Bear with me, a little rant. I won't do it often, I promise.

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iowaboy

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I know they mean well, but I wish people would keep to themselves if they don't know what they're talking about. That or say, "I think that", or "hey, you know maybe", instead of acting like what they say is undisputed truth.

My baby daughter had no response on sedated ABR, but people hear her cries and tell us "there is no way she's deaf or HOH". "The doctors are wrong, they can tell by her cries." Or, "she looked at me when I spoke, she can hear, she can hear!" Or, "she doesn't have the shrill cry of a deaf child."

I'm tired of people clapping hands above her head, then after 15 or 20 claps when she makes a move, yelling, "hey see, she can hear!!!"

I'm tired of people begging us not to explore CI because it will steal her hearing, because they're just sure she can hear. (Not that we're anywhere remotely close to making a CI decision- or any other decision for that matter.) Begging, begging, making us promise.

Telling stories about their neighbor's cousin's friend who was hard of hearing and went to the hospital and got a CI and hated it, so had them take it back out that same day, and lost all hearing in that ear, and regretted it. False, false, not true... impossible, so why tell us.

Begging us to take out the hearing aids because they're sure they're hurting her ears.

Different churches asking us to bring her so they can heal her.

I mean, I love my friends and family. I appreciate thoughts and prayers. But my daughter has failed multiple screens. No response on ABR. No real noted response to normal sounds at home. She's probably deaf, or severely HOH. We're working through it. She's not going to die. This isn't the worst thing that could happen to anybody. If you want to know what we're doing, or why, ask. Don't assume. Don't offer false hope. Don't try to influence without knowing what you're talking about.

Sorry. I had to get that off my chest. I feel better now. Onward and upward.
 
Hi iowaboy, I am glad you are here.

Someone here mentioned a lifetime ban on you. I was surprised because a lifetime ban is rare in this site.

Take it from me, I am DeafBlind.

Life isn't so hard for me. I come from a 6th generation Deaf family.

ASL is my first language; I was fortunate to have ASL first as I lost a lot of my vision to the point where I have to use tactile.

Your daughter will do just fine, a great thing is that she will sleep in a loud thunderstorm and you don't have to worry if you drop something & it makes a loud noise.

I encourage you to start ASL now. Sign "milk" each time you give her the bottle/breast feed.

Sign "poopoo" "peepee" each time you change her diaper.

Sign "bath" when you bathe her, sign the colours of the clothes you put on her.

I encourage you to sign everything; stimulate her in ASL.

Here is a video of a Deaf mother with her Deaf daughter.

[yt]AmqUncdJquQ[/yt]

Watch how the cute baby responds when her mother signs "milk" and shows the bottle.
 
I am certain your friends and relatives just want to give you comfort and hope, as they know nothing of deaf people or what it means.

It certainly is no tragedy, but they will need time to process this.
 
Thank you for sharing this. ABR is pretty accurate. If she has no response then she is not hearing certain frequencies. Your friends and family are refusing to accept her loss and view it negatively. To benefit your child, they need to accept it and learn new skills in order to communicate with her and have her part of everyone's lives regardless of what types of technology she will wear.

You are right that she is not going to die and she will lead a very normal life except that she cannot hear. There are worse disability than deafness. Unfortunately, hearing people view deafness as the most severe type.

Learn all you can about your daughter's hearing loss, learn about communication options, learn about educational options, learn deaf culture and ask all kinds of questions. THEN.....educate your family and friends. Your daughter depends on you and her future depends on what you decide.

Welcome to our world.
 
yep, your friends means well, but they are wrong to deny you. Several years ago, I did the same thing to a friend of mine who found out her son have down syndrome through several pregnancy testing. I told her, that the doctors said the same thing about my son and he turned out fine. I was trying to make her feel better. Anyway, she went further testing and it was confirmed he does have down syndrome. I felt bad about brushing it off but she was in a nervous wreck at the time. I think that's what your friends and families are doing to you too, PLUS having a hard time accepting reality.

oh btw, majority of deaf can hear/feel loud sounds so clapping loudly doesn't say anything. It's matter of hearing normal sounds. about CI, alot of people who have been deaf all their life struggle with CI. Just letting you know that.

and we all been told we need healing, or we are deaf because we have a "bad soul" so that's never new to us.
 
sigh. it's like a broken record.

Read Deaf Like Me and have all your pinhead friends and relatives read it as well. It will explain everything.

(sorry for calling your friends and relatives pinheads)
 
Give your friends and family a note card with one sentence: "I'll support you no matter what." Ask them to memorize this line. Tell them that's what you need to hear. Maybe add one more line: "How can I help?" Many people just don't know how to be supportive. They need some help learning how.
 
sallylou said:
Give your friends and family a note card with one sentence: "I'll support you no matter what." Ask them to memorize this line. Tell them that's what you need to hear. Maybe add one more line: "How can I help?" Many people just don't know how to be supportive. They need some help learning how.
Click to expand...

LOL, Sallylou's plan is a lot simpler than mine, and probably more effective. :)


Good luck!
 
You're entitled to a rant on here where we understand.

Just be firm with the well-meaning people and say 'My wife and I am considering all options and whatever we decide, we'd appreciate the support no matter what your opinion is'.

How's your little girl doing?
 
It is hard for your friends and family too. As someone who is new to hearing loss it is unbelievably hard for me to get everyone in the hearing world to understand anything I am going through or even close to what I am going through. Not everyone will understand, only some will try.
People pray for my hearing, like it will get better or think just because I have some hearing they do not need to learn ASL for the future when it is all gone. They are learning like you. If you are honest with them like you are honest with us they will eventually get it. Just tell them.. Its simple, if they cannot support you and your family are they really good friends anyway?
 
Tell them that having a deaf child, friend, relative, is an opportunity to enter a new and wonderful world. Either they go through that door with you and your child or they close it and are left behind.

Have a great adventure.
 
I'd never let other people be negative towards my child! I would feel offended and tell them to either be of help and support or just stay the hell out of my life... Maybe this sounds a little bit harsh but that's how I'd react after a while if they don't understand or don't want to accept the fact that my child is deaf/hoh...

I definitely enjoyed seeing Mrs Bucket's video :D That made me smile! Kids are smarter than most of us adults think.

I'm tired of people clapping hands above her head, then after 15 or 20 claps when she makes a move, yelling, "hey see, she can hear!!!"
Click to expand...

I'm hearing and I try to put myself into the same situation as quoted above and would try to *ignore* the claps... Even though I can hear them (and your child can't) she can still *feel* something happening around her. Hence she looks up even if it takes a while for her to notice it... :roll: (sorry if I'm mistaken on this)

:hug: JL
 
I agree with JamieLynn somewhat, just not as harsh...I do remmy a doctor telling me that my deafness was a "tragedy" and asked if I did have someone who would take care of me??....I was offended, clearly so, but said nothing.....People puting hands on my ears to "heal" me....and always that saying "I'm so sorry!"

It's really hard to ignore these iodiotic clods at times! They are the ignorant ones. I'm sure they will always have "advice" to tell you....and in their own way of thinking....I would just shrug it off, change the subject, or just clearly say, "she is deaf." And she'll be just fine!
 
iowaboy said:
.......................................
I'm tired of people begging us not to explore CI because it will steal her hearing, because they're just sure she can hear. (Not that we're anywhere remotely close to making a CI decision- or any other decision for that matter.) Begging, begging, making us promise.

....................................................
Click to expand...

One decision you should be making right now is to communicate with your deaf child. The decision to learn to sign should not be delayed.
 
rockdrummer said:
One decision you should be making right now is to communicate with your deaf child. The decision to learn to sign should not be delayed.
Click to expand...

Well said.

Please consider signing with your child right now.

Language acquisition skills should be not be delayed any minute longer.
 
Be glad you are figuring out this problem now rather than later. Much easier to have something all your life than deal with it down the road. My mom half the time doesn't accept it either...she chooses when it's convenient for her. Sometimes she tells me that she things I "exaggerate" my loss...umm I am severely almost profoundly deaf...I assure you there is no exaggerating ...but if someone ELSE says anything about my deafness be it a teacher, or someone at a grocery store she is the first person to defend me...it's weird...It's just an adjustment thing. I am not sure when and if you are going for a CI evaluation but the soonest thing you should do is learn sign.
Your local library should have kids ASL sign books or baby ASL. Very beneficial. I wish I knew ASL so sometimes I wouldn't be stuck now but i'm late deafened...but one day! :) Hang in there...and you can rant about anything deaf related here..cuz we DO understand :) ...your friends and family MAY not understand now...but they will eventually. Do what's best for your daughter and take everyone else's "suggestions and opinions" and take roll em off your shoulder. Your daughters doctors and YOU know what's best. Just a suggestion though from someone again that whishes she knew ASL. Even though I wear HA's and looking into CI I still would teach your daughter ASL (if she gets CI) and spoken english too. Having many options that she can use later in life will greatly benefit her:)

Again roll those opinions off your shoulder...she's you and your wife's child lol no one elses...ppl just get scared of the unknown..they will lighten up..eventuallo:)
Hope ya feel better a bit and never hesitate to have another rant if ya need too!:)
 
sallylou said:
Give your friends and family a note card with one sentence: "I'll support you no matter what." Ask them to memorize this line. Tell them that's what you need to hear. Maybe add one more line: "How can I help?" Many people just don't know how to be supportive. They need some help learning how.
Click to expand...


:gpost: LOVE this! :gpost:
 
Mrs Bucket said:
Well said.

Please consider signing with your child right now.

Language acquisition skills should be not be delayed any minute longer.
Click to expand...

Yes this is a must really. A child regardless of their hearing status needs a foundational language which she can understand and apply effectively to her own life. This language will become the foundation for all other learning. I have done research in this in the undergraduate level, and I found extensive information regarding this. If you want I can pull my resources and post them for you to use and read to gain more insight and more knowledge to make a choice that is right for you and your daughter. Good luck, and ASL is a very expressive language, your daughter will not be missing out as long as you allow her to socialize with other Deaf and Hard of Hearing children her age. :)
 
My mother once asked if we had ever prayed and asked God to heal our daughter's deafness. I said, "No, and we have never asked Him to make her blonde either!" My daughter is Deaf, that is just part of who she is. I would never change that, because it would be taking away a part of what makes her who she is. If she was hearing she wouldn't have the same facial expressions, the same friends, or the same life experiences. Why would I wish that away??

The first few months are tough. After you get your decisions made and get back to "regular life" it will calm down and you'll be alright.
 
faire_jour said:
My mother once asked if we had ever prayed and asked God to heal our daughter's deafness. I said, "No, and we have never asked Him to make her blonde either!" My daughter is Deaf, that is just part of who she is. I would never change that, because it would be taking away a part of what makes her who she is. If she was hearing she wouldn't have the same facial expressions, the same friends, or the same life experiences. Why would I wish that away??

The first few months are tough. After you get your decisions made and get back to "regular life" it will calm down and you'll be alright.
Click to expand...

:gpost: :gpost:

It is about time that you make the comment right. I am applauding you for what you said. That make me very proud of you. Yay!!!! :cool2: :D
 
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