Re: yet another MR

February 27, 2008

Great story! Made me smile. Way to go Mom and phone-calling

afficionado! :-)

>

> Hi everyone.. This is very long winded, but try to read to the end

if

> you can. And I promise you, I havent made any of this up.

> I have been a member of this board for a long time, however I

havent

> been actively reading/posting due to my own plate being full, and

just

> not having the time. However due to recent events in my, and my

childs

> life I have been " thirsty for information " once again. Which has

> brought me right back here.

>

> Lucky for me, my area of need happens to be the " hot topic " the

last

> few days. The diagnoses and/or classification of MR(mentally

retarded).

>

> Someone (I think Carolyn, and please accept my appologies now if I

am

> wrong, or if I misquote) said that MR is no longer used, and that

> the " new " term is Developmentaly Disabled, or Cognitively

Disabled.

>

> In the last 2-3 months, my daughter was Re-evaluated by the Child

study

> team at her school. She WAS in a mainstream Transitional First

grade

> classroom. Her teacher had to modify an already modified

curriculum,

> and her Neuro-Developmental pediatrician felt that a re-eval was

> warrented. I agreed.

>

> The tests results came back- She scored a 78 IQ. And I quote the

> CST, " That number reflects a boarderline MR diagnoses. Although we

dont

> agree your daughter is mentally retarded, due to spikes in some of

the

> areas we tested her in, however, it is apprarent she has multiple

> disabilities and should be placed in the MD classroom. And

placement

> can be made in September "

>

> I quickly took these results and full reports to her neuro, and to

my

> surpise she agreed with the school. Maybe surprise isnt the right

word-

> a kalidiscope of emotions from fear, denial, anger, and even

> depression. We all worked so hard for so long, I wasn't ready to

accept

> that this could possibly be true. My daughter mentally retarded?

The

> same child who started pre-k at age 3 with 100 signs, stringing

them

> together into small sentences to communicate. The same child who

> actively competes in horse shows now, and placed 5th and 6th out

of 10+

> riders who are " neuro-typical " (Thats another story/post regards to

> hippotherapy/theraputic riding)My point is, I didnt, or couldnt

believe

> that the 78% was accurate, and the professionals were telling me

she

> is " boarderline MR "

>

> While I agree, that the MR label has such a negative stigma

attached to

> it, it is a term that people are familiar with. They know exactly

what

> it means in the sence of where an individual is in their ability

to

> take in information, process it, store it, and use it later on. It

also

> defines ones ability to function in the " real world "

>

> Lets take the term, Developmentally Delayed/Disabled. For me,

> personally, that is so broad. Additionally, if your child was

elligible

> for Early Intervention, they were then classified on paper as

> Developmentally Delayed, which in turn, to someone who is knew and

not

> knowing the lingo would then think that means their child is MR.

Or

> someone who received an MR label would or could possibly think,

their

> child is worse off then the DD label..

>

> The ARC website uses both terms of " Intellectually and

Developmentally

> Disabled " and mentally retarded.

> http://www.thearc.org/NetCommunity/Page.aspx? & pid=405 & srcid=266

>

> In the history of the medical community there has been lots of

> terminology that has been changed on paper, but ordinary people,

and

> the professionals have not yet made the switch. For example,

diabetes.

> Juvinile diabetes is not used, (although the foundation is still

> there,) the term is now type 1. I think I heard somewhere that

Type 1

> and Type 2 terms are fading out, its now " insulin dependant, or

non

> insulin dependant " . There are tons of examples, manic-depression,

now

> bi-polar, add-adhd, now just ADHD with a litany of subtypes,

> Here is my favorite. APRAXIA. There are various ways to title it.

But

> probably the most offensive (in my opinion) is Childhood Apraxia

of

> Speech. Tell that to a pre-teen, or teanager he has a childhood

> disorder. I understand, that is the age when the apraxic child is

> diagnosed, but it does't go away when the child is no longer a

child in

> chronological years. So for God sake lets just stick with one

neutral

> AND simple term.

>

> I really wish an organization would develop that is sole purpose

was to

> send out memo's of the lastest terms in the medical community.

>

> Ohh, here are a few examples of how our NCLB act has recently

confused

> teachers, and professionals. What was once, SLD placements,

(specific

> learning disabled) is now LLD (language learning disabled), MH

> (multiple handicapped, is now MD, (multiple Disabiled).

Emotionally

> Disabled i think nk is now Behaviorally Disabled. I may have a few

of

> these crossed, but the point is, things are always changing,

morphing,

> and sometimes, and people can never agree on one term.

>

> ####Getting Back to my daugher#######

>

> I ultimately decided to do 2 things. One, place her in the MD

class to

> give her " something " rather than basically nothing academically.

And to

> hire an independant evaluator. SURPISE! My daughter scored in the

94%

> on the CTONI- (the Cognitive Test of Nonverbal Intelligence)

> What does that mean for me and her. As said by the professionals..

she

> is not mentally retarded.

>

> Ohh, and she hid in her room with the cordless extension phone

making

> phone calls without my knowledge yesterday- she called her daddy.

I

> found out, because he called me to let me know it was " cute " how i

let

> her call him. I said to her, show me how you did it. She scrolled

> through the called ID, read is name then hit the talk button which

> automatically dials the number on the caller id screen on the

phone

> handset. You may ask, " who else did she call? " Her aunt, her

brother,

> and last but not least, her school. She called them to let me know

she

> was sick, had an ear infection and wasn't coming into school. And

you

> may now ask, " who did she speak with? " Her case mgr from the CST.

Ya

> know.. the one who said she was boarderline MR.

>

> Dawn in NJ

>

February 27, 2008

Dear Dawn,

I am so proud of your little one. May God Bless her! It's a shame that the

system sometimes makes life so miserable for us. The sad thing is it's our

kids, our treasure, our future, and not just one file in the school system.

We all have had our share of struggles, but one day I am very hopeful our

kids will appreciate all the effort that their parents had to put in. So go

girl!!!!!!

Regards,

Ambika

_____

From:

[mailto: ] On Behalf Of jerzmomof4

Sent: Wednesday, February 27, 2008 11:20 AM

Subject: [ ] yet another MR

Hi everyone.. This is very long winded, but try to read to the end if

you can. And I promise you, I havent made any of this up.

I have been a member of this board for a long time, however I havent

been actively reading/posting due to my own plate being full, and just

not having the time. However due to recent events in my, and my childs

life I have been " thirsty for information " once again. Which has

brought me right back here.

Lucky for me, my area of need happens to be the " hot topic " the last

few days. The diagnoses and/or classification of MR(mentally retarded).

Someone (I think Carolyn, and please accept my appologies now if I am

wrong, or if I misquote) said that MR is no longer used, and that

the " new " term is Developmentaly Disabled, or Cognitively Disabled.

In the last 2-3 months, my daughter was Re-evaluated by the Child study

team at her school. She WAS in a mainstream Transitional First grade

classroom. Her teacher had to modify an already modified curriculum,

and her Neuro-Developmental pediatrician felt that a re-eval was

warrented. I agreed.

The tests results came back- She scored a 78 IQ. And I quote the

CST, " That number reflects a boarderline MR diagnoses. Although we dont

agree your daughter is mentally retarded, due to spikes in some of the

areas we tested her in, however, it is apprarent she has multiple

disabilities and should be placed in the MD classroom. And placement

can be made in September "

I quickly took these results and full reports to her neuro, and to my

surpise she agreed with the school. Maybe surprise isnt the right word-

a kalidiscope of emotions from fear, denial, anger, and even

depression. We all worked so hard for so long, I wasn't ready to accept

that this could possibly be true. My daughter mentally retarded? The

same child who started pre-k at age 3 with 100 signs, stringing them

together into small sentences to communicate. The same child who

actively competes in horse shows now, and placed 5th and 6th out of 10+

riders who are " neuro-typical " (Thats another story/post regards to

hippotherapy/theraputic riding)My point is, I didnt, or couldnt believe

that the 78% was accurate, and the professionals were telling me she

is " boarderline MR "

While I agree, that the MR label has such a negative stigma attached to

it, it is a term that people are familiar with. They know exactly what

it means in the sence of where an individual is in their ability to

take in information, process it, store it, and use it later on. It also

defines ones ability to function in the " real world "

Lets take the term, Developmentally Delayed/Disabled. For me,

personally, that is so broad. Additionally, if your child was elligible

for Early Intervention, they were then classified on paper as

Developmentally Delayed, which in turn, to someone who is knew and not

knowing the lingo would then think that means their child is MR. Or

someone who received an MR label would or could possibly think, their

child is worse off then the DD label..

The ARC website uses both terms of " Intellectually and Developmentally

Disabled " and mentally retarded.

http://www.thearc.

<http://www.thearc.org/NetCommunity/Page.aspx? & pid=405 & srcid=266>

org/NetCommunity/Page.aspx? & pid=405 & srcid=266

In the history of the medical community there has been lots of

terminology that has been changed on paper, but ordinary people, and

the professionals have not yet made the switch. For example, diabetes.

Juvinile diabetes is not used, (although the foundation is still

there,) the term is now type 1. I think I heard somewhere that Type 1

and Type 2 terms are fading out, its now " insulin dependant, or non

insulin dependant " . There are tons of examples, manic-depression, now

bi-polar, add-adhd, now just ADHD with a litany of subtypes,

Here is my favorite. APRAXIA. There are various ways to title it. But

probably the most offensive (in my opinion) is Childhood Apraxia of

Speech. Tell that to a pre-teen, or teanager he has a childhood

disorder. I understand, that is the age when the apraxic child is

diagnosed, but it does't go away when the child is no longer a child in

chronological years. So for God sake lets just stick with one neutral

AND simple term.

I really wish an organization would develop that is sole purpose was to

send out memo's of the lastest terms in the medical community.

Ohh, here are a few examples of how our NCLB act has recently confused

teachers, and professionals. What was once, SLD placements, (specific

learning disabled) is now LLD (language learning disabled), MH

(multiple handicapped, is now MD, (multiple Disabiled). Emotionally

Disabled i think nk is now Behaviorally Disabled. I may have a few of

these crossed, but the point is, things are always changing, morphing,

and sometimes, and people can never agree on one term.

####Getting Back to my daugher#######

I ultimately decided to do 2 things. One, place her in the MD class to

give her " something " rather than basically nothing academically. And to

hire an independant evaluator. SURPISE! My daughter scored in the 94%

on the CTONI- (the Cognitive Test of Nonverbal Intelligence)

What does that mean for me and her. As said by the professionals.. she

is not mentally retarded.

Ohh, and she hid in her room with the cordless extension phone making

phone calls without my knowledge yesterday- she called her daddy. I

found out, because he called me to let me know it was " cute " how i let

her call him. I said to her, show me how you did it. She scrolled

through the called ID, read is name then hit the talk button which

automatically dials the number on the caller id screen on the phone

handset. You may ask, " who else did she call? " Her aunt, her brother,

and last but not least, her school. She called them to let me know she

was sick, had an ear infection and wasn't coming into school. And you

may now ask, " who did she speak with? " Her case mgr from the CST. Ya

know.. the one who said she was boarderline MR.

Dawn in NJ

February 27, 2008

Ambika,

Thanks for your kind words.

Dawn in NJ

>

> Dear Dawn,

>

> I am so proud of your little one. May God Bless her! It's a shame

that the

> system sometimes makes life so miserable for us. The sad thing is

it's our

> kids, our treasure, our future, and not just one file in the school

system.

> We all have had our share of struggles, but one day I am very

hopeful our

> kids will appreciate all the effort that their parents had to put

in. So go

> girl!!!!!!

>

> Regards,

>

> Ambika

>

> _____

>

> From:

> [mailto: ] On Behalf Of jerzmomof4

> Sent: Wednesday, February 27, 2008 11:20 AM

>

> Subject: [ ] yet another MR

>

> Hi everyone.. This is very long winded, but try to read to the end

if

> you can. And I promise you, I havent made any of this up.

> I have been a member of this board for a long time, however I

havent

> been actively reading/posting due to my own plate being full, and

just

> not having the time. However due to recent events in my, and my

childs

> life I have been " thirsty for information " once again. Which has

> brought me right back here.

>

> Lucky for me, my area of need happens to be the " hot topic " the

last

> few days. The diagnoses and/or classification of MR(mentally

retarded).

>

> Someone (I think Carolyn, and please accept my appologies now if I

am

> wrong, or if I misquote) said that MR is no longer used, and that

> the " new " term is Developmentaly Disabled, or Cognitively Disabled.

>

> In the last 2-3 months, my daughter was Re-evaluated by the Child

study

> team at her school. She WAS in a mainstream Transitional First

grade

> classroom. Her teacher had to modify an already modified

curriculum,

> and her Neuro-Developmental pediatrician felt that a re-eval was

> warrented. I agreed.

>

> The tests results came back- She scored a 78 IQ. And I quote the

> CST, " That number reflects a boarderline MR diagnoses. Although we

dont

> agree your daughter is mentally retarded, due to spikes in some of

the

> areas we tested her in, however, it is apprarent she has multiple

> disabilities and should be placed in the MD classroom. And

placement

> can be made in September "

>

> I quickly took these results and full reports to her neuro, and to

my

> surpise she agreed with the school. Maybe surprise isnt the right

word-

> a kalidiscope of emotions from fear, denial, anger, and even

> depression. We all worked so hard for so long, I wasn't ready to

accept

> that this could possibly be true. My daughter mentally retarded?

The

> same child who started pre-k at age 3 with 100 signs, stringing

them

> together into small sentences to communicate. The same child who

> actively competes in horse shows now, and placed 5th and 6th out of

10+

> riders who are " neuro-typical " (Thats another story/post regards to

> hippotherapy/theraputic riding)My point is, I didnt, or couldnt

believe

> that the 78% was accurate, and the professionals were telling me

she

> is " boarderline MR "

>

> While I agree, that the MR label has such a negative stigma

attached to

> it, it is a term that people are familiar with. They know exactly

what

> it means in the sence of where an individual is in their ability to

> take in information, process it, store it, and use it later on. It

also

> defines ones ability to function in the " real world "

>

> Lets take the term, Developmentally Delayed/Disabled. For me,

> personally, that is so broad. Additionally, if your child was

elligible

> for Early Intervention, they were then classified on paper as

> Developmentally Delayed, which in turn, to someone who is knew and

not

> knowing the lingo would then think that means their child is MR. Or

> someone who received an MR label would or could possibly think,

their

> child is worse off then the DD label..

>

> The ARC website uses both terms of " Intellectually and

Developmentally

> Disabled " and mentally retarded.

> http://www.thearc.

> <http://www.thearc.org/NetCommunity/Page.aspx? & pid=405 & srcid=266>

> org/NetCommunity/Page.aspx? & pid=405 & srcid=266

>

> In the history of the medical community there has been lots of

> terminology that has been changed on paper, but ordinary people,

and

> the professionals have not yet made the switch. For example,

diabetes.

> Juvinile diabetes is not used, (although the foundation is still

> there,) the term is now type 1. I think I heard somewhere that Type

1

> and Type 2 terms are fading out, its now " insulin dependant, or non

> insulin dependant " . There are tons of examples, manic-depression,

now

> bi-polar, add-adhd, now just ADHD with a litany of subtypes,

> Here is my favorite. APRAXIA. There are various ways to title it.

But

> probably the most offensive (in my opinion) is Childhood Apraxia of

> Speech. Tell that to a pre-teen, or teanager he has a childhood

> disorder. I understand, that is the age when the apraxic child is

> diagnosed, but it does't go away when the child is no longer a

child in

> chronological years. So for God sake lets just stick with one

neutral

> AND simple term.

>

> I really wish an organization would develop that is sole purpose

was to

> send out memo's of the lastest terms in the medical community.

>

> Ohh, here are a few examples of how our NCLB act has recently

confused

> teachers, and professionals. What was once, SLD placements,

(specific

> learning disabled) is now LLD (language learning disabled), MH

> (multiple handicapped, is now MD, (multiple Disabiled). Emotionally

> Disabled i think nk is now Behaviorally Disabled. I may have a few

of

> these crossed, but the point is, things are always changing,

morphing,

> and sometimes, and people can never agree on one term.

>

> ####Getting Back to my daugher#######

>

> I ultimately decided to do 2 things. One, place her in the MD class

to

> give her " something " rather than basically nothing academically.

And to

> hire an independant evaluator. SURPISE! My daughter scored in the

94%

> on the CTONI- (the Cognitive Test of Nonverbal Intelligence)

> What does that mean for me and her. As said by the professionals..

she

> is not mentally retarded.

>

> Ohh, and she hid in her room with the cordless extension phone

making

> phone calls without my knowledge yesterday- she called her daddy. I

> found out, because he called me to let me know it was " cute " how i

let

> her call him. I said to her, show me how you did it. She scrolled

> through the called ID, read is name then hit the talk button which

> automatically dials the number on the caller id screen on the phone

> handset. You may ask, " who else did she call? " Her aunt, her

brother,

> and last but not least, her school. She called them to let me know

she

> was sick, had an ear infection and wasn't coming into school. And

you

> may now ask, " who did she speak with? " Her case mgr from the CST.

Ya

> know.. the one who said she was boarderline MR.

>

> Dawn in NJ

>

February 27, 2008

Dawn,

You have a very bright and wonderful child. I wish you great success in

finding whatever she needs to help the world see the smart and ingenius

little girl you have always known her to be.

For what it is worth, a lot of my reading seems to point to metabolic

and allergy as a factor in spotty and inconsistent performance. If you

need help looking or the list of docs I am considering talking to in

this area to rule things in or out for my guy please feel free to email

me on or offlist.

Best Wishes!

Liz

February 27, 2008

Liz,

I am very interested in what the docs have to say about the

relationship between allergies and academic performance. Where did

you find this info, a particular website(s) or on this board.

I find this very intriguing. Please share anything/everything you may

have. Geeez can you hear the desperation in my voice to help my child.

LOL.

Also, I assume you are in NJ too?

>

> Dawn,

>

> You have a very bright and wonderful child. I wish you great

success in

> finding whatever she needs to help the world see the smart and

ingenius

> little girl you have always known her to be.

>

> For what it is worth, a lot of my reading seems to point to

metabolic

> and allergy as a factor in spotty and inconsistent performance. If

you

> need help looking or the list of docs I am considering talking to

in

> this area to rule things in or out for my guy please feel free to

email

> me on or offlist.

>

> Best Wishes!

> Liz

>

February 27, 2008

Hi Dawn!

Just wanted to jump in to let everyone know that this is a perfect

example of inappropriate testing used by her town's school which

violates the rights of our verbal disabled children. As many of you

know Abby tested in the normal IQ range with private testing using

the Leiter R nonverbal test:

The Leiter-R is completely nonverbal and uninfluenced by educational,

social, and family experience.

http://portal.wpspublish.com/portal/page?_pageid=53,114601 & _dad=portal & _schema=P\

ORTAL

When Dawn asked her daughter's school to use appropriate nonverbal IQ

tests like the one above or the many listed in the archive below- her

school's response was " we don't have them " If Abby was deaf or blind

they would never get away with that response as it would not be

acceptable in the court of law! If they didn't have the ability to

do appropriate testing they would either have to purchase appropriate

tests - or send the student for appropriate testing to be done out of

district. A student's abilities are not to be tested on their

disabilities or it's a violation of their civil rights. It's clear

that unlike the hearing and visual disabled there is no government

advocacy for the verbal disabled.

It's easy for professionals to state that the school testing being

done for students like Abby 'is' appropriate -but I wonder if these

same individuals would say this if it was their child or grandchild.

The fact that Abby scored so inconsistent makes it difficult for them

to say mentally retarded, yet instead of them paying to have a second

opinion of appropriate testing -they recommend the MD placement.

And what if the parents didn't have the monies for a second opinion?

Where would children like Abby be classified and placed in that

situation? We all know the sad answer -and this huge group of

children is our future. Most can be mainstreamed if given the

chance. But I guess was annoys me most is the neurologist as 'he' is

paid private...and 'he' should know better! The fact that the

neurologist just auto agreed with the borderline MR classification

without any other testing recommended is just wrong! I know up till

now there was no reason for Dawn and her husband to have to look

outside of their town local neuroMD ..or even to have to advocate -

because their daughter has been doing so well and her school system

had been so generous and nice in services it offered. (ahhh- remember

my words -don't use the word " trust " )

I've been telling Dawn for awhile to take Abby to see Dr. Agin just

to make sure and I'm saddened it's due to this situation -but

thrilled that Abby finally will have an evaluation by a neuroMD that

knows what she is doing -and cares.

So let's recap:

When tested the first time by her school using inappropriate testing

Abby scored borderline mentally retarded. When tested the second

time with out of district private testing done by a school

psychologist from another district who used the Leiter R nonverbal

test Abby scored in the normal IQ range. Is it just me -or does that

make anyone else angry?! Perhaps it's because some viewed Tanner

this way when he was younger and fortunately we were able to give him

the chance to prove them wrong I get so passionate. I know that by

the grace of God there go I when I read posts like this.

Also...I've had the wonderful opportunity to meet Dawn and her entire

family including her daughter and can assure you that if you met them

there is no way Abby would stand out as any different or that you

would ever view Abby as mentally retarded -or borderline MR. Thank

goodness for out of district placement as that is always an option

when faced with a " nice " school that is clueless...let's hope they

are clueless because the other reason in my eyes would be criminal.

And just a side note -when schools and clinitions change the names

used from mental retardation to one of the many others suggested I

would of course use that instead as why would I or anyone else today

say childhood schizophrenia instead of autism. I again am not using

the name to insult -but to help parents here advocate when their

child is misdiagnosed as they still are as mentally retarded -and in

most cases that is what it is -a misdiagnosis.

Below is again an archive on appropriate testing:

Re: Fwd: VERBAL DISABLED IQ TEST

Hi Darlene!

Hope this answer is just as timely!

Quote from The Late Talker book in short -it's in archive below as

well.

" Formal cognitive testing is typically performed by a licensed

psychologist or neuropsychologist. Make sure that you are referred to

one who is familiar with testing nonverbal or unintelligible children

and that she uses age-appropriate nonverbal intelligence tests such

as the Leiter-R for children two years old and up, the Kaufman

Assessment Battery for Children (KABC) for children four years old

and older, the Universal Nonverbal Intelligence Test (UNIT) for

children five years old and above or the Comprehensive Test of

Nonverbal Intelligence (CTONI) or TONI-3 for those six and above. "

There's more from The Late Talker as well as awesome info from " Dr.

Bob " below. I'd also check out the bottom of Tanner's page to read

about when I walked in to a school verbal IQ " testing " nightmare!

http://www.cherab.org/information/familiesrelate/letter.html

What if I just listened to that school and didn't advocate tooth and

nail? No doubt Tanner would be right where they wanted to put him

since they didn't think Tanner would " make it " in a mainstream

kindergarten class!! For all of you that listen to Tanner and tell

me -he's different -no he's not -he's just been given a chance to

prove everyone that didn't believe in him wrong. Please give your

verbal disabled child that chance. Worst that can happen is

that 'you' are wrong. At least you know in your heart that you gave

your child that chance to fall. You can't go back to kindergarten or

first grade and start over. In speaking with one parent of a special

ed child in 6th grade now who loves to read I asked the mom -why

don't you see if he can get mainstreamed now? She said " He'd never

be able to because the classes he is in are not academic and he's

only working on a 3rd grade level " Please don't let that happen to

your baby!!

In a nutshell ask -is this appropriate for a deaf child and follow

that. While in our world it's assumed (wrongly) that a verbal

disabled child is learning disabled (see Dr. Rosenthal link below

to see how that's really bad!) -it's not assumed that a deaf

child is learning disabled. As I once said -if Tanner still had an

issue when he got older I'd get him a pair of hearing aids to wear

and to pretend he was deaf. Those without hearing impairments with

even minor speech impairments are assumed to be cognitive impaired.

It's not like that for the deaf and hard of hearing...anymore. As a

group we can continue to work to change this. Goodness knows that

something has to change for communication impaired as it's such a

huge and growing group. They are our future -and we have to help

them succeed.

~~~~~~~~~~~~~~~~~~~start of archive -hope this is the one you were

looking for!

Re: Non-Verbal Assessment Test

Hi Carol!

Glad you brought up Robin -she just updated the group, and sent the

following to me which I guess didn't go through. Robin's new email

is below and I'll try to find out from her a list a tests (couldn't

find that in the archives)

Please let us know what you think of the UNIT -Suzy loved it I recall.

First is a post from Robin -'s mom (with her contact info)

and then a recent post from me on tests:

kiddietalk@...

From: " Ketchem " <rcketchem@...>

Subject: Fwd: [ ] Re: Autism is a World ~ just

nominated for an -

Date: Wed, 26 Jan 2005 10:39:50 -0500

>

> Hi ,

>

> Well we finally made it to Georgia! We are now living in the

Buford

> area and so far we really like the area. We are very fortunate to

be

> able to have begin working with Zimet a wonderful

> speech therapist. Currently we are communicating by phone and e-

mail

> with regards to what type of program that needs

> to be developed for . will be meeting next

> month and reviewing the therapy program that has been

working

> very hard on. really is taking into consideration my

> thoughts and feelings and that really makes me feel apart of the

new

> team that we are developing.

>

> did have her day in court on August 10th for her federal

> lawsuit. She was very fortunate to have a wonderful federal judge

who

> really understood what life had been like for her with regards to

the

> school district and the IU. He scheduled a presettlement

conference

> and held the conference in his federal court for the day.

> We were asked to come to court that day with a cooperative spirit

to

> try and settle the case. We did just that and settled the case.

It

> took 8 hours in court but finally came to an agreement. We

actually

> let Mel tell us when she felt it was best. 's attorney

kept

> coming in with a different offer and the last offer he explained

it

to

> and looked right at him and said " ok " " done " . The

> attorney looked at us and we said we wanted to have

closure

so

> she could go on with her life and we respected Mel's decision.

Mel

> now has a nice trust fund that will help her with her new

program.

It

> was nice as when we went up to meet the judge he

> truly did not know which one was out of our three

daughters.

> That really made the judge think as well. When he read the

settlement

> agreement into record for everyone to hear Mel just sat there very

> calm and smiling. Mel knew it was over. The judge also made some

> closing remarks that were very powerful for

> Mel to hear. Those remarks he made that day sent a very powerful

> message to Mel and our family.

>

> has been apart of a team of doctors doing a study on PTSD

and

> the individual that has PTSD and the family that supports that

> individual. I was shocked to hear that is the only one

home

> at this time and recovering from her PTSD so nicely. The other

kids

> are either in group homes or are in residential

> school settings with really no hopes of returning home. Mel had a

> very very severe case of PTSD but with the love and support of her

> family you would never know today she even has it. Every time I

speak

> with this set of doctors, I am more determined to try and help

other

> families.

>

> is now recovering nicely from her past experiences and

> starting to move forward. has regained all of her motor

> planning tasks that she lost for so many years and she is saying

more

> and more words. 's old personality has once again emerged

and

> she is happy and enjoying life each day.

> is really enjoying living in Georgia away from the school

> district and the IU personnel. 's doctors believe that our

> moving will help one day communicate without support.

Mel's

> PTSD really took a large toll on Mel's motor planning and her

> communication. now lives without fear

> that one day someone from the school or IU is going to come and

get

> her like they told her so many times.

>

> One of the most exciting changes we have seen in is that

she

> now wants to join in for family game night. Our other two

daughters

> like to play dominoes. now has joined us in playing and

she

> plays without any support. She has watched us for several years

now

> playing but never really wanted to play.

> Mel had no trouble understanding the game right when she started

to

> play. This proved to us that is absorbing everything

thing

> around her but unable to express herself due to her global apraxia

but

> somehow she has the power to over come her apraxia and play

dominoes.

> This proved to our family

> that Mel has so much to offer and it is our job to help Mel

overcome

> her apraxia.

>

> We now feel is the time that Mel will really begin to move forward

> with her sever global apraxia. and will make a

great

> team and together one day will be able to share her story

with

> the world and help others. We truly believe the story needs to

come

> from so others can be helped.

> I think about all the kids that are in Mel's situation now and I

truly

> want help for all of them. and I will keep great notes

during

> 's therapy program so hopefully one day we can develop a

> program that can be used for older children and adults. There are

a

> handful of professionals that believe

> in our older children but not enough.

>

> I will keep you informed of Mel's progress. I truly hope one

day

> Mel will be communicating herself with you and you can ask Mel

> questions and Mel will be able to answer them herself. I believe

one

> day Mel will be at that point but she has a lot of hard work ahead

of

> her but she also has the determination that

> it will take work hard each and every day.

>

> does use facilitated communication and is using it once

again

> at home. wants to have support her thru

facilitated

> communication for the sole purpose of learning Mel's

movement

> when typing. Mel wants to develop a program that will

enable

> her to type without support due to

> Mel's negative experience with facilitated communication and the

> school district/IU personnel. I am also contacting families that

> have children who are using facilitated communication and trying

to

> get ideas for typing without support. Mel at one point was so

close

> to typing without support so we hope to get

> her back to that point once again.

>

> I also have a new e-mail address rcketchem@... since

the

> move. Please e-mail with any questions you may have.

>

> Take care,

>

> Robin

From: " kiddietalk " <kiddietalk@...>

Date: Fri Jan 28, 2005 8:50 pm

Subject: Re: & Tricia - Help with Assessment Tests

Theresa there really are no tests that will 100% be perfect to test

the receptive ability of a speech disabled child -at least one needs

to be developed (would be nice)

Also as we state in The Late Talker -tests used are important -but

the professional chosen to do the testing is at times just as

important.

The hardcover of The Late Talker had so much cut from it because the

publisher didn't want to overwhelm parents of two year old " late

talkers " I agree much of the stuff for older children who truly are

speech impaired is overwhelming for someone who may not even need

that information who has an undiagnosed two year old child with a

speech delay. We (the authors) pushed to add a bit more to the

paperback version of the book -so a bit more on testing in the PB.

I'll retype that part of the book from around page 44 (I

unfortunately have the book and drafts on another computer right

now, and type faster than it would take me to get to that one -so

may be typos in my retype)

" Usually the SLP uses a " standardized " speech -language test, one

with " norms " based on a large sample of typically developing

children. This allows the SLP to assess where your child stands

compared to other children of his age. Since young children are not

always cooperative in sitting through standardized tests, a more

informal evaluation through play may be done. You are then given an

estimate of your child's standing, based on the SLP's training,

knowledge, and experience -her " informed clinical opinion. "

Make sure the testing conditions work for your late talker.

children with speech and expressive language impairments obviously

score less well on a receptive test that requires verbal responses.

It is possible to do speech and language testing for receptive

ability even with children that are essentially nonverbal. In these

cases, the examiner can look at other forms of functional

communication, including the use of gestures, formal sign language,

pictures, and augmentative communication devices.

Here are the more popular language tests or scales that your SLP may

use:

Rossetti Infant Toddler Language Scale (birth to three years)

Preschool Language Scale -3 (PLS-3) (birth to six years)

Clinical Evaluation of Language Functions (CELF) -Preschool (three

through six year) and CELF 3 (six through twenty one)

Receptive One-Word Picture Vocabulary Test (ROWPVT) (two through

eighteen years)

Expressive One-Word Picture Vocabulary Test -Revised

(EOWPVT) (two through twelve years)

Test of Early Language Development-3 (TELD-3) (two through seven

years) "

And then

" Two tests designed more specifically to evaluate children with

motor planning disorders are the Kaufman Speech Praxis Test for

Children (KSPT) and the Verbal Motor Production Assessment for

Children (VMPAC) The KSPT is an assessment tool for kids age twenty-

four to seventy-one months. It measures the child's imitative

responses, identifying where the child breaks down in her ability to

speak, and ranges from simple sounds to polysyllabic words to

spontaneous connected speech. The VMPAC targets an older age group,

three to twelve year olds, measuring motor speech abilities by first

looking at basic processes, like breath support and muscle tone, and

then moving to complex sequencing of syllables. "

And from the " Visiting the Doctor " section of the chapter

" Formal cognitive testing is typically performed by a licensed

psychologist or neurophysiologist. Make sure that you are referred

to one who is familiar with testing nonverbal or unintelligible

children and that she uses age-appropriate 'nonverbal' intelligence

tests, such as the Leiter-R for children two years old and up, the

Kaufman Assessment Battery for Children (KABC) for children four

years old and older, the Universal Nonverbal Intelligence Test

(UNIT) for children five years old and above, or Comprehensive Test

of Nonverbal Intelligence (CTONI) for those six and above) "

And...Here is a great message on how to test children who are

globally apraxic from one of our member's (Sherry) child's doctor -

" Dr. Bob " You can use this in addition to what's in The Late Talker

to help advocate. (Hurray for " Dr. Bob " ! The type of

neuropsychologist we all would love to take our child to)

" Summary of assessment procedures

Children with significant language and motor skills delays

E. Friedle, Ph.D.

Clinical/Neuropsychologist

Formalized assessment of children with low incidence disablitities

does not

often provide accurate or practical information about their cognitive

functioning skills. Such assessmenet does provide evidence that

these

children often have not learned how to respond in direct one-to-one

reciprocal testing situations, or that they are unable to respond in

those

situations due to the nature of their disabilities. The lack of

response

should not be considered then, necessarily, as a global and fixed

delay in

cognitive/intellectual potential. Developmental theorists and

practitioners

have long known that cognitive growth is not only enhanced, but also

dependent upon opportunities to experience a wide variety of sensory

stimuli

in an interactive relationship. Problem solving skills, analytical

reasoning, and decision-making are all formalized, cognitively, when

integration of information is ongoing. Language and motor skill

limitations

often prevent the integration and experiences and thus certain

cognitive

growth waits until such experiences may be provided. Children may

have

learned to problem-solve and reason in ways that are not assessed by

formalized evaluations and are only recognizable when the child is

allowed

to experience sensory information in a manner most productive to

them. It

is often then necessary for the examiner to assess what

opportunities and

experiences the child may have had already, how an assessment may

prompt the

child to show what they can do with various stimuli and how problem

solving,

analytical, and decision making skills can be exhibited by a child

in a

non-formalized approach.

The purpose of an assessment request has to be relevant to the child

and to

their experiences, i.e. the child needs to see some purpose for

providing a

response. A very simple example of this premise is: asking them to

name an

object may result in no response, but asking them to get the object

may show

a knowledgeable response.

Children with language and motor deficits often play within the

restrictions

that their limitations have presented and this " changed " pattern of

play,

from what is seen with non-disabled children, can be a direct

reflection of

their ability to problem solve and reason in play. An example for

this may

be when a child finds that laying things down and flat makes it

easier to

manipulate, or that moving things closer or out of the way

facilitates motor

planning and play. Often the child may see no purpose to expand

experiences, or have not figured out independently how to change

their play

patterns.

Restrictions in movement or language limit the experiences a child

has had

with objects and stimuli. The need to practice simple movements, to

hear

the words that go along with those movements, and then to ask a

child to

duplicate the movements and/or the words can greatly facilitate

cognitive

growth. If a child can readily make such duplicated responses then

the

potential for cognitive growth at that point presents no

limitations. An

examiner can lead the play situation in these types of activities

and note

the ability of the child to engage in the " play " at a different

level. The

purpose is then presented clearly for the child, both for the

language and

for the movement, and thus becomes an active part of their

developmental

growth and understanding. Sometimes showing them or asking them to

change

their approach results in a larger perspective of possibilities in

play.

The examiner is an active participant in the assessment approach,

engaged

with the child in the semi-directed play type of assessment. The

examiner

notes closely when a child shows a lack of understanding of the

language

presented or an inability to make the movements requested. At all

times the

examiner is assessing how well the child appears to follow the

purpose of

the activity or the change in direction of an activity. "

And...Don't forget the proven " Rosenthal theory " I've written about!

http://www.pineforge.com/newman4study/resources/rosenthal1.htm

=====

February 27, 2008

WOW!!! what guts your daughter has. do ya think she got it from mom?!?!

chris

[childrensapraxiane t] yet another MR