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Unread 11-17-2011, 12:13 AM   #331 (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.
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?
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Unread 11-17-2011, 11:25 AM   #332 (permalink)
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yep, we saw a neurologist, had an mri done...all normal! so strange!!
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Unread 11-17-2011, 06:31 PM   #333 (permalink)
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yep, we saw a neurologist, had an mri done...all normal! so strange!!
same with me when I was little but I had a missing grey matter
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Unread 11-17-2011, 09:24 PM   #334 (permalink)
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same with me when I was little but I had a missing grey matter
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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Unread 11-17-2011, 09:49 PM   #335 (permalink)
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yep, we saw a neurologist, had an mri done...all normal! so strange!!
Confusing. So do this mean it genetic related? Would think MRI would show some kind of signs for, as you say, 'retardation.' <--- do not like that word
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Unread 11-18-2011, 04:18 PM   #336 (permalink)
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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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Unread 11-18-2011, 07:06 PM   #337 (permalink)
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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.
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Unread 11-18-2011, 08:04 PM   #338 (permalink)
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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.
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.
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Unread 11-18-2011, 08:36 PM   #339 (permalink)
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grey matter? OT but do you have anything else? Didn't you say you spoke late? You might have the same syndrome I do.
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
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Unread 11-18-2011, 08:52 PM   #340 (permalink)
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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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Unread 11-18-2011, 09:17 PM   #341 (permalink)
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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.
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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Unread 11-21-2011, 01:07 AM   #342 (permalink)
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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.
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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Unread 11-21-2011, 04:09 PM   #343 (permalink)
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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....
I did when I was little and everything was normal though but I did have a cute lil small head xD but the report did mentioned Prader Wills and Stickler's.
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Unread 11-21-2011, 04:14 PM   #344 (permalink)
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If I remember right, Einstine was a late bloomer too. And as someopne else said, you are my hero!
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Unread 11-21-2011, 04:18 PM   #345 (permalink)
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aw thankies! at least I have hearing aids that looks really neat!
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Unread 11-21-2011, 06:24 PM   #346 (permalink)
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I did when I was little and everything was normal though but I did have a cute lil small head xD but the report did mentioned Prader Wills and Stickler's.
How many years ago? There's more intense genetic testing available...like that can detect very tiny chromosome changes.
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Unread 11-21-2011, 07:09 PM   #347 (permalink)
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I knew a woman who was moderately trainable. She worked in a nursery. She got married in later life. It is possible to have a good life with that Dx.
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Unread 11-21-2011, 07:18 PM   #348 (permalink)
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I knew a woman who was moderately trainable. She worked in a nursery. She got married in later life. It is possible to have a good life with that Dx.
Wow....married?!?! That's neat.
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Unread 11-21-2011, 07:29 PM   #349 (permalink)
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I was really happy for her. There really is a lid for every pot. lol
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Unread 11-21-2011, 07:35 PM   #350 (permalink)
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^^^Haha, if you're lucky enough to be a pot!
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Unread 11-21-2011, 07:38 PM   #351 (permalink)
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^^^Haha, if you're lucky enough to be a pot!
And what's wrong with being a Lid???
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Unread 11-21-2011, 07:49 PM   #352 (permalink)
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^^^Not a thing! But maybe there are non pots/lids?
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Unread 11-21-2011, 08:17 PM   #353 (permalink)
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^^^Not a thing! But maybe there are non pots/lids?
You mean pots that live like a pan or lids that live like a cookie sheet?

Oh, no, I've totally forgotten what thread this is...

Edit: My apologies to Frankie's Mom!!! Sorry!
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Unread 11-21-2011, 10:55 PM   #354 (permalink)
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The good news about him being moderate is that he can be served somewhat easily at a deaf school. It's going to be hard to tell how affected he will be...like is he going to be mild/moderate vs. moderately severe. Only time will tell right? It's too bad that you aren't in MA. We have two mentally handicapped dhh schools. (Beverely School for the Deaf and the deaf-blind program at Perkins, which is open for dhh kids with significent developmental issues)
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Unread 11-22-2011, 04:24 PM   #355 (permalink)
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How many years ago? There's more intense genetic testing available...like that can detect very tiny chromosome changes.
idk but I know that I was just a little baby then
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Unread 11-22-2011, 06:51 PM   #356 (permalink)
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idk but I know that I was just a little baby then
If so you should get tested again. They're finding very mild chromosome changes.
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Unread 11-22-2011, 10:06 PM   #357 (permalink)
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I should! maybe when I`m out of school after I graduate
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