rebeccalj

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

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?

Deafness

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rebeccalj

Welcome to *our* world...and now Frankies.

frankiesmom

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!!)

Secretblend

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).

KristinaB

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.

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Taking life one day at a time.

frankiesmom

i still show him stuff, and he does seem interested. so its a good sign!

deafdyke

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.

frankiesmom

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?

Babyblue

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.

sallylou

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.

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deafdyke

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!

frankiesmom

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!

whatdidyousay!

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!

frankiesmom

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!

CSign

What does he need an adaptive stroller for?

frankiesmom

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!

CSign

Love the creativity

whatdidyousay!

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.

frankiesmom

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.

whatdidyousay!

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!!

CSign

I think the doctors know quite a bit... But at the same time I don't agree with doctors or people putting limits on what a child can or cannot accomplish. Provide them with the opportunity, and as with Whatdidyousay's niece, they will never cease to amaze you. Children are little sponges- even children with cognitive issues. They just need to see and experience it consistently, and things will start to set in. He can do it, he just needs the opportunity.

The children I've been surrounded by, (and some with more severe intellectual disabilities) have made some amazing progress. One child who is deaf and also HA's autism over time demonstrated his receptive understanding of signs, and directions. His expressive vocabulary has been improving each year. Another child who is deaf and also had Down syndrome has made great progress, especially in the last two years. She is telling stories, and recounting memories from the day through ASL.
I realize Frankie has some different things going on, but there is more to him than meets the eye. Don't let the doctors limit what he "can do."

frankiesmom

well, all of my kids underwent a really big learning stage as toddlers, and i think frankie will too. he IS learning, but its very slow. today for instance, he "waved" at me. he wasnt trying to wave or anything but he made his hand wave, if that makes sense. hes learning to do different things with his hands. i also hold him in my lap and we watch music videos on youtube and i clap his hands for him..he still cant clap BUT he will relax his hands so i can do it for him. so there are little things here and there that are good. i really like seeing him enjoy music though..i think that is helping him more than anything.
also, his occupational therapist tried to sell me this "therapeutic brush" for 5 bucks. i get the concept, and i already do it on my own, but the reason it was hilarious was because it was one of those cheap plastic things you get when you have a baby? except it had a fancy name, i cant remember it at the moment though.

CSign

They used that at my sons old school. It is really helpful for a lot of reasons, including promoting circulation and helping with sensory issues.

Sunshine

Have you try infant massage help muscle tone? You use long gentle strokes down extremities and back and stomach. Seems help.

frankiesmom

of course, and i already do that..but..it was the cheapy free plastic newborn baby hair brush that they give away at the hospital..and they wanted 5 bucks for it!
im noticing that if you slap the word therapy before any product, you can expect an automatic markup. i saw some "therapy blocks" which were your every day wooden blocks on sale for 100 bucks!

frankiesmom

frank loves massage..after his bath i get out his baby magic stuff and give him a good rubdown..he is such a cuddle bug anyways, he just loves it.

inmate23

from experience dont go special stroller(i still have nightmares about mine)

my dad up till i was 8ish used a really good canvas pack which he cut leg holes in and placed a firm cushion in the bottom

the backpack allowed to hunting,tramping and enjoy "normal for my family" actives

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Please remeber I have audio processing disorder

i use asl rochester method or pop or oral

frankiesmom

oh no..frank is 30 pounds now, and there is no way i could haul him around..im too fat and out of shape!

purplewowies

You could get in shape. There are people who carry their eleven year olds on their back and originally thought they were too out of shape to do it.

frankiesmom

oh i could...but i think even if i were, lugging around a heavy kid wouldnt work for me. even more so if he were 11