My son is deaf......... - Page 3

[sabine]

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

[Lou]

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.

[4imprints]

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.

[Lou]

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.

[JesiLynne]

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

:

[4imprints]

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".

[pamelamama]

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.

[indiegirl]

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.

[indiegirl]

By the way, I'm near Tacoma! Perhaps you Seattle mamas want to get together sometime? Let's plan a playdate!

[4imprints]

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.

[indiegirl]

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

[AngelBee]

[4imprints]

Indiegirl - there have been several mommas that I have spoken to who say that when their children reach puberty they had a significant drop in hearing. I asked my doctors about it and she said that there was no research stating that - but still after hearing a few stories about it you begin to worry. It wasn't anything I read in a scientific journal ...maybe I should have stated that....but I have heard it repeatedly that this is what some mommas see. Then on the other hand, you have the mommas that say their kids went through puberty just fine. You can't help but worry.

I was told that my DDs is most probably stable. SOmething that a "U" shape curve can mean that a hearing loss is stable. But then I mentioned that to someone and they said that their child had a major decrease in hearing. Gosh, I wish I could say specifically who it was from but I can't remember a specific name. I just know it was something that I took away from many conversations.

I know one mother specifically who I have talked to on the phone that her teenage daughter has had two major drops since the diagnosis. She has gone from mild/moderate to severe/profound. It worries me - that what we know right now and what we are doing right now may be worthless in a few years.

[indiegirl]

Sara, I hear the fear in your post and want to offer a hug of support. Can I (kindly) put out there two things:

We can never really know anything about the future. We only have today. Why borrow that fear? Why let the fear of what may happen ruin what you have today? I choose not to let that kind of fear dictate the choices I make in life. It may happen, sure. But all indicators are pointing to the fact that her hearing is stable for today.

You say that what you are doing today may be worthless in a few years. Again, I say nothing is worthless. All the hard word shapes and creates your current reality, which shapes what will be your future reality. Giving her all the tools she needs to advocate for herself and live in her world: be it the hearing world or the deaf world, will only make her stronger and more able to stand on her own two feet.

So what if she loses her hearing? She'll have to find her way just like she did before. You'll be there to help her.

If this is the worst thing to befall our children in this life, so be it. I'll take this any day over other issues they may face. KWIM? All we can do is trust our children to be the people they were born to be--and help them discover this world on their own.

Jesse

[4imprints]

Thanks indiegirl. I say what I feel on these boards. Its a lot easier to type them out to a bunch of strangers than keep them in all the time. I think my fears are really no different from the fears of every parent. Every parent wants their child to succeed. So..........And I agree I would take this over anything else that could be possible. I love my daughter - she is an amazing little girl to me. Its funny to watch her. I grew up so quiet and shy mainly because I was self conscious about my glasses and crooked teeth. But look at her. There are so many things that could get her down and she just smiles day in and day out. She says if "her friends don't play with her she finds someone else to play with". Man I think she's brilliant!LOL!

But I've stated before that I think we are given an amazing opportunity. I can see the beauty in her accomplishments every day. I can see how amazing it is just to hear her conquer a new long word or try to start reading. I will never take the little things for granted when it comes to her.

[indiegirl]

Our daughters sound a lot alike!

Jesse

[Lou]

Jesse, I love what you had to share about raising your child in the most holistic way for your family.

I don't necessarily think that Deaf programs offer the best option for the deaf/hoh child... it is such a huge challenge to bring together all the variations in deafness and try to educate.

I definitely agree that it is crucially important to have a language-rich environment for the deaf child! Language acquistion may not happen as naturally... so we must be vigilant that the child acquires language and is able to use it comfortably. What exact mode of language is totally up to the family, as long as the family can continue to be open to the best approach for their individual child is, and maintain awareness of their language development.

And, yes, I LOVE the Waldorf approach!! I think the Waldorf educational model works SO well for the deaf child... a language-rich environment, a educational approach that honors the individual spirit of each child and what he/she has to bring to the world.

This is all why I am homeschooling, using the Waldorf approach. My second babe is Deaf, and is also a Violet! So I believe that I am best able to provide a language-rich environment and foster that language development if we are homeschooling. In Deaf programs, so often the focus is on meeting each child's variations in language development. It is such a challenge!

Jesse, I'd love to connect with another signing Waldorf family! I was part of a group that brought Deaf children to Waldorf in northern CA a few years ago. I co-taught in a bilingual Waldorf preschool/kindergarten that had three Deaf girls in the classroom. We taught ASL classes at the local Waldorf school, had ASL summer camps, and ASL storytelling events, and so on. Two of the children eventually moved on... so the program is not active anymore, but my dear friends' child got a CI (at age 5, after developing a strong language base in ASL) and continued with Waldorf, with some interpreting.... but I don't know how much interpreting she needs at this point, at age 9. So anyway, this was all just saying how much I really love the Waldorf model and think it can be a great fit for the deaf child.

Playdate, yes!!


Again, I am honestly not trying to get into a debate on ASL versus speech. We all go through this elsewhere. What I really feel is important is that we are able to share our commonalities, and respect one another. I totally totally support the frustrations of hearing parents of deaf/hoh children regarding the militant Deaf. I don't believe that approach works, and alienates hearing parents from the Deaf community. I have many friends who chose to teach their deaf children speech, or to get ci's. As long as the child is thriving and is able to use language comfortably, and the family continues to be involved, it's all good. I've just seen so many deaf children coming from families that chose to focus on speech while neglecting language development. Those children end up at Deaf schools, severely language delayed, and starving for language. I am sure those of us here will not let that happen, no matter of the educational approach we choose. We are all striving to be conscious, commited parents. That is what is most important in the end.

[laohaire]

Originally Posted by Lou

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.

Yeah, I was big on reading as a kid. I don't know what counts as early, but I was reading at least some stuff by 3. I grew up as an only child, so books were my friends.

Originally Posted by indiegirl

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.

I didn't mention it before, but I am also legally and progressively blind. I agree her hearing loss would effect her on a broader scale. I have found that the biggest handicap involved with being deaf is a social handicap - at least in the mainstream world. My observations of blind people suggest they are much more able to socialize on a mainstream level. Being HoH means you miss the subtleties of social interactions. I struggled with it during elementary and middle school. Today I don't find I have social problems, but I think the only thing that really changed was that we adults, while still petty, don't have the SAME petty interactions that children do. I don't find I'm disadvantaged with the adult type of petty interactions

Then again, I realized I'm probably not the best person to offer my experiences to this thread. I'm debating whether I should post at all Ahhh, what the heck. Best of luck to the OP Mama.

[kay4]

My oldest dd has total hearing loss in her left ear. We found out later on with her. We were given the option to get implants (not cochlear, the kind that would transfer sounds from her deaf ear to her hearing, sorry I cannot remember what it is called) The audiolgist didn't recomend it, and after researching it more myself we decided against it.
She is in ps right now and receives services. There is an FM system in the classroom, she has preferential seating (from of the class with "good" ear towards the teacher) She is given extra time on certain tests, and is seperated for some tests that require a lot of reading, because she is easily distracted. Some things are reread to her. She has been in speech since beginning school (even before we knew of her hearing) and I just had a meeting for the annual review and she doesn't need speech anymore They left her on consult basis just in case, but don't feel she will need it. She also has audiologist consult at the school once a month for about 15 minutes just to "check it" Her school has been wonderful about this.
I am wondering whether I should get her involved with the deaf community. I mean, we haven't tried to avoid it, but haven't looked into it either.
She struggles with feeling like something is wrong with her even though we stress how this is the way God made you, everyone is special, etc. Maybe getting to know other dc like her would help.
I think ASL would be wonderful to learn for all of us regardless of how we hear.

[JesiLynne]

A small update, the deaf center called me back, and they need a diagnosis first and pointed me in the direction of the best place to get and indepth diagnosis, Childrens Hospital of WI
Bad news is the there is a 2 month wait list for a diagnosis
:

OH well, we are still working with Connor, he is signing more and starting to "talk" more

It is getting more frustrating though b/c 95% of the time we cant figure out what he is trying to tell us
SO both Connor and I end up getting frustrated
But we are working through it