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My son is deaf.........

4K views 79 replies 31 participants last post by  fairejour 
#1 ·
Hi, some of you know me
some of you probably dont

This is my first post in here. I have some to the sad comclusion that my son is somewhat deaf. He is 2 1/2 and I have been senying this since birth. He was a hospital born NICU preemie and he failed 3 hearing tests before leaving the hospital. I didnt want to believe he was deaf, I justified my reasoning by saying " He was on phenobarbital, of course he isnt gonna pay attention to a hearing test."

But now there is no denying it, when he stands 15 feet from me and I call his name normally he doesnt even look up, I have to yell to get him to respond. It hurts b/c I feel bad when I yell for him

I know he can hear when you are close to him and he does say a few words, but moslty it is "close sounding " words

I wanna cry, I wanna yell at the stupid OB who never warned me about GBS, I wanna hold him, I wanna do everything just to make it ok, but then I stop and realize IT IS OK
We can work through this, it is just gonna take some time
As soon as the tax return comes in the are signing up for insurance and taking him to an audiololgist for a diagnosis
So if there are any other mamas here who have deaf children please point me in the right direction, books, videos, anything, please help me and my son
 
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#27 ·
Jesi.

I used to date a guy who's parents were deaf. Through him and his family, I learned so much about the deaf community. I even got familiar enough with ASL that I could do some basic interpretation at my church (mostly songs that I could practice somewhat beforehand-the ex would then interpret the message).

All the best to you in this journey. I know of quite a few resources here, but that wouldn't help you much there.
 
#28 ·
It sounds like your son has alot of usable hearing. So, although this is a big shock and it is scary and hard to know what to expect, when you get aids on that kid, he will probably shoot words out like a rocket.

So, I say, get that kid aids as soon as possible!!! I am excited to hear about what kind of programs you are finding in your area.

crazy that you moved away from the school for the deaf just a few months ago!!! Something special must be meant for you where you are now.

I moved a year ago away from the neighborhood that our miss lou here just moved to! and I sure need you lou!! I swear, when the taxes are done, I will come to see you. soooon. (Now I live way across town) But wow, my very own attachment parenting deaf mama. that is a very very very special treat.

Anyway, my kid is deaf. she is just barely 3. and started riding the school bus to school the day after her birthday! crazy! Even though the school is very structured and they sign, god forbid, SEE there, I do believe dd is getting great benefit from going. She has grown up so much in the past two months (I mean in a good way, signing more, talking more, understanding more, counting, excited about letters, etc)

So, jesilynn, I am so excited for you to find some great services.

Your local children's hospital (do you have one?) could also be a wealth of resources - at least tell you what your options are. Beware, for our children's hospital is very one- sided - but, so are the ASL people. Everyone is one-sided. And I HIGHLY reccomend listening to all sides, thoroughly, at least once. I made the mistake of camping out on one side and I feel like we missed some good opportunity. One thing you learn with a special needs kid is to NEVER let your stubborn opinion get in the way of getting your kid what they need. (my stubbornness has gotten me into way more trouble than anything else)

love to you, Jennifer
 
#29 ·
hey - cdahlgrd - courtney, we don't know you do we? I just noticed that you are in seattle. What level is your son's loss? Is this new for you? or did you just find out that it was progressive? a progressive loss sounds so scary! I don't know why - as I have one who is all the way deaf - but something about not knowing how fast it is going and what to expect sounds kinda scary for me.

and twin babies too - almost a year old? wow!

How are you hanging in there?
Jennifer
 
#30 ·
Hi Mamas,

I will be posting an updaye in the next feew days

I am on to some very good leads, and one of them is 5 blocks from my house, so we will see

I am taking ds to the deaf center here in town to see what they have to ofer and the whole family is signing up for ASL classes
 
#32 ·
Hi - I just wanted to tell you our experiences. My 5 year old is moderately impaired. I always had my suspicions especially since her speech was extremely delayed but when my newborn failed his test they tested my daughter also "just to see". Come to find out - she's the one that is HOH and we still don't know about him.

I know it is so hard but I tell you my daughter is doing GREAT. She wears in -the-ear hearing aids and has been able to function like any other child - although of course there are things that we do differently.

First and foremost you need to figure out what is best for your family. We chose NOT to sign - after all we don't know anyone else who signs so if we didn't teach her speech she wouldn't have been able to communicate in the real world anyway. I have also chosen not to purchase an FM system or other things besides the hearing aids. They have not proven to be necessary to her benefit.

I joined listenup - a yahoo group that has been my savior. Also, get in touch with early intervention. Since we didn't find out until my daughter was 4 she had aged out of EI. I'm disappointed because they offer a lot of help.

ALSO - check with your local Shriner's organization - many times they provide hearing aids for free.

And PS - implants are only reserved for kids who are deaf - since my daughter is moderately impaired with her hearing between 50-60 decibles she is not eligible. 90 dcb or greater is a requirement for implants. But it seems like your son has hearing.

The only thing that I have found very different in my daughters treatment is that she wears ITE hearing aids and not BTE hearing aids. It is a relatively new treatment for children but I am much much happier with them than with BTEs. But there are only a few doctors who do it. I would research your options and figure out which directions you would want to go.

Also - some states require medicaid to pay for aids. I know LA does. SO you might want to look into that and see if you qualify.

Although they are a huge expense it can be done. My DDs cost aobut 5000 but she has a 3 year warranty where I can get a new set made. Also, they only need a new set about every 5-7 years so it isn't like it is an every year expense.

I don't know what else. Its been hard and frustrating. It is hard to adjust to the things we have to do in order for her to hear us. Like facing her. I can't just yelled to her from the kitchen! So walking back and forth takes up about 25% of my day!LOL!

But its doable. She is doing great in school and has a ton of friends. Please PM me if you have any questions.
 
#33 ·
And one more thing - absolutely DO NOT settle for just a booth evaluation. It doesn't do ANYTHING and is really up to the discretion of the doctor to read the results. Have an ABR. It gives the best results about the hearing loss. My daughter had a booth test done first by a different doctor and all she told me was that there were some "discreptencies". I went to a different doctor who followed the booth test up with and ABR and only then was she able to tell me the exact level of my daughters hearing loss.
 
#34 ·
My niece was born profoundly deaf. She received a cochlear implant at age 2, which connects to an external hearing aid (magnetically through her skull, it's pretty cool). She is 5 now and understands A LOT, although her speech can still be a little hard to understand. She went to a special needs preschool for FREE for two years (ages 3 and 4) through the early intervention program of the public schools where we live. By being there she was able to get daily speech therapy. This year she has attended mainstream kindergarten, where she has a fulltime language assistant assigned to her in the classroom, and she also still gets speech therapy. I'm just telling you what all the services are through the schools where we live--make sure you find out what is available to you and take advantage of it for your DS! There should be a lot you can do already without having to wait for $$$, including simply having your son evaluated.
 
#35 ·
Quote:

Originally Posted by 4imprints
We chose NOT to sign - after all we don't know anyone else who signs so if we didn't teach her speech she wouldn't have been able to communicate in the real world anyway.
Sorry. I don't want this to get into a debate... but I have to disagree with this comment. I am able to communicate in the real world perfectly well. I may have to use alternate modes of communication, but at least I am FLUENT in my chosen language (ASL) and can be clear and concise.

I understand a parent's choice to focus on spoken language if the child already has hearing, and is able to make use of that hearing. That IS an option.

But I don't want new parents reading this and thinking that a HoH child can learn speech and be able to "communicate in the real world" ... it doesn't always end up like that.

I think it is important to consider FLUENCY of language, of ease in communication rather than what is "the real world". If your child can have fluency and ease in communication with speech, more power to him/her! But be aware that this does not always happen, and all that energy spent learning speech can be at the expense of the development of thought and language and imagination.
 
#36 ·
I am legally deaf in both ears (moderate-to-severe loss in one, and severe loss in the other). My parents mainstreamed me (I don't sign, don't know anyone Deaf). I wear hearing aids and went to speech therapy throughout my childhood.

My mother feels like she failed me in some way. I honestly feel perfectly well adjusted. Thinking about the fact that I am deaf brings me zero sadness or any negative emotion - I feel like all it means is that sometimes when I meet new people, like at work, I have to direct them to get my attention first before speaking to me, and things like that. I watch movies with closed captioning, and my husband now actually PREFERS to watch with the cc on, even when I'm not around, because he himself likes "hearing" all of the dialogue.

I have a college degree with a 3.98 average (I'm not saying this to brag, but to reassure you that I don't feel like my hearing problem held me back in any way). I am a manager at my office. I am a mother of a hearing child. I've traveled Europe, Asia and Africa. Only one person I met in my entire LIFE (besides, of course, my parents) figured out I was deaf without being told, and everyone is always extremely surprised when they are told.

I think that in addition to what the posters above said, you'll want to be thinking about whether you want to put your son in a Deaf or mainstream culture. I don't have any advice on that, except of course that for mainstreaming, your son has to have a useful amount of hearing, hearing aids, and speech therapy. I personally am very happy that I was mainstreamed, though there are lots of very good things about the Deaf community.

Wishing you well, and just want you to be reassured that after taking some steps (which you are of course doing now), this will become very NORMAL for you and your son, no matter what direction you go in. His wings are NOT clipped.
 
#37 ·
I have no feelings that my son is disadvantaged in one way or the other, it's just a challenge for us to go through as a family and for him as an individual

I know my OP sounds pretty bad, so let me tell you somehting that might help

I went online the other night ( Tues, the day of my original post ) and I looked at about.com where it talks about deafness and HOH
It has a section about the stages of guilt and it lists 8 I believe,

I went through 7 out of 8 stages ALL IN ONE DAY
I think that is where the problems I had that day stem from

Total emotion overload! But you mamas really helped calm me down and I thank you

I dont want implants for Connor, I know that implants will take away any risidual hearing he has left and he isn't completely deaf, he can hear louder sounds and he has been able to say a dozen or so clesar words back to us

I would like to embrace the Deaf and HOH community to help parents like me who made a huge mistake by not getting this taken care of at begining

Further more, who knows, down the road I could have a child who is completely deaf, and I think I need to be prepared for that
 
#38 ·
Lou - no offense - but I was only pointing out my experiences and why I chose them. In fact, I recieve a LOT of slack from the people I have been associated with in the deaf community because originally I wanted to sign with my daughter (for the same reason that we don't know if her loss is progressive or not and I was concerned it would be better to learn it now than latter when she might actually need it). They were insulted that I wasnted to teach a child who had developed some speech to sign.
I in no way shape or form said you shouldn't sign - but I was pointing out that there are choices out there and just because somone says you have to sign or says that you have to wear BTEs it isn't the case.

Once I figured out what I wanted it was a lot easier to deal with the people who pushed their decisions on me - constantly telling me why their choices were better. I found that they were really one sided. No one offered me both sides of the spectrum and quiet frankly since my daughter does were ITEs we have been secluded by those that think their life is the only right way.

OH and PS - that whole "in the real world thing" is what I was told by the person I was put in contact with by the state who dealt with ALL deaf and HOH children in the state. It was the only "real" advice that I got. My goal is not for the present but for the future. In adulthood there aren't going to be too many people that look at a disability and automatically give you the extras that you need to cope. My daughter needs to learn to do those things for herself. People aren't going to know that to stand close to her, or to face her, or to touch her to get her attention. They aren't going to know that when she doesn't answer its because she can't hear them. She needs to learn to advocate for herself. I CHOSE because it is my choice to make to not sign with her and my reasons were because I felt that she would be better suited for life if she developed speech. I find it ridiculous that I can't express my situation and my choices in order to give someone a well rounded picture of what will happen in the future without being berated by someone who thinks that their choices are the best.
 
#40 ·
Lou-- I didn't sit here and tell you specifically that I have to "disagree" with you because I think that only ASL limits a persons ability to affectively communicate with the "world" and not just their own little circle. I didn't sit here and tell you that your decisions don't work because in "my life" what I have done has worked. Jeez. That is my point -- the adult deaf community alienates hearing parents to such a degree that it has created a divide rather than unite two communities that could learn from each other.

Sorry but it just really makes me angry when someone says that my reasons for a personal choice aren't the right reasons even though that person knows nothing of the situation. There are no two HOH children alike.
 
#41 ·
oh, sara, it sounds like you really care about your daughter and you have thought long and hard about your choices - and feel like you have come to some conclusions that work for your family. I celebrate your hard work and thoughtfulness!!! and your current course! It is so nice to have found one that you feel confident to be following!

I did appreciate you explaining about the ITE aids and the help you are getting. I am even thinking.. hmmmm, can my dd get a full-time aid in a classroom too? hmmm? It is so good to know your options. I am on listenup too!

I have gone full circle on this topic a few times... ASL SEE oral... It is so emotional!!! My kid is deaf so needs sign right now... But on many days I find this so frustrating. It isn't the signing I find frustrating really, it is my lack of fluency. Oh what a mountain of guilt and frustration, wanting to talk to my kid but not knowing exactly how. This is why an oral approach - esp for a hoh kid - is so awesome!!! (maybe more in theory.. they still need to learn the meaning of all these words) As a parent, you already know all the words to explain things...

My dd got her CI about 6 months ago. she is just 3 now and saying and understanding many spoken words in context. I was very anti-CI for a long time. and now I feel silly. wow, to be able to give my kid the ability to interact with her extended family who knows very little sign - it is really about the coolest thing ever.

Never close out options, as silly as they may seem to you at first!! If my kid got a CI a year earlier, she would be speaking and understanding sentences by now. and, as much as I love ASL, speaking to my kid in my native language - and watching her thrilled to sing & dance to music - well, it is just so very very very cool. (but, again, to jesilyn, if your son can say some words, I am fairly confident that he has alot of usable hearing and would not qualify or be offered a ci)

You know, for my dd, her parents are not deaf. I have never had deaf people go out of their way to be her family (except, I am excited to meet miss lou here - very excited!) I really really wanted to connect w/ people and have them help me learn to interact w/ her. is that using people? I am still confused by this.. but really connecting w/ deaf people has been difficult for me. I sort of gave up a year ago... decided to refocus on my family and meeting our day to day needs.

but, I do think our family's language(s) are important for her to be able to experience and be a part of. I wouldn't think so if it was a big, awful struggle for her - but she is excited to learn to listen and talk. I think her biggest frustration is not knowing how to listen and talk right now - because he papa doesn't sign particularly well and I don't sign everything I say - it is just too hard (for me right now, I am sure I will improve)

yes. sorry for rambling.
with love, jennifer
 
#42 ·
4Imprints, I'm sorry that you took offense at what I had to say.
Thank you for sharing your experiences with your daughter's deafness, I am happy that you found the approach that worked well for your family, and if your child is able to communicate via spoken word, like I said, more power to her!

I only took offense at the statement that if a Deaf child was not taught speech, that he/she would not have been able to communicate in the real world. If you had said, communicate verbally in the HEARING world, rather than communicating in general with the REAL world, perhaps that would have been a better choice of words. I was in no way disparaging of your choices, and in the remainder of my post, I was just speaking generally to parents of Deaf/HoH children who might be also reading this discussion.

I believe it is important to be aware that teaching the HoH child speech does not always lead to fluency in language. That is my major issue. I am not one of those militant ASL Deafies, and I know what you speak of, 4Imprints, but I believe each child has the right to have fluency in language.

Jen, you can 'use' me anytime for language interaction!!


I am aware of this challenge- to achieve fluency in ASL is difficult and requires all-encompassing commitment for the family. But to achieve fluency in spoken language is also difficult and requires the same commitment, and is not always successful.
 
#43 ·
Sabine - ah - don't you love listenup? Then you must understand my last post. I believe that topic has been brought up quiet a bit!LOL! In the begining I wanted soooooo bad to teach her to sign. In fact I wanted her to be a part of the deaf community. I mean - why not? I thought signing would only empower her. But then I ran into brick wall after brick wall trying to get help to learn to sign and trying to get her involved with the deaf community (which is pretty hard to find around here)- even bought myself some material (is this sounding familiar??) But it when I decided NOT to sign it was like a weight lifted off my shoulders. I didn't have that stress anymore of trying to learn. And maybe it is a little easier for my daughter. The docs were pretty impressed with her speech - they say she developed incredible lip reading skills and actually had a decent vocabulary - so maybe that made it easier for me to decide not to sign. I don't know. I can say that I think expression of feelings is difficult for any HOH/deaf child to learn at the same pace "other" children learn. I mean even with the aids my daughter still doesn't "get it" a lot of the times (now I know THAT must sound familiar!) I was so frustrated those first few months with the indecision and the going back and forth that I think other parents should know upfront that there are choices. You don't have to sign, you don't have to do oral, you don't have to do ASL or exact english, or don't have to do BTEs or ITEs, shoot - you don't even have to aid if you don't want. Knowing that I had that choice made it a lot easier once I figured out what I wanted for her. UGH I seriosly still dread meeting other HOH children who have BTEs. I always get "oh reallllly" with that undertone of suspicion - kwim?

Lou - yes, maybe I worded it wrong. and I agree with you on the fluency of language thing. just in our situatioin I guess it is a different way.
 
#44 ·
Quote:

Originally Posted by 4imprints
I can say that I think expression of feelings is difficult for any HOH/deaf child to learn at the same pace "other" children learn.
mama, I'm sorry that you find this to be true for you. Not true at all in my experience with deaf/hoh children who use sign language and have a language-rich environment. Again, this is all about fluency and ease of language. When language is alive, vital, flowing, then there is no reason that the deaf child can't learn at the same pace as hearing children.

Ahhh... I really don't want to get into this. I know the language issue can be such a difficult thing for hearing parents of deaf/HoH children.

Jesilynne, I guess this thread is a good introduction to what you will encounter as you venture in the world of deafness and hearing loss!


Laohaire, were you a early reader, or a voracious reader? How did your language acquistion happen? I find that throughout most of my experiences with well-educated and articulate Deaf/deaf people, most were really voracious readers.
 
#45 ·
Quote:
Jesilynne, I guess this thread is a good introduction to what you will encounter as you venture in the world of deafness and hearing loss!
I guess


I am taking Connor to the deaf center tommorow

I will post more on that later

BTW not only did he sign Thank you he also said it tonight

:
 
#46 ·
Lou - jeez. Do I have to explain everything in detail. Yes, my daughter has expression - in fact she's a drama queen. But I do find that it did take her longer to learn what was "sad" or "mad" than other children her age. Of course maybe that was because we didn't find out about her hearing impairement until she was four so she went through those first four "learning" years at a great disadvantage to some degree. You seem to take great offense to what I am saying. But I think it is helpful to parents of HOH or any special needs child to be able to express their feelings about every situation that comes up. I can feel like a lonely life at times when you try to process all these emotions on your own. I'm sorry that you aren't able to accept someone's comments as just that - their own feelings and I'm sorry that you always feel the need to take someones emotions and twist them to try to prove that they are wrong. Emotions aren't right or wrong - they are just expressions of the turmoil that goes on inside of us as we try to make the best out of our lives. Why do you feel the need to not allow that?

And I'm sorry if I have chosen a different life for my daughter than the one that you were given. But my daughter was already oral so why would I change that? Besides - as a teacher I know how incredibly benefitial inclusion can be and I was willing to do whatever was needed to be able to allow my daughter to be a contributing member of the "hearing" world. I don't chose to seperate my daughter from this life just because she is deaf - and no offense - but if you are what I would run into than I'm happy I didn't chose to exclude her from the "hearing world".

I just don't get it why you feel you can express your feelings but no one else can? Maybe that isn't what you intend but it is certainly what you come across as. You are implying that I'm a bad mother because of my feelings about my daughters deafness. Yes, I chose to sign because the "hearing" world would never understand her - she would be limited in her communication if she only signed and I chose not to do that. Of course, some people - you included- feel the exact opposite - that I'm limiting my daughter by only having her be oral. And that is your choice and I don't berate you for that choice even though I have strong opinions on the matter. Maybe you could lighten up a little? and yes, I do think my daughters hearing impairement (and yes, I do use the word "impairment" - people who don't like it cause it isn't PC need to get a grip - I'm free to express it as I choose) has caused her to be delayed in certain areas. Like I stated - she doesn't "get it" sometimes because maybe she hears only part of the conversation - maybe that is what you mean by "fluency". But this is what I chose and I'm free to make that choice the same way you are free to make your choice.

And honestly, if I can't come on here - a special needs forum - and freely express my feelings and emotions and freely explain why I made the choices I have made then where am I to go? Isn't this what this forum is all about? Why won't you - Lou - allow me that priviledge of expressing my feelings and explaining my choices. Just because they aren't the same choices you make doesn't make them wrong. My daughter wouldn't be thriving if they were so wrong.

I'm going to end this little tit for tat because you are really begining to make me angry. But i do have to thank you for reiterating my choices as just that - my choices. I thank god everyday that I don't let people like you influence me enough to go against what I think is best for my daughter. And if she would run into people like you everyday than I think my lucky stars she is capable of thriving in only the "hearing world" - she actually seems to get less criticism than from thos in the "deaf world".
 
#47 ·
Sara, I know this is a sensitive subject for everyone, but I am reading Lou's comments as representative of her experience, and your comments as representative of yours. I dont see any attacking in her words, only clarification of her own experience. It's clear from your comments that you feel threatened and defensive, but I think that reading back with a more detached eye, you can see that she is not attacking you or negating your experience, simply sharing her own.

This is such an important discussion. It's the history of Deaf education and it just repeats itself over and over with no resolution in sight.

With my mod hat on I am going to ask all the wonderful people contributing to this thread to take a deep breath and remember we are all mamas here to support each other. Everyone is free to share her experience -- and that sharing is surely helpful as everyone's family and experience is different.
 
#48 ·
Wow. I'm going to jump in here, even though I am afraid of doing so. I tend to stay out of the speech vs. ASL debate because it makes me feel like I can't win on either side. In the end, I have to look at my sweet girl and know as long as I keep investigating our options and making decisions based on our life's circumstance, all will be well.

We chose not to send Violet to a deaf/hoh program for many reasons. At the time, she was three and I didn't think a full-day program was in her best interest. I visited the program and even though it was a "total communication" approach (a blend of ASL and Oral, or so they say), I felt they signed at the expense of language development. I saw very oral children being asked not to talk. It made me think of the stories I heard about deaf children not being allowed to sign in year's past. It made me sad.

My experience with the deaf community makes me kind of sad, too. I was a high school drama teacher and worked closely with the school-within-a-school program for the deaf in our district. While I loved my students and found workign with them to be a real joy, I also encountered a lot of the prejudice against the hearing world that comes from the ASL community. Before I knew Violet was deaf, I formed opinions about deaf education and how both worlds were at odd with each other. It made me uncomfortable as a person with hearing to hear what our ASL community thought about us.

When we discovered Violet's hearing loss, I went to talk with my deaf students and their teachers. I was on maternity leave at the time, but still employed at the school. I was still fresh from the diagnosis and struggling with all of the feelings that come with a new special needs diagnosis. I'll always remember the lead teacher's response. She basically said, "Good! That's great!" regarding Violet's deafness. Here I was, asking for support and comfort, and she was patting me on the back. Like I had been accepted into some elite club. When I told her the level of Violet's hearing loss, she nodded and said, "Wow. That's pretty major," instead of offering me any kind of hope about what should could hear (V hears at about 55 decibles across most frequencies). I left feeling like I was in their club and I didn't want to be and I was pissed that no one in the only circle of deaf people I knew thought it was a big deal. What's more, I was offered little in the way of support for any option other than a full-immersion program or the ASL approach. They told me that any approach other than ASL was inferior.

Now, I am an adult and can see their opinions as just that: opinions. Sure, I was disappointed in their less-than-warm-and-squishy response, but I can deal. In doing my research about what direction to go with Violet, I was turned off time and time again by this idea that ONE way was going to be the best thing for her.

The thing is, she can't win. She's the deaf kid (HoH) of hearing parents. She won't ever be considered fully "deaf" by the deaf community. She won't ever be considered "normal" by the hearing world. Which is the lesser of these two evils? Giving her up to a community where we have no basis for commonality and where expressed distrust and even agression against us has been shown? Putting her into a public school program I find inferior on many levels? Or do we give her all the tools we can for living in the hearing world? Or a happy medium?

Right now we are struggling to find the happy medium. I want her to learn ASL. I know she will, too. We'll work on this as a second language. Right now she is at our local Waldorf school, after I pulled her from all public-school services. In public school, they came at us from a deficency-based educational approach. In our life, we look at things from what she CAN do and draw on those strengths first. Waldorf does a great job looking at the big picture of her development. What it lacks in services we look to private speech therapy and a very language-intensive lifestyle.

Mostly, I try to give V the tools she needs to advocate for herself. She does this with ease and grace. We talk about her hearing loss as a matter-of-fact. We don't coddle and try not to make excuses. We just live. Her hearing loss is like my needing glasses. Neither of us can make sense of things without some help. Both of us would be in real trouble without aids--hers in the form of hearing aids and mine in the form of contacts.

I do want to connect her to the deaf community and learn ASL. Right now that need isn't the biggest need in our lives but when it presents itself as a need, we'll fill it just like we've done with everything else in her life.

Jesse

ETA: I do not equate her hearing loss with my poor vision in general. Maybe it was a poor comparision. Of course her level of hearing loss effects her on a broader scale. Right now, she understands her hearing loss in those terms. She doesn't mourn for hearing she never had. She sees the situation the way I described it: she wear hearing aids like mama wears glasses. It's not a big deal for her right now.
 
#50 ·
I think everyone's initial experiences after learning about a HL diagnosis can play a major role in shaping their decisions to what they chose. For us, I was thrilled at the acceptance she recieved in the classroom and was thrilled that they assured me she could thrive in the school that I chose for her. I think if I would have faced opposition from the school or her friends I would have chosen a different path. I think in hindsight that really sucks that outside influences could be so important. And maybe its the support too. Our doctor is one of those "give them as little as they need" kind of people which I guess in turn has led me to think the same way. On the other hand, I had someone tell me "she doesn't need ASL". So there ya go. I guess that's what led to my choices. I wonder what path I would have chosen if the program she was reported to said "lets get her enrolled in ASL".

This is still all so new for us. Its only been a year and considering Katrina was in the middle and pushed back all of our testing and diagnosis several months you could technically say its only been a couple of months. I still wonder about down the road. I keep hearing that it isn't uncommon for HOH children to lose a significant amount of hearing during puberty. I wonder if that will be her and how will things be different if it does happen. This waiting stinks. I wish everything was just a definite diagnosis but it isn't.

I hate getting criticisms or questions about my choices. I swear if one more persons says "but MY doctor says children shouldn't wear ITEs" I'm going to throw my head into a brick wall. I wish that my experiences with the deaf community would have been different. I think it would have been great for her to be able to associate herself with an "elite and special" group of people. But that didn't happen for us at least not yet -- all of our support were pro - "non support" if that makes sense. Maybe it won't turn out to be the right choice but isn't that waht everything in life is about? And right now she is thriving.
 
#51 ·
Quote:

Originally Posted by 4imprints
I keep hearing that it isn't uncommon for HOH children to lose a significant amount of hearing during puberty.

And right now she is thriving.
I haven't heard this. Where did you hear it?

In the end, a thriving child = right choice, IMO.

Jesse
 
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