California Bill AB 2027

[WeeBeastie]

Maybe it's because my daughter nearly died that I knew that being deaf was no big deal. We were literally told that we needed to make her funeral arrangements, but then she didn't die. Then we were told, "she is surely brain dead." But then they did the EEG, and she wasn't. Then they told us that she would be profoundly handicapped, that she would never walk or talk, and again, they were wrong. We had been through the very worst, so deaf was no problem at all.

What a horrifying ordeal to go through. *hugs*

For us, the hearing loss was the 'worst'... not that it's the worst thing that could have happened, but it was the most unexpected and we were absolutely unprepared for it. After a picture perfect pregnancy and delivery, this was completely out of the blue, but then again, my daughter is the first deaf person I've ever known.

 

[faire_jour]

What a horrifying ordeal to go through. *hugs*

For us, the hearing loss was the 'worst'... not that it's the worst thing that could have happened, but it was the most unexpected and we were absolutely unprepared for it. After a picture perfect pregnancy and delivery, this was completely out of the blue, but then again, my daughter is the first deaf person I've ever known.

And that is fine for you, but for someone to say that I am in denial, or trying to "fix" my daughter is very offensive. Just because one person reacts by greiving, does not mean that I or Grendel have to.

 

[kokonut]

Are you saying that, because I felt grief, I am not a "determined, loving and understanding mother"?

I wasn't even talking to you or about you. I was responding to F_J's comment.

 

[WeeBeastie]

And that is fine for you, but for someone to say that I am in denial, or trying to "fix" my daughter is very offensive. Just because one person reacts by greiving, does not mean that I or Grendel have to.

I'm sorry people have thought/said things like that, but it is definitely not my view on it.

Judging people for an emotional reaction, or lack there of, is presumptuous and rude.

 

[A]

And that is fine for you, but for someone to say that I am in denial, or trying to "fix" my daughter is very offensive. Just because one person reacts by greiving, does not mean that I or Grendel have to.

It's very rare for parent to do what Culturally Deaf do... leave them as deaf and use ASL. To them, making them hearing is fixing deafness. Even I think so, because for years I tried to fix myself to fit in the hearing society. Fixing or curing is all depend on how one see it. And as a deaf person I do see it that way. I wouldn't take it as a offense if you feel you made a right choice. I don't think you are in denial, though.. the only time I think a person is in denial is when their daughter want to be part of the deaf community and use sign language and they tell her no. Or Their daughter is frustrated communication method with them and feel isolated, and they won't learn ASL.

 

[kokonut]

I think it's nobody business in here to tell parents of deaf/hh kids that they are in denial.

 

[A]

ok.. Then I will say MY MOTHER WAS DENIAL.

 

[kokonut]

My mother wasn't. She did the best she could under the circumstances.

 

[A]

Probably because you were fine. Denial is when someone knows something is wrong but refused to face it or deal with it. Mom knew we were having communication issues, but she didn't want to do anything about it. She wanted to keep doing things her way.

 

[kokonut]

Probably because I was fine? What do you mean by that?

 

[A]

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

 

[deafdyke]

most parents whom I have met or encountered arent like your mom. Most of them get stuck in the grieving or denial stage.

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!

Then they told us that she would be profoundly handicapped, that she would never walk or talk, and again, they were wrong. We had been through the very worst, so deaf was no problem at all.

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]

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?

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]

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

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

 

[GrendelQ]

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

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.

 

[shel90]

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.

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.

 

[A]

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.

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

 

[shel90]

It's very rare for parent to do what Culturally Deaf do... leave them as deaf and use ASL. To them, making them hearing is fixing deafness. Even I think so, because for years I tried to fix myself to fit in the hearing society. Fixing or curing is all depend on how one see it. And as a deaf person I do see it that way. I wouldn't take it as a offense if you feel you made a right choice. I don't think you are in denial, though.. the only time I think a person is in denial is when their daughter want to be part of the deaf community and use sign language and they tell her no. Or Their daughter is frustrated communication method with them and feel isolated, and they won't learn ASL.

 

[GrendelQ]

It's very rare for parent to do what Culturally Deaf do... leave them as deaf and use ASL.

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.