A

you are happy as you are. I mean, why be denial about something when everything is fine.

Deafness

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deafdyke

Yes, exactly. A lot of them seem to be all " oh boo hoo hoo......my child is HANDICAPPED and not "perfect" There are a bunch of parents like that on the lists I am on.....and sometimes I want to SLAP them! (and we're talking about hoh kids!)
Here is an article I wrote on that perspective: Welcome to... A Typical Life?!? (and I have a disability!)
I think a lot of it is due to not ever having knowing a real live person with a disabilty.
I think almost everyone and anyone who knows me, if they had a dhh or other mildly special needs kid wouldn't even blink.....b/c they know that deaf people can do anything except hear!
It's all a matter of perspective. I know PLENTY of parents for whom it's very understandable that they would grieve for their kids, b/c their kids are profoundly handicapped, and will ALWAYS be like babies.
O/T but now that I know more of Miss Kat's history, have you ever had her evaluated for apraxia? It's quite possible that maybe she may have some undx mild nereological issues, which might be inhibiting her progress in speech. Apraxia CAN be treated you know.
Oh, and jillo, did you get my PM?

faire_jour

I was told that you can not dx apraxia until the child has been hearing all sounds in the speech spectrum for a long time and the issues remain.

Also, she has seen the leading pediatric neuropsychologist who specializes in deaf and hoh children. We have a handle on what is and isn't going on with her.

kokonut

We're talking about parents of a deaf/hh child when it comes to denial or grief. Not about myself.

__________________
Before AD.

After AD.

"Restriction on free thought and free speech is the most dangerous of all subversions. It is the one un-American act that could most easily defeat us."
-Thurgood Marshall, former Supreme Court Justice


"... turns out they are telling the truth."

GrendelQ

Same applies to me.

WeeBeastie said: "Before a baby is born the parents think of who they will be, what they will do... "

I don't see how that expectation has been or will be let down by her deafness. I never heard "your child is deaf" = doors slamming shut, brakes squealing. Maybe that's what you are suggesting others have experienced.

Honestly, I've explored every possible limitation to any crazy dreams or wishes I might have entertained about her future prior to knowing Li-Li, and I don't see her deafness as an obstacle, but as a characteristic that sets a different path that most kids her age are taking (and the only thing I can think of as a concern is related to her CIs, not her deafness: as in, crazy midnight musing: hmmm, will she still be a candidate as an astronaut for Mars voyages with a CI? But then, maybe her ciborg-ness will actually be a plus in the application).

Doctors have estimated her potential height based on current growth rate, she's a bit tall for her demographic, but most definitely not anywhere near WNBA tall. Am I grief-stricken? No, I'm not grieving about her height,, the lost potential of playing point for the Dream or the Mystics. And I don't think I'm in denial and damaging Li-Li because I'm not addressing some unknown grief about her "lost height."

Put it in perspective. Hearing or not hearing is important, as is everything about my child, to me. As a mom, I could probably obsess about her little toe, a dimple on her cheek. But I can also see that whole amazing little person and be overcome with gratitude and wonder at the sheer perfection of what comes together. Li-Li is not all about the state of her ears. Why would I grieve when there's so much to celebrate? I've not, and more importantly, she's not lost a thing, as far as I'm concerned.

WeeBeastie

It's plainly obvious people experience things differently based on their life experience and personality.

I never, at any time, let my brief spell of grief 'damage' my child. I never treated her any differently, blamed her or wished she was different/fixed.

I was scared. I worried that there might be more than deafness involved (and there was). I didn't know ANYTHING about deafness/deaf culture/current technology and accommodations. The audiologist said my daughter "might be able to go to a regular school" but may never "communicate quite right". Because she needed further testing, we didn't even start discussing hearing aids/CI. I got the 3rd grade reading level myth and was reassured that she would be able to get help from therapists to live a "more normal life". She gave me that sympathetic head nod and shoulder pat you give a grieving family at a funeral and sent me on my way.

When I was a kid, students with special needs were sequestered. they didn't interact with the rest of us at all, even eating in their classroom and moving through the school when the halls were empty. They weren't allowed to attend the regular middle and high school even if they chose not to go to the state school for the deaf. This is future I saw for her because I didn't know better. This is what I grieved. It was more an issue of what life was going to force on her than who she would be on her own.

Maybe it's my fault. I didn't educate myself about deafness before my children were born. Like many other potential complications, I never thought it a possibility. That being said, I got over it quickly. I researched and reassured myself. I was 'over it' before we met with the EI people the first time. I made my decisions about amplification before the audiologist brought it up. I was, and still am, proactive.

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WeeBeastie
Hearing mom with a Deaf child
3y/o profound and aided Bi-bi student

shel90

I wish more parents of our deaf students were like you then maybe our students wouldnt have all their problems they have. Most of them go home to complete isolation because their families wont learn sign language. My brother was one of them growing up and I was too whenever family got together. We were always the outside looking in.

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"Wine improves with age. The older I get, the better I like it."

--- Anonymous

A

height is little different. Everyone know that how you communicate with people is your soul and heart.

shel90

__________________
"Wine improves with age. The older I get, the better I like it."

--- Anonymous

GrendelQ

yes, and in the case of most hearing families, that may be because 'leaving them as deaf and using ASL is not 'leaving them' at all -- it usually involves changing everythng about the family dynamic, from language to community to learning options. But I don't know about an alternative to 'leaving them deaf' -- providing HAs or CIs doesn't change whether or not a child is deaf.

A

yes, they are still deaf. But they can hear and they use their CI/Hearing aid frequently. Culturally Deaf don't feel the need to be more like hearing people.

Speaking of fixing, How do you feel about curing deafness with stem cells that's been on the news lately? Would you do it for your baby? If it really work, you can't call your daughter deaf anymore like you do with CI, can you? I have nothing against people who want to make their child more like them. It's their decision. I mean, hearing people are just as beautiful as deaf people . But I have to admit it does hurt when people try to cure deafness (stem cell). It make me feel deafness is not good enough for the society. You probably feel the same way if your daughter have CI, and this stem cell only work for those who have not been implanted (maybe because CI messed up the cochlear in order for it to work) ...and people say "oh I don't want CI because my daughter will still be deaf.. I take the cure!" Does it hurt to hear that from someone?

sallylou

Consider genetic research--eliminating deafness as a "defect." It makes me very nervous. It sends a powerful message. What if there are prenatal tests to screen my unborn grandchildren? That won't be my decision but it's a sobering thought.

My kids have 50% change of being late deafened. If one or both of them are late deafened, I will grieve, just like I grieved my own loss. That doesn't mean that I don't accept my kids just as they are. Like Jillio said, it's an adjustment.

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souggy

Genetic screening is silly...

Narrowing the gene pool for what we think is ideal?

What if one of those genes could had gave us an environmental advantage a thousand year later, but we ended up being wiped out because some group of idiots eradicated it in the 21st century?

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

GrendelQ

If I teach my child to play piano, I'm not rejectingthose who dance ballet as not good enough. If I value spoken language, I'm not devaluing ASL. if I provide French instead of Mandarin it's because I have access to French, not because I don't want my child to speak Mandarin.

I want Li-Li to have any opportunities for communication I can provide: I value ASL and have provided her with an immersive environment to make that possible, with a grateful nod to those like Shel90 who make that available. We opted for a CI because I value spoken languages and music, and we can give her those.

Opting for a hearing aid or a CI is not a rejection of you as a deaf person nor of ASL as a valuable means of communication.

kokonut

Right. I agree. I don't see how having a CI or even a hearing aid is a rejection of that person's deafness. It's about reaping the potential benefit and access which would otherwise not be made possible without it. Just as my hearing aid provides me the rich access to music like play the piano and hear all of the notes. I see more opportunites with it than without.

__________________
Before AD.

After AD.

"Restriction on free thought and free speech is the most dangerous of all subversions. It is the one un-American act that could most easily defeat us."
-Thurgood Marshall, former Supreme Court Justice


"... turns out they are telling the truth."

jazzy

Really? for some reason I do not believe you.

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GrendelQ

Yes, and access to ASL provides wonderful access to a community we'd not had before, too! I'm hoping Li follows your footsteps and develops a passion for the piano, ragtime is a big hit in our house! But if she takes up painting instead, wonderful. Now, if she follows your politics, on the other hand, I might start grieving. Just kidding you

actually, on second thought, I still might shed a tear or two if that were the case

jazzy

I already posted it on other website. I am against this bill. I am not going to discuss this since this forum is for too smart for me to discuss with anyone here. have a good day.

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A

My aunt once told me, if a person don't like any music, there is something terribly wrong with him. Of course she is referring to hearing person. I'm not sure I agree with that.

jillio

If you are truly open to understanding, and I have no reason to think otherwise, I am more than happy to explain. This whole issue of grief in the face of disability is a topic I have assisted parents with for some 20 years now. It is a process I personally experienced 24 years ago. It is a process that some parents have a great deal of difficulty coming to terms with as they hold onto the belief that if they express this grief, it somehow has a negative reflection on them as a parent and the love they feel for their child. Nothing could be further from the truth. Grief is a normal reaction, a very human reaction, and a reaction that is necessary to bring closure to what was and accept, fully, what is.

Before I can get to specifics, I need to ask you a couple of questions, if you don't mind answering them in this open forum. First, is your daughter your biological child? Is there a history of deafness in your family? These may seem unrelated, but if you answer them, I assure you that you will see how it is all connected.

GrendelQ

I don't mind at all. Not my bio child, we adopted Li-Li from China when she was 1YO, she had been in an institutional environment / orphanage with some foster care from a nearby family who took in several of the children since she was ~5 days old, and they were unaware that she was deaf from birth.

On both sides of the family (my dad, my husband's mother) we have had those requiring hearing aids, but in both cases these were situations of very late age-related deafness that gave us no insight into deaf culture, only an awareness of accommodating hearing loss for someone whose life activities and work had previously required hearing. I had never encountered anyone culturally deaf, had not been aware that there was a distinct culture of those who were deaf, or what a lifestyle without hearing was like. I was aware of ASL only in terms of baby sign as a stepping stone, not as a language. I was not at all familiar with cochlear implant technology.

jillio

If you are open to understanding, and I have no reason to think that you are not, I am more than happy to go through the process with you. Keep in mind, this is a topic I have assisted parents with for over 20 years, and one I personally experienced 24 years ago. It is a topic that poses great difficulty for any number of parents, as they hold onto the mistaken belief that to express guilt in any form is to cast a negative reflection on themselves as parents, and on the tremendous love they feel for their child. Emphasize the word "mistaken". Grief is nothing more than a natural and very human emotional and psychological reaction. And it is also a reaction that has been shown to be present in adjustment to disability, whether to one's own, or one's family member. Unexpressed and buried, it prevents a complete and healthy adjustment and full acceptance. While one can get through life denying any such reaction, not just to others but to themselves as well, there are very predictable and obvious consequences of doing so. Anyone familiar with the topic will tell you likewise.

Before I can take generalities and turn them into specifics that you can relate to, I need to ask a couple of questions, if you don't mind answering them here. First, is your beautiful daughter your biological child? Second, is there a history of deafness in your family that you were aware of prior to her birth? Third, what contact did you have with deafness prior to your child's birth and how familiar were you with the impact of deafness on the individual?

These may seem totally unrelated, but if you take the time to answer them, you will soon see the connectedness.

GrendelQ

Jillio, we actually started learning ASL with Li-Li before we the official diagnosis of deafness: although we could tell she wasn't hearing, we didn't know if it was a temporary issue caused by fluid in her ears/an infection, by some auditory processing disorder, or something else. Our objective was to communicate with her immediately, given the year without any language input.

flip

I think you have done a lot of wonderful things, and I am sure many deaf people would agree with me. Just saying because I don't want to add unecessary guilt and self punishment in any parents of deaf children as that don't help anyone, but at the same time I don't believe in lying about about my own experiences in an effort to soothe pain or uncertainity.

I may be nitpicking here and reading something that wasn't your intention, but you want to "give" spoken language and music to her, even if listening is one of her weakest skills. To me, it sounds like a big responsibility to give a deaf child. You perhaps understand that some people, included me, can take this as a sign of undetected grief? I am not saying it's the case here, just pointing out what I mean with grief.

(I am not saying that children should not have CI, but commenting the need to give access to the wonderful world of sounds)

flip

Too bad you don't say the same thing about ASL More opportunites with it than without.

A

I think she just have a passion for musics, which is the same as passion for ASL. At least in my opinion, but I do agree it is a big responsility to raise a deaf child that way and she have to be prepare that her child may not hear music the same way she does. From what I understand, CI deaf are still tone deaf.

flip

Heh. I wish I detested music, so I didn't get in touch with the illegal rave scene when I was younger. I blame those HAs..

sallylou

GrendelQ, I think that adoptive parents take time to consider what they can handle. I speak as a mom who was approved by an adoption agency (CCAI) but I had to stop the process before being matched with a child. Long story--I got pregnant somehow. My husband and I sat down and talked about race, institutionalization issues, special needs, etc. Many adoptive parents are open to different things. That's what is different about the adoption experience. I suspect that you had different expectations than a biological parent might have.

I'm not saying that adoption makes your daughter less of a daughter than a biological child. It's just a different way to create a family. Different process and different expectations.

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jillio

I commend you for your efforts prior to diagnosis; however, that doesn't answer the questions I posed to you.

Ignore this, please. I did not scroll back far enough!

GrendelQ

That's true, and I agree, to clarify: to me, music isn't a need, like love and care and education. Spoken English isn't a need, but language developed early is. I do value music and language, though, and want to expose her to these things so that later she'll have the foundation to continue playing music or discard it, knowing it was her choice, to continue to be part of the Deaf community or leave it, to speak English or not. These are some of the opportunities I want to place in front of her. With more time and resources on my part and continued interest on her part, I'd lay down a whole lot more than I am doing, so believe me, though I'm trying as hard as I can, I'm not congratulating myself on opening these few opportunities, there's a whole lot more we need to do now and throughout her life. (This morning, someone said to me, 'you mean you haven't started her in gymnastics yet?' with a look of horror. )

And if Li-Li exhibited no interest or ability in music , that would be just fine (I wouldn't tie her down and force her to listen to Mozart throughout the night as I might 'force' her to eat vegetables by putting them on her plate every day and slipping them into smoothies). I myself have no musical aptitude, though I was provided every opportunity to develop it. That's what I want to give her: many opportunities so she can choose her own way, lot's of guidance where decisions can't be left to toddler judgment (those greens she hates to eat). If she decides not to use her CIs, or something happens and they become unusable, she'll never have a language gap. If she does not want ASL in her life, she'll have a choice to use spoken English. But right now, we're making those judgment calls and she's getting ASL immersion AND we're developing her access to sound and spoken language.

Believe me, just as I'd never shove veggies down the throat of a crying child, if she exhibited pain or distress, I'd not make her wear CIs, or use ASL, or play the piano. She truly loves all of these things (well, not the veggies).