Are parents getting the info they need?

[shel90]

The parents who are on the boarderline want to connect with anything that will help them to understand something they don't understand.

On the other hand, Haven't you had parents who have done the research and done the planning? They want what is best for their child. That is as difficult too. I might not agree with it, but I also can't say anything either. And they have very strong views and opinions.

Oh I have had parents who have done research and realized that it wont do their children harm by getting the best of both worlds instead of just restricting them to one or the other. Those parents ended up becoming fluent in ASL within 5 years of their children's diagnosis and as a result, their children have a stronger language foundation. Yes, even some of them have CIs.

I understand about wanting to connect with something they understand but in my experience what happened was that they get tooo fixated on my speech skills and ability to communicate with hearing people (mostly on an one or two on one basis) that they forget to see the whole picture.

 

[vallee]

Oh I have had parents who have done research and realized that it wont do their children harm by getting the best of both worlds instead of just restricting them to one or the other. Those parents ended up becoming fluent in ASL within 5 years of their children's diagnosis and as a result, their children have a stronger language foundation. Yes, even some of them have CIs.

I understand about wanting to connect with something they understand but in my experience what happened was that they get tooo fixated on my speech skills and ability to communicate with hearing people (mostly on an one or two on one basis) that they forget to see the whole picture.

Another thing that parents tend to think is either with HA or CI that the decision was easy. They see the outside, the speech skills and all that. They don't see the years and years of decision making. My only wish for parents is whatever program they choice that they make a commitement as a family. They include everyone. They do not isolate the child and they accept the child was a valuable member of the family. Very important they don't try to fix, HA and CI are assistance tools, they don't fix or cure. They are resources and if they choose to use them, work with the child on care, responsiblity and limitations of these devices. I am very much for the family to work together.

 

[jillio]

If I recommend that to the parents, they the school system can be charged with the fees. We are limited in what we can say and recommend. The school psy tried to point them in the right direct and the "main man." came down on her.

I didn't mean that you were to recommend it. Of course, it is out of the limits of the child's IEP. But perhaps the doctor will do it. Or if they contact an agency like BVR to receive help with CI expenses, I can promise you after an initial interview, it would be recommended. You can, however, pass on the name of a good therapist, or someone who conducts parenting classes without making a documented recommendation. And the "main man" needs to be reported to the state board of education for that action.

 

[vallee]

I am off to clean the house. The holidays are around the corner and just started the holiday break. My house looks like a war zone. Shel enjoyed the posting.

 

[jillio]

But isnt getting the child implanted going to require a lot of work from them for the child to be successful with it, right?

Yea, we are limited as educators cuz it is the parents who have the power over what educational setting their children should be placed in. That's why we get so more older deaf students referred to our school than the younger ones. The trend is to place them in programs that can make them as normal as possible and many of them end up falling so far behind. I wish I can do more to prevent this problem.

And that is exactly why this all cannot be left to the teachers, but must include the other professionals that the parents come in contact with. I think the article stressed the importance of the influence of the professionals that have first contact following diagnosis. And that is why these professionals need to provide all of the information, and not just that which supports their personal philosophy. And ENTs should be referring parents out for counseling services across the board rather than just expecting them to sort through the most difficult time of their life on their own.

 

[jillio]

The mom and dad talked to me, and because I "sound normal" they believe that their child will too. This was back in August. I told them how much hard work it was. All they saw was I was activated and I sound good. They see that with students with HAs too. That did not make him perfect so why not try CIs.

We have a fantatic hoh teacher and she straight forward. I think the child would benefit with her class. She does have 3 CI students and they all use a BiBi program. They are self contained and inclusion.

Our guidance teacher meet with them too and they don't see a problem.

These parents are seeing only what they want to see. They have yet to accept their child's deafness.

 

[jillio]

I have had that experience of parents using me as their "poster child" of a normal deaf person after they heard my speech skills. That's why I stopped using my oral skills at meetings and just rely heavily on terps. I got tired of the meetings getting turned around to be about my oral skills and how I was able to speak so well and lipread so well. The meetings were about THEIR child not about me.

Excellent solution.

 

[jillio]

The parents who are on the boarderline want to connect with anything that will help them to understand something they don't understand.

On the other hand, Haven't you had parents who have done the research and done the planning? They want what is best for their child. That is as difficult too. I might not agree with it, but I also can't say anything either. And they have very strong views and opinions.

Exactly. The parent that vallee is having to deal with right now won't benefit from anything until they reach the point where they accept their child's deafness and start listening. I do hope that happens soon, because it is the child that is suffering. In counseling, we refer to these clients as "Yes,buts." No matter how many people try to point them in the right direction and show them where their thinking is illogical, they will continue to say, "Yes, but...." They are impossible to deal with. Unfortunately, these are the cases you just have to let go of, and it is one of the most difficult things in the world to do, because you feel like you are deserting the child in the process.

 

[jillio]

Another thing that parents tend to think is either with HA or CI that the decision was easy. They see the outside, the speech skills and all that. They don't see the years and years of decision making. My only wish for parents is whatever program they choice that they make a commitement as a family. They include everyone. They do not isolate the child and they accept the child was a valuable member of the family. Very important they don't try to fix, HA and CI are assistance tools, they don't fix or cure. They are resources and if they choose to use them, work with the child on care, responsiblity and limitations of these devices. I am very much for the family to work together.

Excellent advise.

 

[LTHFAdvocate]

I think if reimbursement was available, the bias would automatically be reduced because the number of providers participating in the process presenting a wider variety of options would increase, and it would also increase the ability of those outside of the direct medical/audiology professions to participate.

Sheri

While I agree that time spent in consultation regarding communication choice and methodolgy should be reimbursed jsut as a medical consultation is reimbursed, payment will not decrease the potential for bias. And these parents see bias in the provider as one of the main problems in getting appropriate information.

Yes, this article is 7 years old. However, given some of the comments posted recently by parents regarding lack of information, etc. I do believe it is still quite relevent.

 

[rick48]

Banned for a day.

 

[jillio]

you're personally attacking members rather than expressing your opinion on the topic itself, this is NOT tolerated.


Ooops I'm sorry, I forgot about the double standard employed by the moderators on AD, never mind.

You, yourself opened the door. I guess you expect that you can insult others and they are so impressed with you that they will not defend themselves and their friends. Go away. You are not welcome in this thread.

 

[Cloggy]

Just a little off-topic, but do want to mention it...

Rick was banned for "personally attacking members rather than expressing your opinion on the topic itself"....

Strange, as I reported the same thing yesterday in another thread, (a member joined the topic and got insulted straight away) and nothing happened to the member that attacked the other member.

The thread is closed now and the insult has been removed......

 

[flip]

Just a little off-topic, but do want to mention it...

Rick was banned for "personally attacking members rather than expressing your opinion on the topic itself"....

Strange, as I reported the same thing yesterday in another thread, (a member joined the topic and got insulted straight away) and nothing happened to the member that attacked the other member.

The thread is closed now and the insult has been removed......

*cough*

That was a very subjective version of what happened. We all know moderators are striving for objectivity when going that far as deleting posts and banning members. I know myself how hard it can be.

Sometimes, when you are walking in the oposite direction of everyone else, it actually can be that you are heading in the wrong direction.

 

[deafdyke]

What advise would you give parents? What ideas would you give them? What resources would you give them? So if a parent is reading this thread, what do you want them to learn?

I would encourage them to go with a full toolbox approach initially, so that the child can decide which tools they want to use. I would encourage networking with schools for the deaf, as well as oral programs.
Vallee, abt the kid with multiple medical problems..........I would talk to the parents of that kid, and tell them that a lot of times with multiple medical syndromes, speech tends to not be that sophistiated. Apraxia is very common in dhh kids overall. Maybe if their kid learned ASL, then it might turn out that their kid isn't as effected as everyone thinks.

 

[Cloggy]

*cough*

That was a very subjective version of what happened. We all know moderators are striving for objectivity when going that far as deleting posts and banning members. I know myself how hard it can be.

Sometimes, when you are walking in the oposite direction of everyone else, it actually can be that you are heading in the wrong direction.

*cough* *cough* :sure:

 

[jag]

If I recommend that to the parents, they the school system can be charged with the fees. We are limited in what we can say and recommend. The school psy tried to point them in the right direct and the "main man." came down on her.

Vallee if they'd like to speak (email) with someone who's child with DS was placed in an ASL program and how it helped said child I will give you my email. Just private message me. I know how difficult it is to make decisions and how sometimes contacting someone who has made that decision can help. My child is still delayed and always will be. But she does understand more and her comprehension of spoken language is better to.

 

[vallee]

Vallee if they'd like to speak (email) with someone who's child with DS was placed in an ASL program and how it helped said child I will give you my email. Just private message me. I know how difficult it is to make decisions and how sometimes contacting someone who has made that decision can help. My child is still delayed and always will be. But she does understand more and her comprehension of spoken language is better to.

Please send e-mail or you can send a PM to me.

 

[shel90]

I would encourage them to go with a full toolbox approach initially, so that the child can decide which tools they want to use. I would encourage networking with schools for the deaf, as well as oral programs.
Vallee, abt the kid with multiple medical problems..........I would talk to the parents of that kid, and tell them that a lot of times with multiple medical syndromes, speech tends to not be that sophistiated. Apraxia is very common in dhh kids overall. Maybe if their kid learned ASL, then it might turn out that their kid isn't as effected as everyone thinks.

Yea, so true and it is kinda ironic when you think about the numerous of hearing children with additional needs being put in signing programs so yet the deaf ones are still being pushed to develop speech skills. I guess when people hear the word "deaf or deafness", the first thoughts are related to communication and speech skills?

 

[Cloggy]

....... I guess when people hear the word "deaf or deafness", the first thoughts are related to communication and speech skills?

Shouldn't they be?
Isn't that what all the discussion is about: Making sure the deaf child will get all the possibilities to communicate.?