update on frankie

frankiesmom said:
well, his audiologist isnt even sure if he will learn sign language, at least for several years, and that honestly is ok too. i just dont think it would do much good because he can hear with his hearing aids, but to get his attention, i have to crank whatever hes watching/listening to full volume for him to notice..i just dont think he would get the full benefit from it and it would just confuse and scare him. i just cant believe what a big deal it is..even from people that dont even have kids with hearing loss or anything going on..busybodies. also, one of my asshole neighbors last night made a dig at him..i guess she doesnt like the new signs. we were sitting outside, and some guy drove by, so she stood up and yelled as loud as she could "slooow down!!" and looked over at us..pff. shes always had an attitude..takes a big woman to pick on a disabled kid i guess!
Click to expand...

She is a low life! Any human who does these thing to child without full faculties is useless as a life. Just my opinion.:giggle:

I want to repeat to you that he may not hear speech recognition but might hear sounds. I only hear music if it is really loud and when I say 'hear' it is the bass and drums pounding away through my body and not my ears and not the words. Maybe the reason Frankie responds to music is because of the rythm that I felt in my body. Maybe he just feels the music in his body if it is loud enough?
 
frankiesmom said:
i liked his comment of how i got my way and didnt have to pay for it though...i still cant believe someone would say that.
ive never experienced this sort of behavior before though, this whole attitude against a disabled child..i would never have thought adults could be like this. children, yes because kids are jerks for the most part, but adults know better.
Click to expand...

Welcome to *our* world...and now Frankies. :roll:
 
its pretty damn amazing..i figured people would be falling all over themselves to help a disabled child/person, but some people act as if its a special treat or something.
at any rate, we saw the neurologist and he also thinks he is autistic and mentally retarded..he says that he doesnt have any signs of any brain issues and that it just sometimes happens. he put it completely different of course, but he said that based on his weird and absolute LOVE of any sort of lights, his wheel spinning, his head tilt and hand thing, and his oral aversion point to it. i put it off to him just being a little bit odd! maybe he really is autistic..but he said that the mental retardation and hearing loss are sort of exacerbating the situation, but that the hearing loss is definitely not the cause. he says that he has lots of deaf child patients who cant hear anything, but they show ways of communicating and emotion, and he said frank lacks that ability. i dont know, maybe he does. it just seems like everyone thinks their kid is autistic! im sure a lot of you have met someone with an absolute jerk of a kid that you know is perfectly fine, and the mom has self diagnosed the little hellion as being autistic, when hes clearly not.. i just dont want people to think that i am like that. of course, i dont think i have to worry about that because frank clearly has some issues going on. i had to grit my teeth when the dr threw out the "at least hes happy" line..i know he meant well and all but it doesn't make this ok at all.
at any rate, at least he DOES respond to music and sounds, and it does make him happy.(i totally said basically the same thing the dr said!!)
 
Sounds like best thing to do is just try to keep him happy and occupied. Try to teach him language in case he is able to learn those but just will take time. Keep doing that till he gets older and maybe able to process more information and see if things improve for him mentenally(sp).
 
I will second SecretBlend. Keep him happy and as healthy as you can. Work with him with some kind of language be it ASL or speech or both. We already know you love him more than life itself, so I don't have to tell you that. You never know, he just may amaze you down the road with all that he's retains, but doesn't show.
 
frankiesmom said:
its pretty damn amazing..i figured people would be falling all over themselves to help a disabled child/person, but some people act as if its a special treat or something.
at any rate, we saw the neurologist and he also thinks he is autistic and mentally retarded..he says that he doesnt have any signs of any brain issues and that it just sometimes happens. he put it completely different of course, but he said that based on his weird and absolute LOVE of any sort of lights, his wheel spinning, his head tilt and hand thing, and his oral aversion point to it. i put it off to him just being a little bit odd! maybe he really is autistic..but he said that the mental retardation and hearing loss are sort of exacerbating the situation, but that the hearing loss is definitely not the cause. he says that he has lots of deaf child patients who cant hear anything, but they show ways of communicating and emotion, and he said frank lacks that ability. i dont know, maybe he does. it just seems like everyone thinks their kid is autistic! im sure a lot of you have met someone with an absolute jerk of a kid that you know is perfectly fine, and the mom has self diagnosed the little hellion as being autistic, when hes clearly not.. i just dont want people to think that i am like that. of course, i dont think i have to worry about that because frank clearly has some issues going on. i had to grit my teeth when the dr threw out the "at least hes happy" line..i know he meant well and all but it doesn't make this ok at all.
at any rate, at least he DOES respond to music and sounds, and it does make him happy.(i totally said basically the same thing the dr said!!)
Click to expand...

I wonder if the nero was saying that he was more PDD-NOS and classfiying that as autistim. One of the things that annoys me is that autism seems to be the flavor of the month...So any obvious nereological issues are classfied as autism. There's dead on autism yes, but all severe nereo issues aren't nessarily autism.
 
exactly why i am being hesitant..but no, he said autism, now his developmental dr said the ppd-nos AND classic autism but again, shes selling autism books on the side. i just dont know..on one hand, he does have a lot of signs, but on the other hand, he doesnt. hes not really in his own world, he just doesnt know how to play..the dr said that hes not really liking to be cuddled, he likes the repetitiveness of being patted and rocked..thats not true at all because he gets very happy and excited over it. but yes, it IS the flavor of the month, which is why i just cant go with it 100 percent. i just think hes quirky and unique. and the wheel spinning thing..hes not trying to soothe himself when he does it because he really gets excited over that too, and lights..he will sit and crow his little head off over the lights on the computer, so hes not "gazing" at them. pfff. who knows?
 
I feel you are doing everything you can for Frankie. :) I hope the Doctors can decide and agree on Frankies diagnosis soon so you can get some closure.
 
Whatever he gets labeled, Frankie will progress and enjoy life. Maybe not in the same way that "normal" people do, but in his own way. That doesn't have any less value.
 
frankiesmom said:
exactly why i am being hesitant..but no, he said autism, now his developmental dr said the ppd-nos AND classic autism but again, shes selling autism books on the side. i just dont know..on one hand, he does have a lot of signs, but on the other hand, he doesnt. hes not really in his own world, he just doesnt know how to play..the dr said that hes not really liking to be cuddled, he likes the repetitiveness of being patted and rocked..thats not true at all because he gets very happy and excited over it. but yes, it IS the flavor of the month, which is why i just cant go with it 100 percent. i just think hes quirky and unique. and the wheel spinning thing..hes not trying to soothe himself when he does it because he really gets excited over that too, and lights..he will sit and crow his little head off over the lights on the computer, so hes not "gazing" at them. pfff. who knows?
Click to expand...

Yes, I TOTALLY see what you mean. He's not exactly NT, but neither does he sound dead on autistic. ....I really think he might have a rare thing that the docs are missing.... I wonder.......are there any children's hosipitals afflicated with a really good teaching hosptial in your state? It's possible you're being given the attitude you're given b/c the docs have no clue either. My parents got the same attitude when I was little too....and we were in BOSTON!
 
i dont think any of them have any more ideas than i do. in fact, his regular dr even said so. there arent any teaching hospitals other than the one he got his feeding tube from, and they dont specialize in anything. i just dont know..
but..he got his special bed tonight!!! it is huge, because well, hes a baby..he loves it so far, and since its padded completely all the way around, no more bumping his head or getting his arms/legs caught!!! yay! and a sweet friend on facebook messaged me to tell me she is holding a fundraiser to help us get his adaptive stroller, and i just about died! even if it doesnt pan out..how sweet is THAT??? so many caring people, even if there are assholes in the world!
 
frankiesmom said:
i dont think any of them have any more ideas than i do. in fact, his regular dr even said so. there arent any teaching hospitals other than the one he got his feeding tube from, and they dont specialize in anything. i just dont know..
but..he got his special bed tonight!!! it is huge, because well, hes a baby..he loves it so far, and since its padded completely all the way around, no more bumping his head or getting his arms/legs caught!!! yay! and a sweet friend on facebook messaged me to tell me she is holding a fundraiser to help us get his adaptive stroller, and i just about died! even if it doesnt pan out..how sweet is THAT??? so many caring people, even if there are assholes in the world!
Click to expand...

That is really sweet about your friend raising money for an adaptive stroller! I bet if more people knew about Frankie you could get more help . Have you tried a center of independent living to see if they know who could help with the cost of the adaptive stroller ? The bed sound great!
 
the bed is awesome! the owner of sleepsafe bed donated it to him!
we have a program that helps pay for stuff like that..but the waiting list is 9-15 years!
worse comes to worse, i will juggle some bills, its only 450, thank god! our insurance is dragging its feet big time on doing anything it seems!
 
because when seated, he leans all the way to the right, and he also has a nasty habit of flinging himself backwards and forwards, with no thought to his own safety..so unnerving. the one i am trying to get looks like a stroller..the one his insurance might pay for looks like a wheelchair, which we definitely dont want because he CAN walk, but not very far, and then the whole falling thing. i have a good setup for now though..i have his reclined all the way back, and i stuffed a pillow in it, and ive wrapped a baby quilt around the tray thing in the front!
 
frankiesmom said:
because when seated, he leans all the way to the right, and he also has a nasty habit of flinging himself backwards and forwards, with no thought to his own safety..so unnerving. the one i am trying to get looks like a stroller..the one his insurance might pay for looks like a wheelchair, which we definitely dont want because he CAN walk, but not very far, and then the whole falling thing. i have a good setup for now though..i have his reclined all the way back, and i stuffed a pillow in it, and ive wrapped a baby quilt around the tray thing in the front!
Click to expand...

Love the creativity :P
 
frankiesmom said:
the bed is awesome! the owner of sleepsafe bed donated it to him!
we have a program that helps pay for stuff like that..but the waiting list is 9-15 years!
worse comes to worse, i will juggle some bills, its only 450, thank god! our insurance is dragging its feet big time on doing anything it seems!
Click to expand...

Does your insurance realize the stroller is needed to keep Frankie from getting hurt?? That is insane a 9-15 years waiting list , I agree insurance do drag their feet about anything. What do people do meanwhile if they need a W/C to get around ? My daughter's dad needed a W/C after he had freak accident, his car when out of gear and rolled over him. He had to wait a long time to get a custom made W/C.
 
if he wasnt able to walk, it wouldnt be an issue, and i can totally understand. not even the neurologist knew what to think of the flinging himself backwards thing, he got to see him in action. he actually headbutted his therapist with the back of his head doing that the other day..i about died! but he seriously doesnt even seem to feel the pain, except when he does it really hard.
 
frankiesmom said:
if he wasnt able to walk, it wouldnt be an issue, and i can totally understand. not even the neurologist knew what to think of the flinging himself backwards thing, he got to see him in action. he actually headbutted his therapist with the back of his head doing that the other day..i about died! but he seriously doesnt even seem to feel the pain, except when he does it really hard.
Click to expand...

I hope you'll get all the help you need for Frankie so he will be able to reach his full potential. I know my sister when through a lot getting the help her daughter needed when they found out she had aspergers . The doctors said she would never mount to be anything! And my niece graduated a high honor
student from college! What do doctors know!!
 
Back
Top