California Bill AB 2027

[jillio]

It can be a loss of expectations. Before a baby is born the parents think of who they will be, what they will do... You see them becoming a dancer, musician, scholar, athlete, whatever. You long to hear that first word.

Then, with a diagnosis of hearing loss, especially if you are not familiar with it, all of those images become 'what could have been'. You mourn the loss of the little ballerina you didn't have yet because you don't know that deaf kids can still dance even if they can't hear the music. You see your future change from tball and swim lessons to speech therapy and hearing aids because you haven't learned yet that they can do it all and more!

When my daughter was diagnosed, I was nearly inconsolable for a whole afternoon because I didn't think she'd ever be able to use an iPod. Silly, I know, but in the shock and uncertainty many parents are sent home with, it's not uncommon. It didn't help that she was only a month old and I hadn't slept properly in 2 months. Rather than continue to be angry, I hit the web and learned that there are accommodations for the deaf to use audio equipment.

Thank you for that honest sharing of feelings and experience, WeeBeastie. I commend you on the progress you have made, and can assure you that you are in a place that allows you to be the best help to your child that you possibly can be, and to make family life a safe and secure place.

Additionally, please ignore any ignorant comments that would suggest anything negative toward your parenting. Your work at getting in touch with and reconciling your honest feelings is nothing but a positive for you and your child.

 

[jillio]

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.

Exactly, WeeBeastie. It is not about allowing your grief to negatively impact your child. That happens when one refuses to recognize and identify it, for what ever reason. Honest recognition and reconciliation is nothing but positive for both you and your child. Your search to find information was, in effect, the way you dealt with your grief over the intangible loss of expectation and belief. I dealt with my own son's diagnosis in much the same way. Gaining information and connection to those that have actually experienced deafness is a very empowering thing. You apparently are proactive by nature, and that is a strength that will make adjustments of all sorts easier for you.

 

[jillio]

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.

Agreed. More parents like WeeBeastie would certainly be a benefit.

 

[jillio]

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

Have you ever stopped to consider that your proactive stance in learning ASL was actually your innate effort to deal with your intanglible loss of expectation? Perhaps you did not identify it as grief, but are you open to considering such?

 

[jillio]

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)

Excellent, flip. And please let me clarify...none of this is about making a parent feel guilty or to induce self punishment. Parents quite often manage to do that themselves without any encouragement at all. This is quite the opposite. It is about reducing the guilt and self punishment that is inherent in dishonest and buried emotional response.

 

[jillio]

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).

With each and every post of yours I read, it becomes more obvious that you have, indeed, been going through the process of grief. Perhaps it is just that you did not identify it as such, because of the negative connotation so many attach to the label. Unfortunately, those societal judgements, some of which we have seen demonstrated here, are one of the barriers that make it so diffcult for a parent to actually identify and deal with their own emotional responses; very natural and human emotional responses. Which is truly a shame, because healthier, more well adjusted parents means healthier, more well adjusted children. We have seen both sides of the coin, and the cyclical nature of it, here in this thread alone.

 

[flip]

GrendelQ, you impress me with that what you are doing, and sounds like you are having a great time with your child

Apologize if you felt the need to defend yourself, just because I choosed a sentence from your post as an example of what grief can look like, even if it's clear to anyone that it isn't the case here.

Keep up the great work!

 

[GrendelQ]

With each and every post of yours I read, it becomes more obvious that you have, indeed, been going through the process of grief. Perhaps it is just that you did not identify it as such, because of the negative connotation so many attach to the label. Unfortunately, those societal judgements, some of which we have seen demonstrated here, are one of the barriers that make it so diffcult for a parent to actually identify and deal with their own emotional responses; very natural and human emotional responses. Which is truly a shame, because healthier, more well adjusted parents means healthier, more well adjusted children. We have seen both sides of the coin, and the cyclical nature of it, here in this thread alone.

could be, in which case, how is your statement helping anyone?
You are not explaining what it is you think I've lost and should be grieving and have only suggested that our early adoption of ASL is somehow a negative or an indication of some great damage we will do to Li-Li.

On the other hand, perhaps you are projecting on me your own sense of disappointment in some expectation you had for yorself.

 

[kokonut]

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

Interesting. Ragtime you say? What do you play? Scott Joplin? Lamb? W.R. McKanlass, Charles Leslie Johnson, George Botsford, Holmes Travis..? I mean is it for you, the whole family, or just for Li's benefit?

 

[flip]

Excellent, flip. And please let me clarify...none of this is about making a parent feel guilty or to induce self punishment. Parents quite often manage to do that themselves without any encouragement at all. This is quite the opposite. It is about reducing the guilt and self punishment that is inherent in dishonest and buried emotional response.

Thanks. That's why I think deafdyke's suggestion about some counselling as a part of the bill mentioned in the OP, is excellent.

 

[jillio]

could be, in which case, how is your statement helping anyone?
You are not explaining what it is you think I've lost and should be grieving and have only suggested that our early adoption of ASL is somehow a negative or an indication of some great damage we will do to Li-Li.

On the other hand, perhaps you are projecting on me your own sense of disappointment in some expectation you had for yorself.

I thought it was well explained, not just in my posts, but in the honest sharing of other members regarding the topic. What one looses is the intanglible. The expectation, the idea. Intanglible to be sure, but a loss all the same. And dealing with any loss requires the experience of grief.

I have suggested nothing of the kind. If you will re-read my post and take from it the intent there, you will see that I actually suggested that your early use of ASL was a postive step in an innate effort to deal with your grief. That cannot be damaging at all, but is, in fact, a benefit to both you and your daughter.

No projection going on here. I recognized, identified, admitted, and dealt with my grief over the intangible many years ago. I understand that my grief is something related to me alone, and has no bearing on my child (now an adult) at all. He lost nothing. He was profoundly deaf from birth. It is his normality. What I lost was the idea that my child was hearing, as deafness never entered my mind. Nothing changed for him at the time of diagnosis. However, many things changed for me. Just as it was necessary for me to let go of the child I thought I had (hearing) in order to fully accept the child I had (deaf), it is necessary for all parents to let go of this intangible belief, expectation, or whatever you choose to call it. A parent spends nine months in gestation with a child they never consider as deaf. Dreams and expectations, desires, fantasies for the future, are all constructed from that parent's perspective...a hearing perspective. None of those thoughts are ever, remotely, connected to the possibility of deafness. And they do not become connected until the parent is made to face the reality of the diagnosis by having those words spoken. That is what one must grieve for and let go of if one is to move forward in the healthiest and most productive way possible. The grief process, as applied to adjustment of disability, is a process of reconsideration, or re-framing, of reconstruction. It in no way implies that you are less than satisfied with the child you have, but is, a very healthy way of not just being satisfied with the child you have, but seeing the unique ways in which the experience of parenting a deaf child is an enriching and educating experience. Admitting to the negative reaction simply frees one up to fully experience all of the positive. Again, it is not a reflection on how you feel about your child. It is a reflection of what your perspective is and always has been...hearing.

 

[jillio]

Thanks. That's why I think deafdyke's suggestion about some counselling as a part of the bill mentioned in the OP, is excellent.

I agree. It should be a part of the bill, if this bill is to be passed at all. Currently, the group I facilitate for parents is so full that we are unable to take any new parents until space opens up. I find this sad. The need is there, and we need to address it.

 

[jillio]

Interesting. Ragtime you say? What do you play? I mean is it for you, the whole family, or just for Li's benefit?

Please, let's stick to the topic.

 

[kokonut]

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

ASL or any sign language is fine if the parent finds it beneficial and advantageous to use for their deaf/hh child.

 

[jillio]

ASL or any sign language is fine if the parent finds it beneficial and advantageous to use for their deaf/hh child.

What about if the child finds it advantageous to have it used?

 

[faire_jour]

I thought it was well explained, not just in my posts, but in the honest sharing of other members regarding the topic. What one looses is the intanglible. The expectation, the idea. Intanglible to be sure, but a loss all the same. And dealing with any loss requires the experience of grief.

I have suggested nothing of the kind. If you will re-read my post and take from it the intent there, you will see that I actually suggested that your early use of ASL was a postive step in an innate effort to deal with your grief. That cannot be damaging at all, but is, in fact, a benefit to both you and your daughter.

No projection going on here. I recognized, identified, admitted, and dealt with my grief over the intangible many years ago. I understand that my grief is something related to me alone, and has no bearing on my child (now an adult) at all. He lost nothing. He was profoundly deaf from birth. It is his normality. What I lost was the idea that my child was hearing, as deafness never entered my mind. Nothing changed for him at the time of diagnosis. However, many things changed for me. Just as it was necessary for me to let go of the child I thought I had (hearing) in order to fully accept the child I had (deaf), it is necessary for all parents to let go of this intangible belief, expectation, or whatever you choose to call it. A parent spends nine months in gestation with a child they never consider as deaf. Dreams and expectations, desires, fantasies for the future, are all constructed from that parent's perspective...a hearing perspective. None of those thoughts are ever, remotely, connected to the possibility of deafness. And they do not become connected until the parent is made to face the reality of the diagnosis by having those words spoken. That is what one must grieve for and let go of if one is to move forward in the healthiest and most productive way possible. The grief process, as applied to adjustment of disability, is a process of reconsideration, or re-framing, of reconstruction. It in no way implies that you are less than satisfied with the child you have, but is, a very healthy way of not just being satisfied with the child you have, but seeing the unique ways in which the experience of parenting a deaf child is an enriching and educating experience. Admitting to the negative reaction simply frees one up to fully experience all of the positive. Again, it is not a reflection on how you feel about your child. It is a reflection of what your perspective is and always has been...hearing.

But isn't it possible that there are parents that, for whatever reason, do not have preconceived expectations for their child, so there is no need to change them when the child is found to have a hearing loss? We never even expected to have a child to bring home, so we greived over her death, not her hearing loss.

 

[jillio]

But isn't it possible that there are parents that, for whatever reason, do not have preconceived expectations for their child, so there is no need to change them when the child is found to have a hearing loss? We never even expected to have a child to bring home, so we greived over her death, not her hearing loss.

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?

 

[faire_jour]

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?

When we left the hospital we were told that she would probably be multiply handicapped. We were given a prognosis that included severe brain damage. We hoped that she would turn out ok, but no, we never expected it.

 

[jillio]

When we left the hospital we were told that she would probably be multiply handicapped. We were given a prognosis that included severe brain damage. We hoped that she would turn out ok, but no, we never expected it.

Hope, expectation...same thing. But that really doesn't answer my question. When you took her home from the hospital, did you see her as a deaf child? And when you discovered that the prognosis was not as severe as believed initially, did you not have to do some reconstruction and reframing?

Please don't get defensive in your replies. We have actually opened the way for a productive discussion here.

 

[faire_jour]

Hope, expectation...same thing. But that really doesn't answer my question. When you took her home from the hospital, did you see her as a deaf child? And when you discovered that the prognosis was not as severe as believed initially, did you not have to do some reconstruction and reframing?

Please don't get defensive in your replies. We have actually opened the way for a productive discussion here.

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.