update on frankie

Frankiesmom -- I just want to say that you are one of my heros. I really admire you.
 
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.
 
frankiesmom said:
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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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.
 
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.
 
frankiesmom said:
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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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......
 
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.
 
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.
 
frankiesmom said:
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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YAY!!!! And just as I thought....frankie seems to be not exactly mild (most of those kids can be served well with "just dhh" kids) but yet he's not severe/profound.
Have you seen a nereologist by any chance? I'm wondering...seriously wondering if he may have something undiscovered like siezures or something else, that when treated might be able to improve his development?
 
its on his medical report..moderate trainable mental retardation.. i mean, it really is what it is..but no, the MRI was normal. every single test has been fine. which makes it so frustrating that this could just be some random fluke. it wouldnt change anything, to know whats up but i would like to know, just the same.
 
I'm beginning to think you may never find the cause of his problems.

Anyway, I hope that the director with the kid like frank can give you tips on how to work with him. Do keep us updated.
 
frankiesmom said:
its on his medical report..moderate trainable mental retardation.. i mean, it really is what it is..but no, the MRI was normal. every single test has been fine. which makes it so frustrating that this could just be some random fluke. it wouldnt change anything, to know whats up but i would like to know, just the same.
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As for me, I was thinking that if there was a cause, there might be a treatment...that's all. But I do know that many disabilties don't have a known cause.
 
deafdyke said:
grey matter? OT but do you have anything else? Didn't you say you spoke late? You might have the same syndrome I do.
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yes, I started to talk when I was 6 and yeah that might be it

yep I had a missing grey matter and this year, I got mild scoliosis
 
hmmm..... do you have anything else? Seriously, you might have my syndrome....I have missing white matter too, and am HOH and almost all of us (except for me) don't speak until late.
 
deafdyke said:
hmmm..... do you have anything else? Seriously, you might have my syndrome....I have missing white matter too, and am HOH and almost all of us (except for me) don't speak until late.
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well I have a mysterious chest shield known as the lump right where the sternum is and I also have a cleft palate so both the lump and the cleft palate I have was inherited from my dad. I`m also myopic (fancy way of saying I am nearsighted! another thing, I have a low muscle tone on the upper trunk.
 
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Sarfarigirl2011 said:
well I have a mysterious chest shield known as the lump right where the sternum is and I also have a cleft palate so both the lump and the cleft palate I have was inherited from my dad. I`m also myopic (fancy way of saying I am nearsighted! another thing, I have a low muscle tone on the upper trunk.
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Have you ever had genetic testing done? Seriously, you might have my syndrome. I think off the top of my head if you have three or more weird things, you should be tested. I'm a bit more obviously affected then you (thick medicall file) but they're finding people with my syndrome with things like just severe speech delay or stuff like that....
 
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