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Unread 10-12-2011, 12:04 AM   #301 (permalink)
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The Deaf are surprisingly more aware than hearies can comprehend.

If someone said that to me I'd whack them and tell them to get it together.
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Unread 10-12-2011, 12:23 AM   #302 (permalink)
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It's tough seeing other "special needs" kids look so much more normal than yours. I understand completely. While I'm crazy for my own son, there are too many days where I wish he could feed himself/walk better/tell me what he feels. But he can't. His hearing is fine, BTW.

It took me a couple of years before I realized that wasn't going to be a fix. Nothing could be done to give us the magic to make him catch up and be normal like the children everyone else seems to have so easily.

Next time put on your best sarcastic/incredulous face and tell the dolts "Oh my god - you're absolutely right! I'm going to tell the doctors to call you from now on... since you know it all."

That aught to shut their gobs.
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Unread 10-12-2011, 11:01 PM   #303 (permalink)
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Quote:
Originally Posted by mbrek View Post
It's tough seeing other "special needs" kids look so much more normal than yours. I understand completely. While I'm crazy for my own son, there are too many days where I wish he could feed himself/walk better/tell me what he feels. But he can't. His hearing is fine, BTW.

It took me a couple of years before I realized that wasn't going to be a fix. Nothing could be done to give us the magic to make him catch up and be normal like the children everyone else seems to have so easily.
Its great you get it many dont.
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Unread 11-15-2011, 12:26 AM   #304 (permalink)
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well, frankie is doing pretty good! he is 32 pounds now, and 35 inches long..his hearing loss is the same, but he is not wanting to wear his hearing aids AT ALL now. its a real struggle to get him to keep them in. we saw the audiologist the other day, and she turned them down to see if it would help..we had an unaided booth test while we were there, and she said that he had almost normal responses the first time around, which she thought was odd. i dont know if it was because he knew the toys were going to light up or what. we go back soon for new molds.
as for everything else..he is just further and further behind as he gets older..when i joined, back in june..he was behind but now hes really behind..i am still swaddling him, he still eats baby food that i feed him..he doesnt understand how to use a spoon, although he did bring me a fork and cried for baby food, which was awesome! he will also take his glasses off and attempt to put them back on sometimes. he still cant use his hands, but he is playing with a wider variety of things now..he still can only use basic baby toys but he loves them. we took him to the deaf preschool for a day, but they had a hard time with him..they said it took 3 people to change him, which is stupid..and they couldnt get him to eat. i dont think hes quite ready. he still cant talk, but he is very vocal now..he loves to yell and squeal!





these are pictures of him from the other day..the blotchiness is from an allergic reaction that pops up from time to time!
i am hoping that he does ok next month..we are going to the local deaf childrens christmas party!!!!!
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Unread 11-15-2011, 01:28 AM   #305 (permalink)
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The Christmas party sounds like fun!

Have you been signing much with/around him? Is he not currently enrolled in school?
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Unread 11-15-2011, 12:25 PM   #306 (permalink)
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we are still trying to show him signs and he is completely oblivious..even the director at the deaf preschool said there is no way he is ready to learn any of that yet..he went for a day but he had a rough four hours..he couldnt eat because they only have meal times at a specific time, and he takes forever to drink his bottle..and he wasnt really able to play with the other kids because he simply doesn't know how to play yet. we are going to try again in several months and see how it goes. he still hasnt learned how to point or wave yet either..but he can get into my rocking chair with his blanket! its so odd that hes able to walk at his age level but everything else is almost a year behind, it seems. it was sad when we picked him up..they had him wrapped up in his blanket, rocking him..he had been screaming for a while and had almost cried himself to sleep.. i felt horrible! it seems like any deviation to what his every day routine is messes him up.
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Unread 11-15-2011, 12:35 PM   #307 (permalink)
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when did he start preschool. He must be shocked in a new enviroment new schedule and new faces. I wonder if you are allowed to stay there for 4 hours to see if they need some feedback from you if your son gets upset or something???
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Unread 11-15-2011, 12:47 PM   #308 (permalink)
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when did he start preschool. He must be shocked in a new enviroment new schedule and new faces. I wonder if you are allowed to stay there for 4 hours to see if they need some feedback from you if your son gets upset or something???
I think she implied he is not in school.
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Unread 11-15-2011, 01:51 PM   #309 (permalink)
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no, hes not in school. it was just too much for him, and i dont think the director wouldve let him carry on like that anyways.
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Unread 11-15-2011, 02:35 PM   #310 (permalink)
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no, hes not in school. it was just too much for him, and i dont think the director wouldve let him carry on like that anyways.
Im sorry. Can someone from school come over at your place instead of?
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Unread 11-15-2011, 03:40 PM   #311 (permalink)
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How about a home tutor? Would the school district cover something like that? This is an area I am unfamiliar with; sorry if that is a dumb question.

Edit: Sorry, FF -- I see you posted nearly the same question! I didn't read all the way down.
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Unread 11-15-2011, 04:18 PM   #312 (permalink)
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well, frankie is doing pretty good! he is 32 pounds now, and 35 inches long..his hearing loss is the same, but he is not wanting to wear his hearing aids AT ALL now. its a real struggle to get him to keep them in. we saw the audiologist the other day, and she turned them down to see if it would help..we had an unaided booth test while we were there, and she said that he had almost normal responses the first time around, which she thought was odd. i dont know if it was because he knew the toys were going to light up or what. we go back soon for new molds.
as for everything else..he is just further and further behind as he gets older..when i joined, back in june..he was behind but now hes really behind..i am still swaddling him, he still eats baby food that i feed him..he doesnt understand how to use a spoon, although he did bring me a fork and cried for baby food, which was awesome! he will also take his glasses off and attempt to put them back on sometimes. he still cant use his hands, but he is playing with a wider variety of things now..he still can only use basic baby toys but he loves them. we took him to the deaf preschool for a day, but they had a hard time with him..they said it took 3 people to change him, which is stupid..and they couldnt get him to eat. i dont think hes quite ready. he still cant talk, but he is very vocal now..he loves to yell and squeal!
http://i6.photobucket.com/albums/y206/marmielake/f3.jpg


http://i6.photobucket.com/albums/y206/marmielake/f1.jpg

these are pictures of him from the other day..the blotchiness is from an allergic reaction that pops up from time to time!
i am hoping that he does ok next month..we are going to the local deaf childrens christmas party!!!!!
♥ the spongebob shirt, so cute! I had a spongebob t-shirt when I was little though!
another thing, my mom and I both have glasses that looks like Frankie's too

http://www.google.com/url?sa=t&rct=j...xewAUoXVyDltYA
these will help keep his hearing aids on and he'll thank U later
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Unread 11-15-2011, 05:23 PM   #313 (permalink)
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How about a home tutor? Would the school district cover something like that? This is an area I am unfamiliar with; sorry if that is a dumb question.

Edit: Sorry, FF -- I see you posted nearly the same question! I didn't read all the way down.
this is a private school thing, not through the public..the problem is that hes not able to mimic people that well, and he cant use his hands properly..we have to overcome that to get to the point of learning sign language.
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Unread 11-15-2011, 07:16 PM   #314 (permalink)
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this is a private school thing, not through the public..the problem is that hes not able to mimic people that well, and he cant use his hands properly..we have to overcome that to get to the point of learning sign language.
Perhaps expressively, but receptive language is another story... The challenge is if you wait for him to expressively be able to sign, he will lose out on valuable time that would allow him to acquire language.
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Unread 11-15-2011, 09:00 PM   #315 (permalink)
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I'm sure Frankie's mom knows if her son is receptive to language. For those of use with non-verbal children you learn to look for cues and responses in their faces or eyes. My own son never showed any ability that he knew what was said. I would have been elated if he looked at me when I said "where's mama?"... but it never registered.
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Unread 11-15-2011, 09:37 PM   #316 (permalink)
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I'm sure Frankie's mom knows if her son is receptive to language. For those of use with non-verbal children you learn to look for cues and responses in their faces or eyes. My own son never showed any ability that he knew what was said. I would have been elated if he looked at me when I said "where's mama?"... but it never registered.
I understand your point- but your son is hearing, correct? All I'm advocating for is for him to have the opportunity to develop language and the ability to communicate. A DHH child isn't going to acquire appropriate language by overhearing their family talking...
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Unread 11-15-2011, 10:39 PM   #317 (permalink)
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Yes, my son is hearing. But you notice a lot from a child's face if they can understand, even if they can't hear. That's my point, is all. :-)
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Unread 11-15-2011, 11:54 PM   #318 (permalink)
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Yes, my son is hearing. But you notice a lot from a child's face if they can understand, even if they can't hear. That's my point, is all. :-)
Absolutely... I get what your saying...
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Unread 11-16-2011, 12:55 AM   #319 (permalink)
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I understand your point- but your son is hearing, correct? All I'm advocating for is for him to have the opportunity to develop language and the ability to communicate. A DHH child isn't going to acquire appropriate language by overhearing their family talking...
Yes, but the thing is....I wonder if he could do something like ASL for receptive language, and augmentive and alternative communcation for expressive language.
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Unread 11-16-2011, 08:14 AM   #320 (permalink)
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there are those comm. boards and other devices that adults w/quadraplegia or severe CP <fine motor issues> use...with oral control....am wondering if there was anything at a very young level that could be set up for Frankie? Perhaps an children's OT/PT at a major teaching hospital in the region could come up with something?
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Unread 11-16-2011, 11:42 AM   #321 (permalink)
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he has absolutely zero understanding of anything being said to him..it is so strange. i can say "look at the dog" or "wheres daddy" and he just gives me a blank stare. the only thing he does to communicate is cry when he wants me to hold him and he makes this weird static sound when his dad comes in the room. those are the absolutely only 2 things he will do..as for sign language, he cant manipulate his hands at all..in fact, he has developed a habit of clenching his fingers in a weird twisted way and keeping them like that..the drs dont have an answer for that either! but he cant point or wave yet still so i dont know. we have a communication board that we got from our local equipment exchange thing, but he cant figure it out..hes not recognizing pictures for what they are. but hes just not getting things yet..if i tell him to come here, or try to wave him over..he just looks at me. i still have to get him out of bed most of the time..rarely will he come over for me to pick him up, if i lower the side and hold my arms out, he just sits there and looks at me..i have to get him up myself..when i change his clothes, he doesnt know to push his arm through the shirt, he just sits there and waits for me to be done..makes me feel bad that he has so little understanding! we have a speech therapy evaluation coming up, so we will see what they think.
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Unread 11-16-2011, 12:57 PM   #322 (permalink)
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Yes, but the thing is....I wonder if he could do something like ASL for receptive language, and augmentive and alternative communcation for expressive language.
I would say that's a good idea... And maybe eventually he will be able to expressively sign for himself. If he receptively doesn't have access though, the expressive language will be incredibly difficult.
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Unread 11-16-2011, 01:41 PM   #323 (permalink)
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Frankiesmom -- I just want to say that you are one of my heros. I really admire you.
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Unread 11-16-2011, 01:42 PM   #324 (permalink)
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what do you mean by receptively having access..im being dense today!
he sees signs, and we watch the signing videos..but it doesnt register..its like he is zoned out and not really comprehending, if that makes sense. nothing grabs his attention.
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Unread 11-16-2011, 02:29 PM   #325 (permalink)
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what do you mean by receptively having access..im being dense today!
he sees signs, and we watch the signing videos..but it doesnt register..its like he is zoned out and not really comprehending, if that makes sense. nothing grabs his attention.
I believe she means that even if he doesn't seem to be getting it, it doesn't mean you shouldn't provide it, because if you don't provide it, it's impossible for him to get it.

Like if a kid is never given English receptively (through other people or text), they'll never use it expressively (talking/writing) because they've never even experienced it.
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Unread 11-16-2011, 03:01 PM   #326 (permalink)
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oh well, of course and trust me, i spend all day trying to stimulate any bit of desire to learn or communicate, even though there is no reciprocation. ive not written him off as a "lost cause" or anything..its just stating facts that he is not understanding things at this point.
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Unread 11-16-2011, 10:06 PM   #327 (permalink)
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oh well, of course and trust me, i spend all day trying to stimulate any bit of desire to learn or communicate, even though there is no reciprocation. ive not written him off as a "lost cause" or anything..its just stating facts that he is not understanding things at this point.
It may come.....he's still young. I wonder......have you contacted any Dept. of Developmental disabilty resources? I think it's hard b/c your son isn't mild, but yet it doesn't sound like he's profound or severe......
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Unread 11-16-2011, 10:11 PM   #328 (permalink)
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You know, I would contact the state's Blind School too. You may be able to find resources for kids who are a wee bit more affected. It almost sounds like he's deaf-blind without the blind in terms of functioning. The thing is...a lot of deaf-blind kids are also multihandicapped and may have nereological issues like your son. I do know that shel90 and bajagirl have said that they have seen kids who are more significently mentally affected in deaf-blind programs. Even Perkins admits deaf kids with significent developmental issues.
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Unread 11-16-2011, 10:12 PM   #329 (permalink)
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yep, i did..they sent me respite vouchers and information on different groups. they said hes "moderately retarded" if that makes sense..i hope he will learn..tomorrow, we are going to check out the sign language classes and talk to this lady..apparently the other director has a kid like frank.
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Unread 11-16-2011, 11:11 PM   #330 (permalink)
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How old is he now?
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