California Bill AB 2027

[jillio]

I don't think so. She had so many follow ups, appointments, therapies, we didn't ever have a "normal". We figured out that something was "not right" with her speech and language by 15 months and she was id'ed at 18 months. We had already started signing before her loss was discovered so it just was another thing.

So, prior to 15 months, when you began to notice something was not right, you thought of her as a deaf child or a hearing child?

From the time you brought her home from the hospital to now, you have never had to reframe your hopes, as you refer to them, for your daughter?

 

[faire_jour]

So, prior to 15 months, when you began to notice something was not right, you thought of her as a deaf child or a hearing child?

From the time you brought her home from the hospital to now, you have never had to reframe your hopes, as you refer to them, for your daughter?

She was hearing before 15 months. That's when she began losing her hearing.

 

[jillio]

She was hearing before 15 months. That's when she began losing her hearing.

So, then, first you saw her as a hearing child, and then you saw her as a child with a hearing deficit. Correct?
And, in that 15 months time, you developed no expectations, hopes, or dreams for her as a hearing child? You did not have to consciously think that she "is a hearing child." It is something that you just accepted as her being because you knew nothing else.

 

[faire_jour]

So, then, first you saw her as a hearing child, and then you saw her as a child with a hearing deficit. Correct?

I saw her as the same child, who now would use a hearing aid to access sound.

 

[jillio]

I saw her as the same child, who now would use a hearing aid to access sound.

Yes, fundamentally the same child....but the fact that she would now use a hearing aid was a change that you had not anticipated. Fair enough?

My son, following diagnosis, was the same child. Nothing in him nor about him had changed. That is not where the change occurred.

 

[faire_jour]

Yes, fundamentally the same child....but the fact that she would now use a hearing aid was a change that you had not anticipated. Fair enough?

Yeah, she was the same, so why would a hearing aid change that? We had been using ASL and we would continue. She was now hard of hearing, but we knew it was a progressive loss, so she would eventually be Deaf so we adopted the Deaf community and a perspective that she was Deaf and it was fine.

 

[jillio]

Yeah, she was the same, so why would a hearing aid change that? We had been using ASL and we would continue. She was now hard of hearing, but we knew it was a progressive loss, so she would eventually be Deaf so we adopted the Deaf community and a perspective that she was Deaf and it was fine.

That is the point. She is the same. That is not what one grieves for. It is a wider definition of grief. Grief for the change in perspective. You have illustrated several instances in which your perspective had to change. Not about your daughter, or who she was. Simply your perspective of what the future might hold. It is a perspective we all naturally take from our own experience...your and mine both were hearing. That change is perspective requires reframing. That reframing requires that we let go of some of the ideas we had regarding the future and replace them with different ideas. Often based on something we have very little experience with. It is the letting go of what was in order to accept the what is. It is letting go, not of the child or our love for that child, but of the ideas we formulate around that child.

 

[faire_jour]

That is the point. She is the same. That is not what one grieves for. It is a wider definition of grief. Grief for the change in perspective. You have illustrated several instances in which your perspective had to change. Not about your daughter, or who she was. Simply your perspective of what the future might hold. It is a perspective we all naturally take from our own experience...your and mine both were hearing. That change is perspective requires reframing. That reframing requires that we let go of some of the ideas we had regarding the future and replace them with different ideas. Often based on something we have very little experience with. It is the letting go of what was in order to accept the what is. It is letting go, not of the child or our love for that child, but of the ideas we formulate around that child.

I don't think anything changed. We didn't reframe anything. Would she still go to college, yes. Would she have a get married and have a family, yes. Would she be happy and successful in life, yes. What is different? What needs replaced?

 

[jillio]

I don't think anything changed. We didn't reframe anything. Would she still go to college, yes. Would she have a get married and have a family, yes. Would she be happy and successful in life, yes. What is different? What needs replaced?

Okay, because I am truly interested in trying, and it seems that you are truly interested in trying, let's back up and try this from another angle. Perhaps you will grasp a more tangible comparison.

When you loose a family member to death, what is it exactly that you grieve? You grieve for the loss of the influence and presence that family member had in your life. What does the eperience of grief allow you to do? It allows you to reframe your experience of your life as continuing on with a change...the change being that once that influence was present, and now it isn't. It is an emotional response to a personal loss that really isn't connected to the person at all, but is based in an idea we have about what the reality of our life is. That reality changes with any loss.

You described the horrible experience of believing your daughter would not survive, and stated that you had already grieved her death. Why do you think that was? It was because, as you were carrying her, you naturally formed ideas, based on your own previous experience, of having a child brought into your life. Then that changed, and it became necessary for you to reframe what you had expected in order to embrace the unfortunate reality that there was a chance that you might not have this child in your life.

The same thing happens with any change. Yes, your daughter will still marry and still go to college and still be happy and successful. But can you honestly say that to do that as a hearing person and to do that as a deaf person is not a different experience? When first learning that your daughter was deaf, did you not experience even a momentary fear that perhaps some of these things would be no longer possible in the way you expected they would be? Didn't you actually learn that these things were not just possible, but probable, as you gained more information about deafness and met more people who were living with deafness? Did your perspective not change as your knowledge base grew? Your expectations at first, because you are hearing, and it is a normal and natural expectation that our offspring are like us, was that your daughter would do these things as a hearing person. Her doing them as a deaf person was never even formulated as a question...until at 15 months you began to suspect something was not exactly right with her language development and her auditory responses. From the beginning, those expectations were for a hearing child. Now those expectations are for a deaf child. That, in and of itself, is a change and requires a reframing. Surely you can see that raising a deaf child differs in many real and concrete ways from raising a hearing child. Those are the differences that requires the letting go of what we believed to be true in order to accept what is true.

 

[kokonut]

*groan*

 

[jillio]

*groan*

If the topic bothers you, go away.

 

[shel90]

*groan*

Still?

 

[GrendelQ]

Possible, but certainly not probable. It is contrary to human nature not to have expectations and plans for the child you are bringing into your life.

That is the whole point. The grief is not over her hearing loss. It is over the loss of the expectation. So, you can honestly say that when your daughter was diagnosed, you knew all along that she was deaf and had based all of your prior plans and expectations on the fact that you had a deaf child without ever having been told that she was deaf? That prior to diagnosis, or even suspicion of hearing loss, you saw your daughter from a persective other than that of having a hearing child?

I had no prior idea my child was deaf. But my daughter's deafness has not and will not have any bearing on the expectation I had to love, care for, cherish, and raise an amazing human being. I know grief, and I would indeed grieve that loss deeply, but thank goodness, I've not experienced it and retain great hopes.

Jillio, I was hoping for some insight from you, given the build-up, but I really think you are crossing the line in this amateurish attempt to build a psych. profile. Your analysis is exposing a lot more about your own issues and fears regarding deafness than mine, and that seems to be the case as you try unsuccessfully to unpack FJs head as well. I'm sure you think that you know best, that's obvious in your approach, and can assess what's going on in our minds better than we do. But consider too that you may simply be projecting your own fears, undesirable thoughts, motivations, desires, and feelings onto us. Just as you described denial, projection too is a common process that every one uses to some degree.

Some wonderful parents like WeeBeastie grieved a loss of expectation, some didn't. I don't think you are qualified as the arbiter of how all parents ought to react to learning a child is deaf. There's no template we have to follow, no matter how much you want to see your world vision validated by my experience.

Perhaps we all should follow your advice in one sense and 'stick to the topic' -- which is the bill, not what expectations you ascribe to new parents. Not all of us expected ballerinas.

 

[kokonut]

I had no prior idea my child was deaf. But my daughter's deafness has not and will not have any bearing on the expectation I had to love, care for, cherish, and raise an amazing human being. I know grief, and I would indeed grieve that loss deeply, but thank goodness, I've not experienced it and retain great hopes.

Jillio, I was hoping for some insight from you, given the build-up, but I really think you are crossing the line in this amateurish attempt to build a psych. profile. Your analysis is exposing a lot more about your own issues and fears regarding deafness than mine, and that seems to be the case as you try unsuccessfully to unpack FJs head as well. I'm sure you think that you know best, that's obvious in your approach, and can assess what's going on in our minds better than we do. But consider too that you may simply be projecting your own fears, undesirable thoughts, motivations, desires, and feelings onto us. Just as you described denial, projection too is a common process that every one uses to some degree.

Some wonderful parents like WeeBeastie grieved a loss of expectation, some didn't. I don't think you are qualified as the arbiter of how all parents ought to react to learning a child is deaf. There's no template we have to follow, no matter how much you want to see your world vision validated by my experience.

Perhaps we all should follow your advice in one sense and 'stick to the topic' -- which is the bill, not what expectations you ascribe to new parents. Not all of us expected ballerinas.

Very aptly put. Yes. Let's stick to the topic. A thread can always be made to cover this area but who wouldn't want to be psychoanalyzed in every orafice by a person pearing over its glasses looking down at you taking notes? I agree, Grendel. Your experience is your own personal one. All I can say is that a devoted and loving mother is the best one to have. Li's is blessed to have you. Just as I have been blessed by a devoted and loving mother of my own growing up.

 

[faire_jour]

As I said before, one of my good friends did greive when her child was found to be deaf. She is Deaf and so is her husband and his entire family. Clearly she grew up with a Deaf perspective and knew what it was like to be Deaf, but she still was extremely upset and had to work through her feelings. Every parent and family is different and reacts differently.

 

[jillio]

I had no prior idea my child was deaf. But my daughter's deafness has not and will not have any bearing on the expectation I had to love, care for, cherish, and raise an amazing human being. I know grief, and I would indeed grieve that loss deeply, but thank goodness, I've not experienced it and retain great hopes.

Jillio, I was hoping for some insight from you, given the build-up, but I really think you are crossing the line in this amateurish attempt to build a psych. profile. Your analysis is exposing a lot more about your own issues and fears regarding deafness than mine, and that seems to be the case as you try unsuccessfully to unpack FJs head as well. I'm sure you think that you know best, that's obvious in your approach, and can assess what's going on in our minds better than we do. But consider too that you may simply be projecting your own fears, undesirable thoughts, motivations, desires, and feelings onto us. Just as you described denial, projection too is a common process that every one uses to some degree.

Some wonderful parents like WeeBeastie grieved a loss of expectation, some didn't. I don't think you are qualified as the arbiter of how all parents ought to react to learning a child is deaf. There's no template we have to follow, no matter how much you want to see your world vision validated by my experience.

Perhaps we all should follow your advice in one sense and 'stick to the topic' -- which is the bill, not what expectations you ascribe to new parents. Not all of us expected ballerinas.

Well, GrendelQ, the only amateurish attempt that is being undertaken is the one that you, personally, are attempting now. Of course there is no template you have to follow. You can follow any template you choose. However, there are those templates that lead to healthy results for both parent and child, and there are those that lead to less than heathy results for both parent and child. The parent that cannot admit the negative experience certainly is not free to elaborate on the positive.

Regarding my own deaf child...I have no issues and fears. My son has been raised in a bilingual environment by a parent who is unafraid to be honest regarding her emotional reactions. He is currently a graduate student at a major hearing university. He is living, and has always lived, a happy and successful life, inpart because he had a mother that saw no need to make him a reasonable facsimile of a hearing child, and freely admits that raising a deaf child is not the same experience, for the child or the parent, as raising a hearing child. Only when one can admit that those adjustments to life and expectation are necessary can one free oneself to actually receive the help and advise that is most beneficial. That would be the help and advise of those that have walked that road and made a success of it, as well. Namely, not the audiologists, not the surgeons, not the "hearing experts", but the deaf/Deaf themselves. Until you are able to admit to the differences, you will never be able to ask the people who are the most valuable to your daughter how to deal with those differences. Consequently, you will be shutting out the most valuable resource you can have.

The sad fact of the matter is, deaf children continue to suffer the negative effects of the parent who refuses to honestly admit their emotional reaction, and spends all of their time denying it. "I didn't grieve! OMG, that would make me a horrible mother! And I will prove I am not a horrible mother...look at all I do. I got my child surgery, I spend 24/7 turning my home into a speech center, I go to therapy with her. How dare you say I would grieve." That kind of frenzied action in a attempt to change what is instead of accepting what is the root of so many of the difficulties we are seeing in deaf children today.

So, yes, GrendelQ...you are free to choose any template you desire, as is any other parent. But then, you are also free to accept the consequences of that choice. And never forget, that many of those consequences will be experienced not just by you.

 

[jillio]

Very aptly put. Yes. Let's stick to the topic. A thread can always be made to cover this area but who wouldn't want to be psychoanalyzed in every orafice by a person pearing over its glasses looking down at you taking notes? I agree, Grendel. Your experience is your own personal one. All I can say is that a devoted and loving mother is the best one to have. Li's is blessed to have you. Just as I have been blessed by a devoted and loving mother of my own growing up.

Then what happened?

 

[faire_jour]

Well, GrendelQ, the only amateurish attempt that is being undertaken is the one that you, personally, are attempting now. Of course there is no template you have to follow. You can follow any template you choose. However, there are those templates that lead to healthy results for both parent and child, and there are those that lead to less than heathy results for both parent and child. The parent that cannot admit the negative experience certainly is not free to elaborate on the positive.

Regarding my own deaf child...I have no issues and fears. My son has been raised in a bilingual environment by a parent who is unafraid to be honest regarding her emotional reactions. He is currently a graduate student at a major hearing university. He is living, and has always lived, a happy and successful life, inpart because he had a mother that saw no need to make him a reasonable facsimile of a hearing child, and freely admits that raising a deaf child is not the same experience, for the child or the parent, as raising a hearing child. Only when one can admit that those adjustments to life and expectation are necessary can one free oneself to actually receive the help and advise that is most beneficial. That would be the help and advise of those that have walked that road and made a success of it, as well. Namely, not the audiologists, not the surgeons, not the "hearing experts", but the deaf/Deaf themselves. Until you are able to admit to the differences, you will never be able to ask the people who are the most valuable to your daughter how to deal with those differences. Consequently, you will be shutting out the most valuable resource you can have.

The sad fact of the matter is, deaf children continue to suffer the negative effects of the parent who refuses to honestly admit their emotional reaction, and spends all of their time denying it. "I didn't grieve! OMG, that would make me a horrible mother! And I will prove I am not a horrible mother...look at all I do. I got my child surgery, I spend 24/7 turning my home into a speech center, I go to therapy with her. How dare you say I would grieve." That kind of frenzied action in a attempt to change what is instead of accepting what is the root of so many of the difficulties we are seeing in deaf children today.

So, yes, GrendelQ...you are free to choose any template you desire, as is any other parent. But then, you are also free to accept the consequences of that choice. And never forget, that many of those consequences will be experienced not just by you.

Clearly she listens to the advice of Deaf people, that is why Li-Li's first language is ASL and she attends a bi-bi school for the Deaf. Perhaps she doesn't listen to hearing people who believe they speak for the Deaf community and all "good" hearing parents.

 

[jillio]

Clearly she listens to the advice of Deaf people, that is why Li-Li's first language is ASL and she attends a bi-bi school for the Deaf. Perhaps she doesn't listen to hearing people who believe they speak for the Deaf community and all "good" hearing parents.

Such a narrow perspective. And such qualification. What exactly is your fixation on "good parent"? It is certainly not a term I have ever used.

 

[faire_jour]

Such a narrow perspective. And such qualification. What exactly is your fixation on "good parent"? It is certainly not a term I have ever used.

It is you who believes there is only one right way to raise and educate a deaf child. I believe that many different things work for different children.