any advice would be wonderful!

I have experienced much ignorance in general from people who seem to unable to look outside of themselves.

many people tend only want to see what they're comfortable with and understand....unfortunately, that's often very limited scope-
 
Like me.. I was Dxed with autism until I was 5 years old. 5 years of my life wasted.

I would take little Frankie to a specialist. :)
 
deafdyke said:
Frankiesmom, does he have scattered skills? Like he's not a severe or profound mentally handicapped kid right? Like is he strong in some areas, but weak in others? It's also possible that he may have underlying issues, that when they're resolved could improve his development.
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nope...its so damn strange..he cant eat solid food because he doesnt know how to chew..he cant play with toys in a purposeful way, like putting stuff in boxes, climbing on stuff, pretending stuff, or even pushing a baby doll stroller. he can pat at things and look at toys with lights..and thats about it. he cant feed himself because he cant get the spoon to his mouth, or even hold one..BUT he learned to walk and crawl right on schedule. it really makes no sense. he doesnt know how to imitate either..no waving, pointing, peekaboo, nothing. never have i seen a kid like this. the doctors all pretty much agree that the hearing loss is separate, and not the cause of his delays, which makes all of this suck that much worse. the early intervention lady has put off the goal of learning signs because he simply doesnt have the capacity right now. :(
 
Babyblue said:
Like me.. I was Dxed with autism until I was 5 years old. 5 years of my life wasted.

I would take little Frankie to a specialist. :)
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thats where we are going next week, luckily!
his mri was this morning..i dont know, none of it adds up to me..there HAS to be some reason he is like this, but finding it has proven harder than i thought.
the good news is that he is getting his hearing aids tomorrow, i believe..yay!!!!!
 
frankiesmom said:
thats where we are going next week, luckily!
his mri was this morning..i dont know, none of it adds up to me..there HAS to be some reason he is like this, but finding it has proven harder than i thought.
the good news is that he is getting his hearing aids tomorrow, i believe..yay!!!!!
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:) Yay for the hearing aids. He will not like them at first. Hearing all the new sounds that he is not used to. It will prove to be overstimulating at first.

I wish you the best on finding out. He is such a beautiful boy!
 
awesome and I know some troubleshooting tips if the problem with the aids are techinal related :D
 
thanks! i am pretty excited about it..i hope it helps him enjoy his life even a little more.
 
frankiesmom said:
nope...its so damn strange..he cant eat solid food because he doesnt know how to chew..he cant play with toys in a purposeful way, like putting stuff in boxes, climbing on stuff, pretending stuff, or even pushing a baby doll stroller. he can pat at things and look at toys with lights..and thats about it. he cant feed himself because he cant get the spoon to his mouth, or even hold one..BUT he learned to walk and crawl right on schedule. it really makes no sense. he doesnt know how to imitate either..no waving, pointing, peekaboo, nothing. never have i seen a kid like this. the doctors all pretty much agree that the hearing loss is separate, and not the cause of his delays, which makes all of this suck that much worse. the early intervention lady has put off the goal of learning signs because he simply doesnt have the capacity right now. :(
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Those really are a confusing cluster of symptoms.

If he is watching things with lights intently, then I would keep using the sign with him. He is probably taking in more receptively than the EI woman thinks he is.
 
frankiesmom said:
thats where we are going next week, luckily!
his mri was this morning..i dont know, none of it adds up to me..there HAS to be some reason he is like this, but finding it has proven harder than i thought.
the good news is that he is getting his hearing aids tomorrow, i believe..yay!!!!!
Click to expand...

That will certainly be an adventure. Don't be surprised or discouraged if he doesn't like them right at first. Some kids need to be eased into them because the sudden increase in stimulation is too overwhelming for them.
 
frankiesmom said:
nope...its so damn strange..he cant eat solid food because he doesnt know how to chew..he cant play with toys in a purposeful way, like putting stuff in boxes, climbing on stuff, pretending stuff, or even pushing a baby doll stroller. he can pat at things and look at toys with lights..and thats about it. he cant feed himself because he cant get the spoon to his mouth, or even hold one..BUT he learned to walk and crawl right on schedule. it really makes no sense. he doesnt know how to imitate either..no waving, pointing, peekaboo, nothing. never have i seen a kid like this. the doctors all pretty much agree that the hearing loss is separate, and not the cause of his delays, which makes all of this suck that much worse. the early intervention lady has put off the goal of learning signs because he simply doesnt have the capacity right now. :(
Click to expand...

As an educator, I strongly disagree with this.
 
Doctors always like consider hearing loss separate but I'm not convinced that hearing loss is it usually is a seperate issue. I have a genetic hearing loss disorder and doctors love to say that my symptoms are not connected. I suppose that I'm just a person with a cluster of unusual symptoms. lol I suspect that having no answer, this is just the best that the doctors can come up with. :P
 
believe it or not, i agree with the doctor on this one..he looks at lights, but..i dont know, its really hard to describe..its kind of how someone might zone out while listening to someone on the phone ramble on and on? hes looking at it, but hes not really taking it in. we have been trying to teach him to wave byebye and point for months and he still just doesnt understand. the only thing he gets REALLY serious about is me holding him..he clings to me like a not so small spider monkey! :D
the whole thing is just baffling though.
 
Is his vision ok? I wonder if he literally sees the lights better than he sees gestures, for instance.
 
frankiesmom said:
believe it or not, i agree with the doctor on this one..he looks at lights, but..i dont know, its really hard to describe..its kind of how someone might zone out while listening to someone on the phone ramble on and on? hes looking at it, but hes not really taking it in. we have been trying to teach him to wave byebye and point for months and he still just doesnt understand. the only thing he gets REALLY serious about is me holding him..he clings to me like a not so small spider monkey! :D
the whole thing is just baffling though.
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I agree completely that it is baffling. But I would still be reluctant to say that he is not taking any of it in. It is really hard to determine what a child may be taking in from a peripheral perspective at the time. Much later, they will give a clue that they have perceived and processed some sort of stimuli that we never even knew they were paying attention to.
 
Sad to say, but reading a lot of this reminds me so much of what we were told about my daughter.

Basically we were told:
1. She's borderline autistic
2. She's blind
3. She's deaf
4. She's retarded
5. She will never walk
6. She will never tolerate solid food
7. She is unteachable
8. She should be institutionalized
9. She will never be able to care for herself.
10. She will forever hate you due to her speech & language delays.
She was listed with 32 different developmental disorders and disabilities when she was 2 and 3. She failed all vision tests up to the age of 5. She had hearing aids from ages 5-8 before we found they did not help. She did not talk with a 75% understand-ability until she was 10. She did not learn to read until 9 and then only with the help of closed captioning on her favorite videos or TV shows.

Well, as I mentioned before, She proved them all wrong. Yes, she has delays and she has learning disabilities, but more than anything, we focus on what she can do, not what she can't.

Now, I do realize there are a lot of children who have it a lot worse than she did and I am not discounting that. However, I totally feel the frankiesmom is doing a wonderful job and approaching this the right way.

I totally applaud all dedicated parents who work hard for their children and I really and totally applaud and high five those dedicated teachers who are able to help these children grow even if only a little bit. My daughter was in the public school system for a short time and she has a speech therapist, a school nurse and a few teachers who made her feel like she was worth something. She was cut down and demoralized completely by teachers, principals and therapists (occupational and and physical).
 
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