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Unread 09-25-2011, 10:44 PM   #151 (permalink)
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you're blood type doesn't ever change in your lifetime however some people are universal donors and some are universal receivers but that still doesn't change the coding for your blood just as a side note...but I would look into the RH-testing results and such because that CAN be a problem sometimes with diagnosing problems in babies and children
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Unread 09-25-2011, 10:46 PM   #152 (permalink)
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they didnt even test me with frank, or my last 2 before him...i am definitely asking tomorrow because at least this would make some sense. because i cant find a single thing that could be the cause of this..i have researched this for months now and we have had tons of tests..and nothing. i know it just happens, but how often is a kid deaf and mentally retarded for no reason whatsoever? it just cant be that common.
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Unread 09-25-2011, 10:48 PM   #153 (permalink)
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it DOES make me feel better! it beats throwing stuff at my idiot neighbor! well, not really but its legal!
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Unread 09-25-2011, 10:54 PM   #154 (permalink)
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hey, it beats the "dickface" sign i made for him a couple of years ago...(my husband made me take it down though)
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Unread 09-25-2011, 11:45 PM   #155 (permalink)
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I've developed relationships with a number of children and their families where the child is "multi-handicapped". For example deafness/autism and deafness/Down Sundrome etc. Given that deafness is a low incidence "disability" chances are you aren't going to run into a person who is deaf on a regular basis unless you're in a community with a large deaf population. Following that line of thinking, it's even less common to run into a person or child with deafness and a secondary disability.

So no, it's not super common. But there are many people like Frankie who exist in this world and grow to become adults who contribute to society. Sure, they may contribute in different ways, but they contribute nonetheless.

Try to focus on the things you have control over, and slowly work your way up the ladder. Two things you have complete control over at this point are providing him with access to language through sign, and ensuring that he is getting the nutrition he needs to allow his body (and brain) to continue developing accordingly. You do have some control. Embrace it, and know that slowly but surely you'll be able to add to the list of ways you can enable Frankie to make progress. You have to have faith in him. You have to have faith in yourself. You can do it. He can too. You just have to give it time.

Last edited by CSign; 09-25-2011 at 11:46 PM. Reason: Typo
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Unread 09-25-2011, 11:55 PM   #156 (permalink)
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I've developed relationships with a number of children and their families where the child is "multi-handicapped". For example deafness/autism and deafness/Down Sundrome etc. Given that deafness is a low incidence "disability" chances are you aren't going to run into a person who is deaf on a regular basis unless you're in a community with a large deaf population. Following that line of thinking, it's even less common to run into a person or child with deafness and a secondary disability.

So no, it's not super common. But there are many people like Frankie who exist in this world and grow to become adults who contribute to society. Sure, they may contribute in different ways, but they contribute nonetheless.

Try to focus on the things you have control over, and slowly work your way up the ladder. Two things you have complete control over at this point are providing him with access to language through sign, and ensuring that he is getting the nutrition he needs to allow his body (and brain) to continue developing accordingly. You do have some control. Embrace it, and know that slowly but surely you'll be able to add to the list of ways you can enable Frankie to make progress. You have to have faith in him. You have to have faith in yourself. You can do it. He can too. You just have to give it time.
Just a heads up: You correlated deafness to these words: handicap and disability.
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Unread 09-26-2011, 12:01 AM   #157 (permalink)
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Just a heads up: You correlated deafness to these words: handicap and disability.
At least she put those words in quote marks.
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Unread 09-26-2011, 12:09 AM   #158 (permalink)
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i think in frankies case, being deaf IS disabling to him..it is definitely making things more challenging for him. if he just had hearing issues though, pff..this wouldnt even be an issue.
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Unread 09-26-2011, 12:13 AM   #159 (permalink)
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they didnt even test me with frank, or my last 2 before him...i am definitely asking tomorrow because at least this would make some sense. because i cant find a single thing that could be the cause of this..i have researched this for months now and we have had tons of tests..and nothing. i know it just happens, but how often is a kid deaf and mentally retarded for no reason whatsoever? it just cant be that common.
I'm with you! Especially since you say he has a bunch of other things. I would contact the Oklahoma School for the Deaf, and see if maybe they might be able to point you towards some answers. They may also be able to give you some info and resources about dhh multihandicapped kids. I hear you. I can't remmy if I've mentioend this, but I have a syndrome that can and does cause mental handicap. I wasn't told by the docs that I had it, until I was 16!?!?!
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Unread 09-26-2011, 12:31 AM   #160 (permalink)
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Just a heads up: You correlated deafness to these words: handicap and disability.


I am talking about the medical/educational perspective when I state, "multi-handicapped". I put the quotes around it because I don't particularly like it, but that is how it's classified.

I don't view deafness as a disability.

I was addressing the fact that there are others out there who have other things going on besides being deaf. I was letting Frankiesmom know that I've met a number of children in similar positions to Frankie; and that he, and she are not alone.
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Unread 09-26-2011, 12:33 AM   #161 (permalink)
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i think in frankies case, being deaf IS disabling to him..it is definitely making things more challenging for him. if he just had hearing issues though, pff..this wouldnt even be an issue.
I guess what I'm trying to get across to you is that the hearing loss doesn't need to be an issue... There are ways to make his surroundings accesible to him... He can access language, just not in the way you are used to.
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Unread 09-26-2011, 03:14 PM   #162 (permalink)
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this is a for Frankiesmom
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Unread 09-26-2011, 03:34 PM   #163 (permalink)
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I guess what I'm trying to get across to you is that the hearing loss doesn't need to be an issue... There are ways to make his surroundings accesible to him... He can access language, just not in the way you are used to.
if he can gain the mental capacity, sure he can! but even if he cant, i know he can/will adapt somehow.
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Unread 09-26-2011, 03:51 PM   #164 (permalink)
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well, the dr says that its highly unlikely, because he wouldve had coagulation problems at birth..good point i suppose! i guess i am just grasping at anything that seems like a remote possibility at this point. he DID tell me though that it is perfectly fine for him to cry it out at night..so we will be starting that fairly soon.
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Unread 09-26-2011, 03:56 PM   #165 (permalink)
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you're blood type doesn't ever change in your lifetime however some people are universal donors and some are universal receivers but that still doesn't change the coding for your blood just as a side note...but I would look into the RH-testing results and such because that CAN be a problem sometimes with diagnosing problems in babies and children
Or somebody goofed with blood typing this time around and got two patients' blood mixed up.
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Unread 09-26-2011, 04:02 PM   #166 (permalink)
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The other thing I wondered is if FrankiesMom ever had a large blood transfusion. I could be totally wrong in my thinking, but I thought I'd heard before that can be enough to change blood types and such. True or no?
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Unread 09-26-2011, 04:21 PM   #167 (permalink)
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The other thing I wondered is if FrankiesMom ever had a large blood transfusion. I could be totally wrong in my thinking, but I thought I'd heard before that can be enough to change blood types and such. True or no?
Dunno but that doesn't seem likely.
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Unread 09-26-2011, 04:27 PM   #168 (permalink)
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The other thing I wondered is if FrankiesMom ever had a large blood transfusion. I could be totally wrong in my thinking, but I thought I'd heard before that can be enough to change blood types and such. True or no?
What if the lab goofed? That would explain it.

If one had a bone marrow transplant, the blood type will switch to the donor's type.
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Unread 09-26-2011, 04:47 PM   #169 (permalink)
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nope, no blood transfusions here..nothing at all.
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Unread 09-26-2011, 04:50 PM   #170 (permalink)
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I can't believe that an OB would 't perform a blood test. That's so elementary to the OB standard of medical care for a very long time. Is it possible that the OB performed the test but didn't point it out to you?
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Unread 09-26-2011, 06:24 PM   #171 (permalink)
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with frankie, they might have, i honestly dont remember. at any rate, it was just an unlikely guess..i just want something to fall in my lap and say "look, this is whats wrong!".
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Unread 09-26-2011, 06:27 PM   #172 (permalink)
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I wish that you could find the answers you want. Doctor suck at telling you about the tests they've done. They just say something like the blood work is fine.
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Unread 09-26-2011, 06:43 PM   #173 (permalink)
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with frankie, they might have, i honestly dont remember. at any rate, it was just an unlikely guess..i just want something to fall in my lap and say "look, this is whats wrong!".
That I can understand. Hang on..
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Unread 09-26-2011, 06:44 PM   #174 (permalink)
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The thing is, you may NEVER know exactly what caused his constellation of issues. What you may want to consider is looking at the greater picture... Does it REALLY matter what CAUSED this? Asking "why" questions can be SO draining. It may be more productive for you to concentrate on "What is.." and just go with what you know. You know he has delays. You know he has feeding issues. You know he has a hearing loss. Those things can be worked on, so he can have a comfortable life and THAT is what is important!

Sometimes, we waste time asking why when there really is no good answer to that question. I humbly ask you to concentrate on what is, and, maybe one day you'll know the why, but for now just place your energy into helping him the best way you can with what you know NOW.
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Unread 09-26-2011, 07:00 PM   #175 (permalink)
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She may be asking why, but it's clear that she is working on what can be done now (rather than before) and going forward.
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Unread 09-26-2011, 07:50 PM   #176 (permalink)
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The thing is, you may NEVER know exactly what caused his constellation of issues. What you may want to consider is looking at the greater picture... Does it REALLY matter what CAUSED this? Asking "why" questions can be SO draining. It may be more productive for you to concentrate on "What is.." and just go with what you know. You know he has delays. You know he has feeding issues. You know he has a hearing loss. Those things can be worked on, so he can have a comfortable life and THAT is what is important!

Sometimes, we waste time asking why when there really is no good answer to that question. I humbly ask you to concentrate on what is, and, maybe one day you'll know the why, but for now just place your energy into helping him the best way you can with what you know NOW.
I do somewhat agree with this, but on the other hand I think it might be good to know, simply b/c it's possible that the thing causing the mental handicap might be able to be treated somehow. In some cases it can be treated.
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Unread 09-26-2011, 08:07 PM   #177 (permalink)
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I am talking about the medical/educational perspective when I state, "multi-handicapped". I put the quotes around it because I don't particularly like it, but that is how it's classified.

I don't view deafness as a disability.

I was addressing the fact that there are others out there who have other things going on besides being deaf. I was letting Frankiesmom know that I've met a number of children in similar positions to Frankie; and that he, and she are not alone.
Yes. Deafness alone or with relatively mild mental handicap isn't nessarily a disabilty. But I do think it is when there's severe multi issues going on, it can be a disabilty. I wish there was a term for kids who while they have lots of issues, aren't nessarily severe or profoundly affected. I have multiple issues too, and it can confuse people, since they think severe or multi= one of those kids who is deaf, blind, and has severe/profound mental handicap and about a billion medical problems.
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Unread 09-26-2011, 09:10 PM   #178 (permalink)
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I do somewhat agree with this, but on the other hand I think it might be good to know, simply b/c it's possible that the thing causing the mental handicap might be able to be treated somehow. In some cases it can be treated.
OK. I take a slightly different view, but that's just me.
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Unread 09-27-2011, 12:27 AM   #179 (permalink)
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Or - the doctor could be sued, if it's really a blood compatibility issue and they didn't give you the appropriate shots, knowing your RH-negative status and your husband's positive status. That is the combination that is guaranteed to have compatibility issues in a pregnancy.
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Unread 09-27-2011, 03:01 AM   #180 (permalink)
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also, his audiogram has him right on the borderline of profound/severe. even yet, he is definitely getting something from his hearing aids and that is what is important..i dont think even the implant would "fix" him, and i just cant put him through a painful surgery on the chance that it could, even a little bit.
Oh, he could be like many of us here. I am profound/severe but I *feel* music and sounds. Frankie seems to *love* his music. Keep playing it and don't let those yahoo doctors tell you that he will *never* learn sign. Just because he isn't magically signing back to you does not mean that he isn't learning. It just might take awhile for him to reciprocate. One day he could just start signing.
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