Decision

[jillio]

Anyways...in your opinions, do these parents who blog only about their children's ears and mouths are explioting them?

In my opinion, yes. And not for the child's interest, as they will supposedly claim. It is for the sole interest of the parent. Shameful, IMO.

 

[jillio]

The only one I can think of is "Deaf Like Me" -- I have the book. There may be others?

Excellent book, but was written and published long after the father made the cultural connection. The daughter was but a toddler when she saw the deaf child that led to the claim: "Deaf like me!" Nor was the father taking credit for the journey, but gave full credit to the child for showing him, what he as a hearing person, had never considered. Additionally, books are a bit different than blogs. One has to actually actively seek out the book to read it. Blogs are open for anyone who has access to the net.

 

[posts from hell]

Yep; too many for my way of thinking.

Yup, met four over the weekend.

 

[jillio]

And you have?

Excellent point. And one the poster continually ignores.

 

[jillio]

I do know there are kids who will create blogs about their journeys or struggles with their HA's, CI's or hearing loss. If the child does it for themselves it is one thing, but a parent should recognize and think about making a private journey public.

Absolutely. When the kid creates the blog to discuss their first hand experience, it empowers them to take ownership of their deafness and their experiences. When a parent does it, they are attempting to take ownership of something that is not theirs.

 

[jillio]

Yup, met four over the weekend.

Damned shame that it continues. But not surprising, given some of the parental opinions expressed on this forum.

 

[AlleyCat]

Excellent book, but was written and published long after the father made the cultural connection. The daughter was but a toddler when she saw the deaf child that led to the claim: "Deaf like me!" Nor was the father taking credit for the journey, but gave full credit to the child for showing him, what he as a hearing person, had never considered. Additionally, books are a bit different than blogs. One has to actually actively seek out the book to read it. Blogs are open for anyone who has access to the net.

I think the point that was being made by some was about making a child's private journey public. As for Deaf Like Me, it was written when she had no say in what was written.

 

[jillio]

I think the point that was being made by some was about making a child's private journey public. As for Deaf Like Me, it was written when she had no say in what was written.

She was a minor when it was written and published to be sure, but I am not sure of the publication date. It could be that she had the opportunity to review the original version before it went to an editor and a publisher. I was just making the point that she was older than the age when the encounter occurred because books take some time to write, edit, publish, and hit the market. Blog posting is done in real time. It would be the difference between making public something about a 3 year old when the child is 3 and has no realization of what is going on, and publishing something about a 3 year old when the child is 10 and has the ability to provide feedback.

IDK, that point kind of makes a difference for me.

 

[faire_jour]

Wirelessly posted

her teacher found it on the self and read it to her class at csd, because they were too young to read it themselves.

 

[Oceanbreeze]

You're right. We're in agreement that therapies are necessary; especially when the kids are very young. But, I think part of the problem is that PARENTS take what the professionals say as GOSPEL and they are afraid to intervene on the kids behalf; even though the kid is, at this point, an older child who can now give input into how they feel about something. In MY case, my parents listened to me. They bucked the doctors who told them the PT, et el. was STILL necessary (never mind, I was now walking aided and there wasn't much more they could teach me in session ...). What MY parents did was simply go against the advice given. Here's the rub: there is always a consequence for it. My muscles tightened. I lost flexiblity. I lost muscle tone, ect and so on...So, yes, my body probably suffered. However, I gained social skills that I really didn't have before. I began making friends. I WAS happier OVER ALL. So, the sacrifice WAS worth it.

The point is there's sacrifices to every decision a parent of a disabled child makes. The PARENT has to decide if that sacrifice is worth it. I really DO believe, DD, that the parents of the past are a good bit of the problem. We need more parents who have the guts to do what is RIGHT for their kid. If that means continuing therapy and the kid seems to enjoy it, great, but IF that means that you pull back on therapy and just let the kid be a kid, then, parents SHOULD DO IT.[/QUOTE]

I agree with you. Parents should step in and advocate for their children. However, in defense of parents in the past and even today, they were/are conditioned to take the doctors/specialists word as gospel because too much emphasis is put on a piece of paper received after sitting in a classroom for years on end. There are some 'professionals' who are unable to apply their knowledge onto the practical field in real life situations. Parents in general have their child's best interest at heart and if they can take the 'baby out of the bath water' so to say, children today would have much better QOL.

...And, I agree with this. My Mom ran up against this when I was a baby and little girl. She learned the hard way. When I was first born and throughout the first year or so of my life, Mom followed the Dr's advice; to the TEE. I had a lot of procedures and things that weren't really necessary; alot of it for research purposes. Mom was young and didn't know any better. She just signed the consent form and watched in horror later when they'd come in and draw tubes of blood (or take skin samples) from a sick, sleeping baby. That first year of my life was hard on everyone; probably me most of all.

As I grew older, though, my parents learned to say no to the Dr's when they'd propose surgeries that weren't necessarily needed; but would, in theory, enhance my QOL. One Dr in particularly was very egotistical and wanted to perform a surgery on me that I DID NOT want (I was 11). At this point, I had input into what was done to me.

We discussed this surgery as a family and decided it wasn't in my best interest to have it done. I didn't want it. There were no guarantees it would work, and in actuality, this particular surgery could actually DIMINISH my quality of life. It was a battle. We eventually went to another hospital for my care as a result of this one Dr's stance that I should have the surgery and there was NOTHING ELSE that could help me. Really, Doc?

Anyway, long story short, parents NEED to advocate for their kids. And, sometimes that means doing things a bit beyond what is considered "normal" or expected.

 

[jillio]

Point confirmed. Someone without a specific interest in childhood deafness with generally not bother even opening a book about a deaf child. A book has to be sought out. A blog is open to anyone surfing the net. Pictures of the kid and all. Someone who simply has an interest in pics of young kids will check out a blog about a young kid, no matter what the blog is about. Especially when that blog contains "glamour" type photos of the young kid.

 

[posts from hell]

Point confirmed. Someone without a specific interest in childhood deafness with generally not bother even opening a book about a deaf child. A book has to be sought out. A blog is open to anyone surfing the net. Pictures of the kid and all. Someone who simply has an interest in pics of young kids will check out a blog about a young kid, no matter what the blog is about. Especially when that blog contains "glamour" type photos of the young kid.

it's sad when you can spokeo one person and pull up the pictures of their child not the parent alongside their address because of excessive blogs regarding the child...

 

[Oceanbreeze]

What I can't figure out is why do these parents feel the need to write about this?

 

[jillio]

it's sad when you can spokeo one person and pull up the pictures of their child not the parent alongside their address because of excessive blogs regarding the child...

Sad, indeed. And parents do not even think of the implications...all the while blaming the porn idustry for child molestation. Molestors can find things all over the net to satisfy their desires without ever visiting a pornographic site.

 

[jillio]

What I can't figure out is why do these parents feel the need to write about this?

Similar to Munchausens by Proxy. Attention seeking through their child's disability.

 

[AlleyCat]

She was a minor when it was written and published to be sure, but I am not sure of the publication date. It could be that she had the opportunity to review the original version before it went to an editor and a publisher. I was just making the point that she was older than the age when the encounter occurred because books take some time to write, edit, publish, and hit the market. Blog posting is done in real time. It would be the difference between making public something about a 3 year old when the child is 3 and has no realization of what is going on, and publishing something about a 3 year old when the child is 10 and has the ability to provide feedback.

IDK, that point kind of makes a difference for me.

Oh, I was not arguing anything. Just pointing out whatever "facts" I knew about the book (I put "facts" in quotes because I would have to go to storage to get the book out to know the exact publication date) -- my parents met the authors (the girl's parents) at a book signing and this was back in the 70's when the girl was still very young, so I do know it was published at an early age for her. The book I have was autographed by the authors. Anyways I get the point you are making about blogging in real time -- I had thought I understood the posts earlier were about posting about a child without their permission/realization/feedback. Which is what I was saying about this book.

 

[jillio]

Oh, I was not arguing anything. Just pointing out whatever "facts" I knew about the book (I put "facts" in quotes because I would have to go to storage to get the book out to know the exact publication date) -- my parents met the authors (the girl's parents) at a book signing and this was back in the 70's when the girl was still very young, so I do know it was published at an early age for her. The book I have was autographed by the authors. Anyways I get the point you are making about blogging in real time -- I had thought I understood the posts earlier were about posting about a child without their permission/realization/feedback. Which is what I was saying about this book.

I didn't think you were arguing, lol. I was just trying to clarify what I was saying about the difference in case someone didn't get the point I was making.

Wow, I wish I could have met the parents. I read the book early in my exposure to the deaf world, and it had such a huge impact on me. I remember thinking, "Here is a parent that thinks exactly like I do!" Unfortunately, I loaned my copy out several years ago, and never got it back.

 

[BecLak]

Wirelessly posted

You're right. We're in agreement that therapies are necessary; especially when the kids are very young. But, I think part of the problem is that PARENTS take what the professionals say as GOSPEL and they are afraid to intervene on the kids behalf; even though the kid is, at this point, an older child who can now give input into how they feel about something. In MY case, my parents listened to me. They bucked the doctors who told them the PT, et el. was STILL necessary (never mind, I was now walking aided and there wasn't much more they could teach me in session ...). What MY parents did was simply go against the advice given. Here's the rub: there is always a consequence for it. My muscles tightened. I lost flexiblity. I lost muscle tone, ect and so on...So, yes, my body probably suffered. However, I gained social skills that I really didn't have before. I began making friends. I WAS happier OVER ALL. So, the sacrifice WAS worth it.



The point is there's sacrifices to every decision a parent of a disabled child makes. The PARENT has to decide if that sacrifice is worth it. I really DO believe, DD, that the parents of the past are a good bit of the problem. We need more parents who have the guts to do what is RIGHT for their kid. If that means continuing therapy and the kid seems to enjoy it, great, but IF that means that you pull back on therapy and just let the kid be a kid, then, parents SHOULD DO IT.[/QUOTE]



I agree with you. Parents should step in and advocate for their children. However, in defense of parents in the past and even today, they were/are conditioned to take the doctors/specialists word as gospel because too much emphasis is put on a piece of paper received after sitting in a classroom for years on end. There are some 'professionals' who are unable to apply their knowledge onto the practical field in real life situations. Parents in general have their child's best interest at heart and if they can take the 'baby out of the bath water' so to say, children today would have much better QOL.

...And, I agree with this. My Mom ran up against this when I was a baby and little girl. She learned the hard way. When I was first born and throughout the first year or so of my life, Mom followed the Dr's advice; to the TEE. I had a lot of procedures and things that weren't really necessary; alot of it for research purposes. Mom was young and didn't know any better. She just signed the consent form and watched in horror later when they'd come in and draw tubes of blood (or take skin samples) from a sick, sleeping baby. That first year of my life was hard on everyone; probably me most of all.



As I grew older, though, my parents learned to say no to the Dr's when they'd propose surgeries that weren't necessarily needed; but would, in theory, enhance my QOL. One Dr in particularly was very egotistical and wanted to perform a surgery on me that I DID NOT want (I was 11). At this point, I had input into what was done to me.



We discussed this surgery as a family and decided it wasn't in my best interest to have it done. I didn't want it. There were no guarantees it would work, and in actuality, this particular surgery could actually DIMINISH my quality of life. It was a battle. We eventually went to another hospital for my care as a result of this one Dr's stance that I should have the surgery and there was NOTHING ELSE that could help me. Really, Doc?



Anyway, long story short, parents NEED to advocate for their kids. And, sometimes that means doing things a bit beyond what is considered "normal" or expected.

Yes it is so true. Throughout the years there has been a lot of 'breakthroughs' in the medical fields a lot of them helpful and successful such as in stories like 'Lorenso's Oil' etc. But there are many, many experimental cases that went wrong and/or were unnecessary and the effects of these on the families involved are totally disregarded. The public generally are led to believed that research is either accomplished in libraries or on labrats! It is time for the public to stop being duped into believing EVERYTHING they are told.

 

[Bebonang]

Wirelessly posted

Yes it is so true. Throughout the years there has been a lot of 'breakthroughs' in the medical fields a lot of them helpful and successful such as in stories like 'Lorenso's Oil' etc. But there are many, many experimental cases that went wrong and/or were unnecessary and the effects of these on the families involved are totally disregarded. The public generally are led to believed that research is either accomplished in libraries or on labrats! It is time for the public to stop being duped into believing EVERYTHING they are told.

 

[Oceanbreeze]

Wirelessly posted

Yes it is so true. Throughout the years there has been a lot of 'breakthroughs' in the medical fields a lot of them helpful and successful such as in stories like 'Lorenso's Oil' etc. But there are many, many experimental cases that went wrong and/or were unnecessary and the effects of these on the families involved are totally disregarded. The public generally are led to believed that research is either accomplished in libraries or on labrats! It is time for the public to stop being duped into believing EVERYTHING they are told.

Well, there was some things that they did that actually saved my life. But, I agree with you. The thing is, though, as long as the parent gives consent, it can be done. As I said, my Mom was young (19), so she truly didn't know any better. She grew up with me in a lot of ways. As she matured, she found courage and started asking questions and being that Mom that every doctor hated! lol