Low Expectations

[rockdrummer]

In my quest to expose my own son to fluent signers, I sought out the deaf community. Was it easy? Not really. I had no idea where to find them, as until my son was diagnosed, I wasn't even aware that a deaf community existed. The easiest place to start is a phone book. Open it and look for an agency that serves deaf needs. They are located all over the U.S. and all major cities have numerous agencies. Smaller towns,as well, usually have at least one organization that serves deaf needs, and can be used as a reference for finding individuals within the deaf community. It's not as overwhelming an undertaking as you seem to think it is.

Should I start at page one of the phone book. Eaisest place? The phone book? I dont believe it's overwhelming, just difficult.

I put the first responsibility on the medical community that has first contact with the parents during the diagnostic process. They, above all, should be informing parents of ALL OPTIONS, and not just those treatments deemed medically appropriate for remediating what they consider to be pathology.

You can put the responsibility on them all you want but the reality is that they are medical professionals and as such they view things pathalogicaly. It's their nature. I would not expect anything from them to include deaf culture other than a minimal glossing over the topic. Perhaps a better solution is to mandate by law that they (the doctors) inform an deaf culture organization the names and contact information of all children diagnosed with deafness. Then the deaf culture organization can then reach out to the parents and give them the cultural perspective. At least then the parent is getting the pathalogical and cultural views along with options.

The second responsibility lies with the parent, and I' sorry if you think I am being too hard on parents. I live by the philosophy that a parent has the responsibility to do whatever it takes to attend to their child's needs, be that child hearing, deaf, autistic, blind, developmentally delayed or any combination thereof.

Yes, unless the parent chooses an oral route or CI or views deafness as pathalogical. Then I don't believe you would agree with how they are attending to their childs needs even though they believe they are doing what is in the best interest of their child.

Once the parents have been provided with accurate information regarding ALL OPTIONS, it is the parent's responsibility to reach out. No one else is responsible for doing it for them. The deaf community can't approach the hearing parent...therefore, it is up to the hearing parent to approach the deaf community.

I agree that once parents are provided with accurate information they can make informed decisions. But remember that a major part of the problem is that they are NOT being provided with accurate information regarding ALL OPTIONS. But yes in a perfect world where this is occuring I would agree with your comment. In reality, it's not happening.

I'm sorry, but I don't buy all of the excuses that parents give...no deaf community close, no place to learn sign language, no time to devote to pursuing social interaction with other deaf, etc. If a deaf communioty is available an hours drive away,then once a week you put your butt in the car and drive to where they are with your child. Once a week contact can do wonders. Sign language courses are offered everywhere. If you can't find one within a reasonable distance, there are online courses. If you don't think you have time for interaction, then cut out another activity in order to find the time. I did it for my son, and there is nothing special about me. I did it while a widowed single parent, which means I had no one to take up my slack at home, while working a full time job to support myself and my son. Was it easy? Hell, no. Was my son's future worth it? Hell, yes. He is my child, and it was my responsibility as his parent to do whatever I had to do to insure that his needs...physical, social, psychological, educational, and linguistic...were met.

The very reason that I returned to school to work on my Ph.D. was that, in the course of raising my own son, I saw far too many parents with far too many excuses and far too many children suffering as a result. It is not just the deaf child that suffers from lowered expectations. Hearing parents get away with too many excuses just because they are not held to the standards of responsibility that they should be.

Yeah, I get all of that and would only say that each situation has to be looked into before casting judgment. Hell, I am not in a position to judge anyone regardless. I see both sides taking the easy way out at times. I think it's human nature to try to take the easy way out.

From what you say, you did well for your son and good for you. Just keep in mind that what worked for you is not going to work for everyone else. Each child has different needs and each parent and family is surrounded by different circumstances. That said I do agree that some parents don't put forth what I would consider to be "enough effort" I try my best to not be one of them.

I also try my best to balance my life, my marrige, my children and my career in such a way that we can all remain sane and happy. While my son's deafness has become a large part of that balancing act, it's not the only consideration. I can't quit my job, make my wife quit her job, yank my teenage daughter out of school, sell my house, all to move to podunk just because they have a deaf school in their town. If I were alone with just my son, it would be a completely different story. For me the reality is that I carry a heavy load and many depend on me. I don't want to let any of them down.

 

[loml]

rockdrummer - Well done!

 

[jillio]

Should I start at page one of the phone book. Eaisest place? The phone book? I dont believe it's overwhelming, just difficult.

Try the yellow pages. Look for "Deaf". You will find organizations. You then dial the number, and state the purpose for your call. Come on, rd. You're a bright man. It is not that difficult.

You can put the responsibility on them all you want but the reality is that they are medical professionals and as such they view things pathalogicaly. It's their nature. I would not expect anything from them to include deaf culture other than a minimal glossing over the topic. Perhaps a better solution is to mandate by law that they (the doctors) inform an deaf culture organization the names and contact information of all children diagnosed with deafness. Then the deaf culture organization can then reach out to the parents and give them the cultural perspective. At least then the parent is getting the pathalogical and cultural views along with options.
It is no their nature. It is the way they are taught. That is where the change needs to be instituted; in the way that deafness is addressed in med school.

A doctor cannot simply release the information regarding patient to a deaf organization. That is a breach of confidentiality, and he would be liable to a law suit for doing so. That is why they need to provide the information regarding deaf community to the parent. That is why it is the parent's responsibility to reach out to the deaf community. It is the result of the nature of the relationship between medical professional and patient. And I still don't understand how you can lay the imepetus for reaching out on the deaf community. They are not respsonsible for that child, the parent is. The way you want it to work is that as soon as a deaf child is diagnosed, the parent just sits back and lets the deaf community play a game of hide and seek with the family. That is like allowing yourself to starve to death with food in the refridgerator a few feet away because no one showed up to feed it to you.
Yes, unless the parent chooses an oral route or CI or views deafness as pathalogical. Then I don't believe you would agree with how they are attending to their childs needs even though they believe they are doing what is in the best interest of their child.
Empirical research has shown that unless a deaf child's needs for visual language are being attended to, all of their needs are not being addressed. That is not opinion, either mine, or the researchers. It is supported fact.
I agree that once parents are provided with accurate information they can make informed decisions. But remember that a major part of the problem is that they are NOT being provided with accurate information regarding ALL OPTIONS. But yes in a perfect world where this is occuring I would agree with your comment. In reality, it's not happening.

And I have said that over and over again. It is the medical community's responsibility, as first contact following diagnosis, to provide parents with the resources to gather all of the information. I know it's not happening, and that is why I continue to speak out about the negligence in duty to inform. You keep asking me for solutions, and every time I offer one, you try to defer responsibility again. If it's not happening, then do something about it. That is what I am attempting to do. Instead of disucssing over and over again what is not happening, start speaking out about what needs to happen. And don't accept any of those "it's not my job, man" excuses.
Yeah, I get all of that and would only say that each situation has to be looked into before casting judgment. Hell, I am not in a position to judge anyone regardless. I see both sides taking the easy way out at times. I think it's human nature to try to take the easy way out.

Of course it is. But easiest is not always what is best. And if you choose not to undertake a paln of action simply because it is too difficult, then you also relinquish your right to bitch about the results you get.
From what you say, you did well for your son and good for you. Just keep in mind that what worked for you is not going to work for everyone else. Each child has different needs and each parent and family is surrounded by different circumstances. That said I do agree that some parents don't put forth what I would consider to be "enough effort" I try my best to not be one of them.

I never acccused you of being one of those parents. But that line about not working for everyone else is just another one of those "yes, but" justifications. People need ot spend more time takinga postivie action and less time coming up with excuses for not taking action.

I also try my best to balance my life, my marrige, my children and my career in such a way that we can all remain sane and happy. While my son's deafness has become a large part of that balancing act, it's not the only consideration. I can't quit my job, make my wife quit her job, yank my teenage daughter out of school, sell my house, all to move to podunk just because they have a deaf school in their town. If I were alone with just my son, it would be a completely different story. For me the reality is that I carry a heavy load and many depend on me. I don't want to let any of them down.

I guess that would depend on where your priorities lie. I saw it this way...I could stay where I was, keep my job, keep my house, and my son would have a second rate education. Or, I could quit my job, sell my house, move to podunk, and improve the educational envirnment for my son. I can get a new job, I can get a new house, I can make the adjustments necessary. What I gave up could be replaced. But had I sacrificed my son's education for the convenience of not relocating, I could not replace that lost opportunity. Hearing children can adjust to another school environment. Jobs can be found, houses can be sold and purchased. That can take place anywhere. But one has to be more selective when looking for educational services for a deaf child. You can't get those anywhere. So the question is, where are your priorities. If one is willing to accpet second rate education for the convenience of not moving and not having to find another job, then I guess that is the decision you make. But don't say that you made the decision because you had to. You made the decision because you chose to. There is a big difference.

 

[Tousi]

After you have read MZena's blog, please read the comments below it, ESPECIALLY Beth's comment (post # 3) because it relates to the point being made here regarding the medical community. We should find out how Massachusetts pulled that off.

Mishka Zena » Blog Archive » Why Is ASL A Dirty Word?

 

[Grummer]

I guess that would depend on where your priorities lie. I saw it this way...I could stay where I was, keep my job, keep my house, and my son would have a second rate education. Or, I could quit my job, sell my house, move to podunk, and improve the educational envirnment for my son. I can get a new job, I can get a new house, I can make the adjustments necessary. What I gave up could be replaced. But had I sacrificed my son's education for the convenience of not relocating, I could not replace that lost opportunity. Hearing children can adjust to another school environment. Jobs can be found, houses can be sold and purchased. That can take place anywhere. But one has to be more selective when looking for educational services for a deaf child. You can't get those anywhere. So the question is, where are your priorities. If one is willing to accpet second rate education for the convenience of not moving and not having to find another job, then I guess that is the decision you make. But don't say that you made the decision because you had to. You made the decision because you chose to. There is a big difference.

dead on Jillo !



that's damn right, parents dont think about the 'disabiilty factor' which deaf childern/adults are subjected to, or rather bluntly put , they're too selfish, it took me a long time to understand (that i do now and I really feels this too for myself as it became apparent they were right all along (the deaf community). I understand when they (deafs) say hearing people are selfish, its nto dumb, its not a crying out loud hapless behaviour or a senseless rant at all. It is a genuine response to the oppression, an expression of the true experiential recount.

Jillio points out that self scarfice is not as significant as the effort which deaf/Deaf people has to put in to get past their (educational , etc) barriers! those sort of scarfices have small effects albeit really important implications in the long run for the well-being of all deaf persons concerned.

So,in the nutshell deaf people needs to say "Get out of the way hardcore audists"; its time for US to really prove the significance of the deaf world's contribution to society in general, we have a way and we need to DO IT, however IMO advocacy tactics needs abit of an overhaul.

there is no doubt there is a hard truth in Jillios' words; But don't say that you made the decision because you had to. You made the decision because you chose to. There is a big difference

Absolutely!, its like choosing to ignore your gay flatmate because 'you had to' be seen straight, when it is in fact you should be 'sticking up for your gay freind' since in heart nothing will change them, and its also your loyalty to them is questioned. It is the same disheartening which can entice mistrust ,anger and negativity while not to mention much of the impact to that person goes suppressed often not by their choice but by the pressure of social conventions which is at root, are of evil and ignorance in nature.

I used the gay analogy to bypass this deaf issue as being irrelevant becuase i KNOW you would not think its 'all the same for all deafs, while it is, as does the same to all gay people being given cold shoulders or forced to experience misplaced favourism.

 

[rockdrummer]

Try the yellow pages. Look for "Deaf". You will find organizations. You then dial the number, and state the purpose for your call. Come on, rd. You're a bright man. It is not that difficult.

I was kidding about the phone book. I can't remember the last time I picked up "the phone book". I would conduct an online search before going to the phone book.

It is no their nature. It is the way they are taught. That is where the change needs to be instituted; in the way that deafness is addressed in med school.

I didn’t mean it as in human nature. I mean in how they approach their jobs

A doctor cannot simply release the information regarding patient to a deaf organization. That is a breach of confidentiality, and he would be liable to a law suit for doing so. That is why they need to provide the information regarding deaf community to the parent. That is why it is the parent's responsibility to reach out to the deaf community. It is the result of the nature of the relationship between medical professional and patient.

A parent can’t reach out to something they don’t even know exists. And yes, I realize the legalities of the issue. It was merely an idea off the top of my head that I thought might be a way of ensuring the parents are presented with both sides fairly. Admittedly, pie in the sky.

And I still don't understand how you can lay the imepetus for reaching out on the deaf community. They are not respsonsible for that child, the parent is. The way you want it to work is that as soon as a deaf child is diagnosed, the parent just sits back and lets the deaf community play a game of hide and seek with the family. That is like allowing yourself to starve to death with food in the refridgerator a few feet away because no one showed up to feed it to you.

I’m not laying anything on anyone. Those are your words. I’m not really sure where sitting back playing hide and seek, or your analogy about staving comes in. I think you are reading way to much into it. As I mentioned above, my idea about a deaf culture group reaching out was merely a suggestion that might address the problem. Nothing more, nothing less.

Empirical research has shown that unless a deaf child's needs for visual language are being attended to, all of their needs are not being addressed. That is not opinion, either mine, or the researchers. It is supported fact.

The point is that a misinformed hearing parent of a newly diagnosed deaf child isn’t even aware of what that child’s needs are. Should they just believe the doctor or should they do more research? I know the answer for me. Assuming they do the research, what are they gonna find? They are going to find century old controversy surrounding how to raise and educate a deaf child. The will also find many methods and approaches all with their own success and horror stores. They will also find folks promoting specific methods and others that support a toolbox approach. What they won’t find is consensus. They won’t find consensus from the doctors, or the educators or even from the deaf community for that matter. I have heard from deaf people that were educated in various methods of which some succeeded and some failed. Some loved it and some hated it. How can one be comfortable making a decision that has such a profound affect on their child in such a climate? For me, that is the overwhelming part.

And I have said that over and over again. It is the medical community's responsibility, as first contact following diagnosis, to provide parents with the resources to gather all of the information. I know it's not happening, and that is why I continue to speak out about the negligence in duty to inform.

That speaking out can only be done by someone that has the knowledge of what needs to be accomplished. Good for you for stepping up.

You keep asking me for solutions, and every time I offer one, you try to defer responsibility again. If it's not happening, then do something about it. That is what I am attempting to do. Instead of disucssing over and over again what is not happening, start speaking out about what needs to happen. And don't accept any of those "it's not my job, man" excuses.

If you feel I am trying to defer responsibility then you are missing my point. What I am saying is that this can’t be done by someone that doesn’t even know what needs to be accomplished. It has to come from someone that knows the issues and the system well enough to come up with realistic ideas on how to change things.

Of course it is. But easiest is not always what is best. And if you choose not to undertake a paln of action simply because it is too difficult, then you also relinquish your right to bitch about the results you get.

I agree. I don’t think it’s the lack of a plan of action as much as it is what’s contained in the plan.

I never acccused you of being one of those parents. But that line about not working for everyone else is just another one of those "yes, but" justifications. People need ot spend more time takinga postivie action and less time coming up with excuses for not taking action. .

I never said you accused me of anything. It’s just me wearing my mind on my sleeve. We will have to agree to disagree on what works for everyone. My opinion is based on my personal research, experience and what I hear from deaf people on this board and in life. It’s a mixed bag out there and you can’t deny the success stories from all camps. It’s hard to ignore deaf adults that say they are successful and wouldn’t change a thing about how they were brought up and educated. It’s also hard to ignore the failure stories, which come from all camps. Those facts are what re-enforce my belief that one way is not going to work for everyone. That’s not a “yes but” justification. It’s an observation of real world facts.

I guess that would depend on where your priorities lie. I saw it this way...I could stay where I was, keep my job, keep my house, and my son would have a second rate education. Or, I could quit my job, sell my house, move to podunk, and improve the educational envirnment for my son. I can get a new job, I can get a new house, I can make the adjustments necessary. What I gave up could be replaced. But had I sacrificed my son's education for the convenience of not relocating, I could not replace that lost opportunity. Hearing children can adjust to another school environment. Jobs can be found, houses can be sold and purchased. That can take place anywhere. But one has to be more selective when looking for educational services for a deaf child. You can't get those anywhere. So the question is, where are your priorities. If one is willing to accpet second rate education for the convenience of not moving and not having to find another job, then I guess that is the decision you make. But don't say that you made the decision because you had to. You made the decision because you chose to. There is a big difference

Please be careful with your words to me. My utmost priorities are with the well being of my children, so please don’t suggest otherwise. I’m honestly happy that things worked out for you and your son. That doesn’t mean that in order for a deaf child to be happy and successful they must follow your path. And if one doesn’t follow your path that doesn’t mean there priorities are in the wrong place or that they are exposing their child to a second rate education. The bottom line is that there are no guarantees. I never said I made any decisions because I had to. The only things in life I have to do are stay white and die. Everything else is by choice.

 

[jillio]

After you have read MZena's blog, please read the comments below it, ESPECIALLY Beth's comment (post # 3) because it relates to the point being made here regarding the medical community. We should find out how Massachusetts pulled that off.

Mishka Zena » Blog Archive » Why Is ASL A Dirty Word?

Thanks for that link, Tousi. Very interesting read.

 

[jillio]

I was kidding about the phone book. I can't remember the last time I picked up "the phone book". I would conduct an online search before going to the phone book.

I didn’t mean it as in human nature. I mean in how they approach their jobs



A parent can’t reach out to something they don’t even know exists. And yes, I realize the legalities of the issue. It was merely an idea off the top of my head that I thought might be a way of ensuring the parents are presented with both sides fairly. Admittedly, pie in the sky.


I’m not laying anything on anyone. Those are your words. I’m not really sure where sitting back playing hide and seek, or your analogy about staving comes in. I think you are reading way to much into it. As I mentioned above, my idea about a deaf culture group reaching out was merely a suggestion that might address the problem. Nothing more, nothing less.


The point is that a misinformed hearing parent of a newly diagnosed deaf child isn’t even aware of what that child’s needs are. Should they just believe the doctor or should they do more research? I know the answer for me. Assuming they do the research, what are they gonna find? They are going to find century old controversy surrounding how to raise and educate a deaf child. The will also find many methods and approaches all with their own success and horror stores. They will also find folks promoting specific methods and others that support a toolbox approach. What they won’t find is consensus. They won’t find consensus from the doctors, or the educators or even from the deaf community for that matter. I have heard from deaf people that were educated in various methods of which some succeeded and some failed. Some loved it and some hated it. How can one be comfortable making a decision that has such a profound affect on their child in such a climate? For me, that is the overwhelming part.



That speaking out can only be done by someone that has the knowledge of what needs to be accomplished. Good for you for stepping up.


If you feel I am trying to defer responsibility then you are missing my point. What I am saying is that this can’t be done by someone that doesn’t even know what needs to be accomplished. It has to come from someone that knows the issues and the system well enough to come up with realistic ideas on how to change things.


I agree. I don’t think it’s the lack of a plan of action as much as it is what’s contained in the plan.


I never said you accused me of anything. It’s just me wearing my mind on my sleeve. We will have to agree to disagree on what works for everyone. My opinion is based on my personal research, experience and what I hear from deaf people on this board and in life. It’s a mixed bag out there and you can’t deny the success stories from all camps. It’s hard to ignore deaf adults that say they are successful and wouldn’t change a thing about how they were brought up and educated. It’s also hard to ignore the failure stories, which come from all camps. Those facts are what re-enforce my belief that one way is not going to work for everyone. That’s not a “yes but” justification. It’s an observation of real world facts.



Please be careful with your words to me. My utmost priorities are with the well being of my children, so please don’t suggest otherwise. I’m honestly happy that things worked out for you and your son. That doesn’t mean that in order for a deaf child to be happy and successful they must follow your path. And if one doesn’t follow your path that doesn’t mean there priorities are in the wrong place or that they are exposing their child to a second rate education. The bottom line is that there are no guarantees. I never said I made any decisions because I had to. The only things in life I have to do are stay white and die. Everything else is by choice.

The "you" in my wording was the collective "you", not the personal "you".

 

[loml]

rockdrummer - *tipping hat*

 

[jillio]

rockdrummer - *tipping hat*

And your solution to the state of affairs would be......let me guess........CUED SPEECH! Now there a solution! Using something that hasn't worked to improve a system that isn't working. Very logical approach.

 

[rockdrummer]

The "you" in my wording was the collective "you", not the personal "you".

No worries. I don't always choose the best words either. Cheers!

 

[jillio]

No worries. I don't always choose the best words either. Cheers!

Glad we had the opportunity to set that straight.

 

[rockdrummer]

After you have read MZena's blog, please read the comments below it, ESPECIALLY Beth's comment (post # 3) because it relates to the point being made here regarding the medical community. We should find out how Massachusetts pulled that off.

Mishka Zena » Blog Archive » Why Is ASL A Dirty Word?

Thanks Tousi. It's to bad that Beth's experience is unique.