to them because they are so afraid I will let them go that they overreact. They adore her. Everyone adores her. She's incredibly cute.

<snip>

Oddly.. today went better than most days. Maybe it was because she slept a long time, or because I vented to you, or because I never did put her ears on at all today. (she got here before nap time) Whatever the reason, it was a really good day, and I got a huge kick out of her.

So if they're at a loss for what to do now, what would happen if you just didn't put the amplifiers on for a while, and if her behavior improves you could not that to them and kind of show them that while this was a well-researched decision that they made, that it's clearly NOT working for the little girl at this point.

It would also work in that if the behaviors *don't* improve, maybe it really is a discipline problem and you can go from there.

I'm just thinking, have a frank, caring talk with them. She's obviously unhappy and acting out. She's still so young, I can't see what harm taking 2-3 weeks of not using the amplifiers and seeing if her behavior improves is going to do in terms of her hearing/speech. If she's already not communicating much since moving to verbal after they stopped signing, you're not losing much by her not wearing the amplifiers, KWIM? If after a couple weeks her behavior improves, then they could try to figure out how to help her in other ways until *she's* more ready for the amplifiers....if her behavior doesn't improve with them off, then it becomes more of a discipline thing. Even if it's just that she hates the things on her ears, and it's not actually hurting her, I mean...she's what - not even 3 years old? Just over 2? She's so little.

I just don't see why they're not willing to do a trial of the amplifiers off - she's so young, I can't see how a few weeks would make that much of a difference at this point, when the gains (in her temperament and emotional health) could be huge.

I just really feel for her. Whether it's pain, or just discomfort, or even just annoyance with the amplifiers, she's been put through a lot that was not of her choosing at all. She has had no control over any of it, and that's likely scary and frustrating for her.

[tbone_kneegrabber]

Originally Posted by annanicole

You're a good friend to these people! Keep up the researching. 3 of my cousins are deaf. The main philosophy, right wrong or indifferent, to not teaching deaf children sign language is; sign language is a very very simple language much simpler then our spoken language. Therefore, if you teach sign language, it will be MUCH more difficult to teach spoken launguage later. For hearing people this isn't a big deal, but for hearing impaired spoken language is such a difficult task to begin with, so the thinking is people will take the path of least resistance, and not fight to learn spoken language.

So if you agree with this philosophy I can understand not wanting to teach ASL.

good luck, it sounds like you needed to vent, and this little girl is frustrated to the max and sounds way overloaded.

Sorry I couldn't let this comment go without saying something. ASL is not "simple" language. It is just as complex as any spoken language. It is easier for deaf people to use than spoken language, but not because it is "simple" but because it is a visual language.

I'm sorry to jump on you, but that statement was wrong and offensive.

[b_light]

I was a nanny for a little boy who has cochlear implants. I went to every single appointment and both surgeries (his first implant failed ), and I took him by myself to about 90% of his speech therapist appointments. Both of his parents had to work a lot to afford all of his care (he also has severe CP).

Some things I've learned from that experience that may help you:

-In the beginning (and I'd still consider her being in the beginning, first year and all), the child has great difficulty in distinguishing between background noise and noises that we would normally isolate. All at the same time, one can hear the air conditioner, the neighbor's dog barking, cars on the street, the toilet swishing, the fish tank, footsteps, moving chairs in and out, plus all those things we actually WANT to hear--like people talking to us. It's difficult in the beginning to isolate out just what other people want you to hear. Some homes/schools limit as much background noise as possible, cut a tennis ball and put on the bottom of chairs (to make that sound much softer), etc.

-Are there different settings on her implant? I'm actually surprised she doesn't knock it off all the time. The boy I babysat had barely any motor skills and he'd always find a way... (by the way, he likes it now--after 4 years of having it). Anyway, I thought of this especially since you said she's often better right after an adjustment. The boy I babysat would often get his on a different setting that would irritate him more. So, making sure the number on the implant says what it's supposed to may help. Or....like the boy I babysat, they may be setting it up to progressively change over a few weeks. He'd have, say, 3 settings and the first would be similar to what he already had, then the next one would be tweaked a little, and the third even more. And each setting was meant to be worn for a week or so.

-I know several have mentioned a second opinion, or an insistence to look further. I agree, but respect that you have very little control over that. But implants CAN have problems.

I hope things start to look better soon!

[nextcommercial]

Originally Posted by b_light

. It's difficult in the beginning to isolate out just what other people want you to hear. Some homes/schools limit as much background noise as possible, cut a tennis ball and put on the bottom of chairs (to make that sound much softer), etc.

Sadly.. I think that's what it boils down to. Our enviroment is just too loud. She's 90% of the noise, and if she'd quiet down, the others would too. Her sister is super loud also, and I know it's because you have to yell to be heard over the little one. Our house is loud. Their house is loud. Her deaf pre-school is loud. (they sent her home early again BTW)

I will have to find ways to muffle some of our noise. Maybe that will help. Plus having less than half of my group over the summer should make a difference.