update on frankie - Page 12

deafdyke · 11-17-2011, 12:13 AM

Quote:

Originally Posted by frankiesmom

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?

frankiesmom · 11-17-2011, 11:25 AM

yep, we saw a neurologist, had an mri done...all normal! so strange!!

Sarfarigirl2011 · 11-17-2011, 06:31 PM

Quote:

Originally Posted by frankiesmom

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

deafdyke · 11-17-2011, 09:24 PM

Quote:

Originally Posted by Sarfarigirl2011

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.

rebeccalj · 11-17-2011, 09:49 PM

Quote:

Originally Posted by frankiesmom

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

frankiesmom · 11-18-2011, 04:18 PM

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.

**deafskeptic** · 11-18-2011, 07:06 PM

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.

deafdyke · 11-18-2011, 08:04 PM

Quote:

Originally Posted by frankiesmom

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.

Sarfarigirl2011 · 11-18-2011, 08:36 PM

Quote:

Originally Posted by deafdyke

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

deafdyke · 11-18-2011, 08:52 PM

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.

Sarfarigirl2011 · 11-18-2011, 09:17 PM

Quote:

Originally Posted by deafdyke

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.

deafdyke · 11-21-2011, 01:07 AM

Quote:

Originally Posted by Sarfarigirl2011

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....

Sarfarigirl2011 · 11-21-2011, 04:09 PM

Quote:

Originally Posted by deafdyke

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.

**Cheetah** · 11-21-2011, 04:14 PM

If I remember right, Einstine was a late bloomer too. And as someopne else said, you are my hero!

Sarfarigirl2011 · 11-21-2011, 04:18 PM

aw thankies!

at least I have hearing aids that looks really neat!

deafdyke · 11-21-2011, 06:24 PM

Quote:

Originally Posted by Sarfarigirl2011

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.

**sallylou** · 11-21-2011, 07:09 PM

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.

deafdyke · 11-21-2011, 07:18 PM

Quote:

Originally Posted by sallylou

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.

**sallylou** · 11-21-2011, 07:29 PM

I was really happy for her. There really is a lid for every pot. lol

**mbrek** · 11-21-2011, 07:35 PM

^^^Haha, if you're lucky enough to be a pot!

**Cheetah** · 11-21-2011, 07:38 PM

Quote:

Originally Posted by mbrek

^^^Haha, if you're lucky enough to be a pot!

And what's wrong with being a Lid???

**mbrek** · 11-21-2011, 07:49 PM

^^^Not a thing! But maybe there are non pots/lids?

**Cheetah** · 11-21-2011, 08:17 PM

Quote:

Originally Posted by mbrek

^^^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!

deafdyke · 11-21-2011, 10:55 PM

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)

Sarfarigirl2011 · 11-22-2011, 04:24 PM

Quote:

Originally Posted by deafdyke

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

deafdyke · 11-22-2011, 06:51 PM

Quote:

Originally Posted by Sarfarigirl2011

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.

Sarfarigirl2011 · 11-22-2011, 10:06 PM

I should! maybe when I`m out of school after I graduate

11-18-2011, 07:06 PM	#337 (permalink)
deafskeptic Premium Member Join Date: Sep 2006 Posts: 14,512	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 likes this. __________________ Left ear implanted with Med-El on April 24 2007. Activated on May 9th. Upgraded to Opus 2 9/10/2010 Think Pink. FREE JILLIO!

11-21-2011, 04:18 PM	#345 (permalink)
Sarfarigirl2011 Registered User Join Date: Jun 2010 Posts: 1,969	aw thankies! at least I have hearing aids that looks really neat! Cheetah likes this. __________________ 18 yr old girl with a moderate/severe in the right and severe on the left. currently wearing purple Oticon Safari P 600s

11-21-2011, 07:09 PM	#347 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	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. deafdyke and Bottesini like this. __________________

11-21-2011, 07:29 PM	#349 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	I was really happy for her. There really is a lid for every pot. lol Cheetah likes this. __________________

11-21-2011, 07:35 PM	#350 (permalink)
mbrek Premium Member Join Date: Aug 2011 Posts: 1,512 Blog Entries: 1	^^^Haha, if you're lucky enough to be a pot! __________________ Sarcasm - just another little service I offer.

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11-17-2011, 11:25 AM	#332 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	yep, we saw a neurologist, had an mri done...all normal! so strange!!

11-18-2011, 04:18 PM	#336 (permalink)
frankiesmom Registered User Join Date: Jun 2011 Posts: 515	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.

11-18-2011, 08:52 PM	#340 (permalink)
deafdyke Registered User Join Date: Mar 2003 Location: Trebekistan Posts: 13,078	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.

11-21-2011, 04:14 PM	#344 (permalink)
Cheetah Cheetah Consulting-Closed Join Date: Jul 2011 Posts: 2,694	If I remember right, Einstine was a late bloomer too. And as someopne else said, you are my hero!

11-21-2011, 07:49 PM	#352 (permalink)
mbrek Premium Member Join Date: Aug 2011 Posts: 1,512 Blog Entries: 1	^^^Not a thing! But maybe there are non pots/lids? __________________ Sarcasm - just another little service I offer.

11-21-2011, 10:55 PM	#354 (permalink)
deafdyke Registered User Join Date: Mar 2003 Location: Trebekistan Posts: 13,078	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)

11-22-2011, 10:06 PM	#357 (permalink)
Sarfarigirl2011 Registered User Join Date: Jun 2010 Posts: 1,969	I should! maybe when I`m out of school after I graduate __________________ 18 yr old girl with a moderate/severe in the right and severe on the left. currently wearing purple Oticon Safari P 600s

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