Re: MR label

[Guest guest]

Subject: School wants to change her label to MR---2nd grade--HELP need

advice

Just had to respond. I have been very interested in IQ testing and the MR

label. One member in this group wrote that all persons with DS are MR, and

that actually is not the case. Some persons with DS are actually testing in

the low average to average range. Additionally, most IQ tests are not

normed on persons with DS and may not be appropriate. Even kids who are

doing great may not show their true ability on these standardized tests.

There are other ways to assess children, and it is your right to say no to

IQ testing. It is also your right to say no to a label that tends to be

discriminating in so many different ways.

I do know of someone whose daughter is 16. She has not been labeled MR

although she does have mental retardation. The mother chose not to allow

her to be labeled as such because she could not see how such a label would

benefit her IEP. Instead, she has been diagnosed with specific issues re:

speech delays, fine and gross motor delays, visual tracking deficits (which

effect her reading), and so forth. With these more specific disnoses, goals

are more specific in addressing her needs.

Finally, I believe that she is taking alternate tests. I'm not sure how,

but apparently is is possible. Hope this helps.

PS: Don't forget that with the raised expectations for persons with DS, we

are hearing of more and more of them attending college, both 2 and 4 year.

Are they MR? I doubt it! There are multiple intelligences, not just those

measured by and IQ test.

Thanks, Paige mom to Ben w/DS

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[Guest guest]

Subject: School wants to change her label to MR---2nd grade--HELP need

advice

Just had to respond. I have been very interested in IQ testing and the MR

label. One member in this group wrote that all persons with DS are MR, and

that actually is not the case. Some persons with DS are actually testing in

the low average to average range. Additionally, most IQ tests are not

normed on persons with DS and may not be appropriate. Even kids who are

doing great may not show their true ability on these standardized tests.

There are other ways to assess children, and it is your right to say no to

IQ testing. It is also your right to say no to a label that tends to be

discriminating in so many different ways.

I do know of someone whose daughter is 16. She has not been labeled MR

although she does have mental retardation. The mother chose not to allow

her to be labeled as such because she could not see how such a label would

benefit her IEP. Instead, she has been diagnosed with specific issues re:

speech delays, fine and gross motor delays, visual tracking deficits (which

effect her reading), and so forth. With these more specific disnoses, goals

are more specific in addressing her needs.

Finally, I believe that she is taking alternate tests. I'm not sure how,

but apparently is is possible. Hope this helps.

PS: Don't forget that with the raised expectations for persons with DS, we

are hearing of more and more of them attending college, both 2 and 4 year.

Are they MR? I doubt it! There are multiple intelligences, not just those

measured by and IQ test.

Thanks, Paige mom to Ben w/DS

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[Guest guest]

In a message dated 4/19/2005 9:52:47 AM Eastern Daylight Time,

KathyEverett@... writes:

I use to cry at the thought of those 2 simple words until I learned to accept

that they mean slow growing and that developmentally, she definitely is slow

growing.

-- IMHO What makes the MR are label so diifcult is the negative connotation

society has given it. " Retard " is still a common playground insult - and I hear

it in adults too. In fact I've had heated arguments with adults who should no

beeter but insist it's OK to refer to someone or something as " retarded " when

making a put down.

You're right - at face value " retarded " means only " slower " as in " slower to

learn and develop " . However, the general public still believes " retarded "

means " incapable of learning " ... in fact so do a lot of teachers who should also

know better!

- Becky

[Guest guest]

In a message dated 4/19/2005 9:52:47 AM Eastern Daylight Time,

KathyEverett@... writes:

I use to cry at the thought of those 2 simple words until I learned to accept

that they mean slow growing and that developmentally, she definitely is slow

growing.

-- IMHO What makes the MR are label so diifcult is the negative connotation

society has given it. " Retard " is still a common playground insult - and I hear

it in adults too. In fact I've had heated arguments with adults who should no

beeter but insist it's OK to refer to someone or something as " retarded " when

making a put down.

You're right - at face value " retarded " means only " slower " as in " slower to

learn and develop " . However, the general public still believes " retarded "

means " incapable of learning " ... in fact so do a lot of teachers who should also

know better!

- Becky

[Guest guest]

In a message dated 4/20/2005 8:22:04 AM Eastern Daylight Time,

jbocci55@... writes:

Maybe the young man with DS that Cheryl mentioned was never labeled MR

No, he was labeled MR, very early on in school. He was placed in self

contained classes and mom had to struggle to get him out. School officials had

more or less stated he wouldn't be able to do all that much and when she took

him

out of self contained he just blossomed. One thing you may not have taken

into account is he is a very competitive young man and he was very motivated to

do well. He wanted to get a standard diploma, his parents never pushed for

that as much as he did. He works very hard for his academic achievements, he

serves on a local board for adults who are institutionalized, he has attended

leadership conferences in DC (without parents)

What I don't understand is why it would be hard to believe that we have young

adults at high ends of the scale as well as at the opposite end?

Cheryl in VA

[Guest guest]

In a message dated 4/20/2005 8:22:04 AM Eastern Daylight Time,

jbocci55@... writes:

Maybe the young man with DS that Cheryl mentioned was never labeled MR

No, he was labeled MR, very early on in school. He was placed in self

contained classes and mom had to struggle to get him out. School officials had

more or less stated he wouldn't be able to do all that much and when she took

him

out of self contained he just blossomed. One thing you may not have taken

into account is he is a very competitive young man and he was very motivated to

do well. He wanted to get a standard diploma, his parents never pushed for

that as much as he did. He works very hard for his academic achievements, he

serves on a local board for adults who are institutionalized, he has attended

leadership conferences in DC (without parents)

What I don't understand is why it would be hard to believe that we have young

adults at high ends of the scale as well as at the opposite end?

Cheryl in VA

[Guest guest]

Cheryl, I know there are kids at the high end of the spectrum, but my

understanding of an MR label was that a child with this label more than likely

had a low IQ. I just recently graduated from college myself and I know how

difficult it was for me and I do not have an MR label, as far as I know : )

When you said he attended college without support in the classroom or

adaptations to tests other than extended time, perhaps, I found it hard to

believe. Sorry, but I do. I'm thrilled for this young man. I'm certainly not

accusing you of making it up. I am not one to set limitations on any

individuals, most importantly my own son. Why in the world would he have an MR

label if he has no limitations, obviously? That's the piece I'm missing.

jackie

-------------- Original message --------------

In a message dated 4/20/2005 8:22:04 AM Eastern Daylight Time,

jbocci55@... writes:

Maybe the young man with DS that Cheryl mentioned was never labeled MR

No, he was labeled MR, very early on in school. He was placed in self

contained classes and mom had to struggle to get him out. School officials had

more or less stated he wouldn't be able to do all that much and when she took

him out of self contained he just blossomed. One thing you may not have taken

into account is he is a very competitive young man and he was very motivated to

do well. He wanted to get a standard diploma, his parents never pushed for that

as much as he did. He works very hard for his academic achievements, he serves

on a local board for adults who are institutionalized, he has attended

leadership conferences in DC (without parents)

What I don't understand is why it would be hard to believe that we have young

adults at high ends of the scale as well as at the opposite end?

Cheryl in VA

[Guest guest]

Cheryl, I know there are kids at the high end of the spectrum, but my

understanding of an MR label was that a child with this label more than likely

had a low IQ. I just recently graduated from college myself and I know how

difficult it was for me and I do not have an MR label, as far as I know : )

When you said he attended college without support in the classroom or

adaptations to tests other than extended time, perhaps, I found it hard to

believe. Sorry, but I do. I'm thrilled for this young man. I'm certainly not

accusing you of making it up. I am not one to set limitations on any

individuals, most importantly my own son. Why in the world would he have an MR

label if he has no limitations, obviously? That's the piece I'm missing.

jackie

-------------- Original message --------------

In a message dated 4/20/2005 8:22:04 AM Eastern Daylight Time,

jbocci55@... writes:

Maybe the young man with DS that Cheryl mentioned was never labeled MR

No, he was labeled MR, very early on in school. He was placed in self

contained classes and mom had to struggle to get him out. School officials had

more or less stated he wouldn't be able to do all that much and when she took

him out of self contained he just blossomed. One thing you may not have taken

into account is he is a very competitive young man and he was very motivated to

do well. He wanted to get a standard diploma, his parents never pushed for that

as much as he did. He works very hard for his academic achievements, he serves

on a local board for adults who are institutionalized, he has attended

leadership conferences in DC (without parents)

What I don't understand is why it would be hard to believe that we have young

adults at high ends of the scale as well as at the opposite end?

Cheryl in VA

[Guest guest]

You know, Jackie, we may never know. I don't understand it either. However, I

have seen kids with MR do GREAT things, even academically, in areas of interest

and when they are highly motivated to learn. .

This last piece is what is missing form my daughter. She is not highly

motivated. There are no consequences that encourage her to change. It is a

struggle. She is a great kid as are all of our kids.

In grade school and HS you have to take all subjects. Maybe this young man is

taking only the subjects that are of interest, math & computer, and not

everything else. Also, we do not know what kind of load he is taking. We all

assume that he is taking a full 12 to 18 hour load. It doesn't matter. He is

doing well. He is an inspiration. Maybe my child will get there, maybe not.

Maybe she will be a great artist or just a mediocre one. There are all kinds of

maybes. Don't get discouraged (very hard not to). Keep encouraging your child

to do what they can do.

Thank you Cheryl for sharing about the great things a person can do even though

no one can explain it.

(mom to Bridget 12)

Re: MR label

Cheryl, I know there are kids at the high end of the spectrum, but my

understanding of an MR label was that a child with this label more than likely

had a low IQ. I just recently graduated from college myself and I know how

difficult it was for me and I do not have an MR label, as far as I know : )

When you said he attended college without support in the classroom or

adaptations to tests other than extended time, perhaps, I found it hard to

believe. Sorry, but I do. I'm thrilled for this young man. I'm certainly not

accusing you of making it up. I am not one to set limitations on any

individuals, most importantly my own son. Why in the world would he have an MR

label if he has no limitations, obviously? That's the piece I'm missing.

jackie

[Guest guest]

You know, Jackie, we may never know. I don't understand it either. However, I

have seen kids with MR do GREAT things, even academically, in areas of interest

and when they are highly motivated to learn. .

This last piece is what is missing form my daughter. She is not highly

motivated. There are no consequences that encourage her to change. It is a

struggle. She is a great kid as are all of our kids.

In grade school and HS you have to take all subjects. Maybe this young man is

taking only the subjects that are of interest, math & computer, and not

everything else. Also, we do not know what kind of load he is taking. We all

assume that he is taking a full 12 to 18 hour load. It doesn't matter. He is

doing well. He is an inspiration. Maybe my child will get there, maybe not.

Maybe she will be a great artist or just a mediocre one. There are all kinds of

maybes. Don't get discouraged (very hard not to). Keep encouraging your child

to do what they can do.

Thank you Cheryl for sharing about the great things a person can do even though

no one can explain it.

(mom to Bridget 12)

Re: MR label

Cheryl, I know there are kids at the high end of the spectrum, but my

understanding of an MR label was that a child with this label more than likely

had a low IQ. I just recently graduated from college myself and I know how

difficult it was for me and I do not have an MR label, as far as I know : )

When you said he attended college without support in the classroom or

adaptations to tests other than extended time, perhaps, I found it hard to

believe. Sorry, but I do. I'm thrilled for this young man. I'm certainly not

accusing you of making it up. I am not one to set limitations on any

individuals, most importantly my own son. Why in the world would he have an MR

label if he has no limitations, obviously? That's the piece I'm missing.

jackie

[Guest guest]

In a message dated 4/20/2005 8:51:54 AM Eastern Daylight Time,

jbocci55@... writes:

Why in the world would he have an MR label if he has no limitations,

obviously?

Hey the label came from the school system. Maybe they were wrong. My

daughter has an MR label according to testing but she always functions way

higher

than the psych info says she can ... and no one can explain it. On some of the

sub tests she scores in normal ranges and some of them she doesn't. She is the

opposite of someone with an LD label. It floored the educational staff and the

pysch staff and they can explain how she does it. I don't know what else to

say. People say these young adults that achieve don't exist or they are

mosiac. I give the list an example of a local boy that is doing well and it

appears that some are quite doubtful. So be it.

Barbara, I found the article but retrieving it is giving me a fit. I will

figure out how to do it, give me some time! ;-)

Cheryl in VA

[Guest guest]

In a message dated 4/20/2005 8:51:54 AM Eastern Daylight Time,

jbocci55@... writes:

Why in the world would he have an MR label if he has no limitations,

obviously?

Hey the label came from the school system. Maybe they were wrong. My

daughter has an MR label according to testing but she always functions way

higher

than the psych info says she can ... and no one can explain it. On some of the

sub tests she scores in normal ranges and some of them she doesn't. She is the

opposite of someone with an LD label. It floored the educational staff and the

pysch staff and they can explain how she does it. I don't know what else to

say. People say these young adults that achieve don't exist or they are

mosiac. I give the list an example of a local boy that is doing well and it

appears that some are quite doubtful. So be it.

Barbara, I found the article but retrieving it is giving me a fit. I will

figure out how to do it, give me some time! ;-)

Cheryl in VA

[Guest guest]

In a message dated 4/20/2005 9:20:17 AM Eastern Daylight Time,

mom2bridget@... writes:

Also, we do not know what kind of load he is taking. We all assume that he

is taking a full 12 to 18 hour load.

No, he is only going part time and taking a couple of classes at a time. I

am sorry if I didn't mention that. He is not a full time student going for a

degree. He is taking classes he is interested in.

Cheryl in VA

[Guest guest]

In a message dated 4/20/2005 9:20:17 AM Eastern Daylight Time,

mom2bridget@... writes:

Also, we do not know what kind of load he is taking. We all assume that he

is taking a full 12 to 18 hour load.

No, he is only going part time and taking a couple of classes at a time. I

am sorry if I didn't mention that. He is not a full time student going for a

degree. He is taking classes he is interested in.

Cheryl in VA

[Guest guest]

In a message dated 4/20/2005 6:34:14 PM Eastern Daylight Time,

cindysue@... writes:

but I

cringe when that is marked up to great parenting.

I never attributed the success of these kids to parenting skills. I am one

that has always preached our kids are differently affected by their own T21.

The involvement of the gene is different in each kid. I have been told by a

geneticist that they can look at 21 and tell what part of it is the marker for

heart conditions, what part is the marker for cognitive, etc., etc. They do

not know why some kids have the heart problems come up or are more affected in

the cognitive area. So when are kids are forming they do not know why some

have more involvement in different areas of chromosome 21.

Does anyone here get the newsletter from the mice research in CA? Their

latest bulletin is very interesting. Want me to post it?

Cheryl in VA

[Guest guest]

In a message dated 4/20/2005 6:34:14 PM Eastern Daylight Time,

cindysue@... writes:

but I

cringe when that is marked up to great parenting.

I never attributed the success of these kids to parenting skills. I am one

that has always preached our kids are differently affected by their own T21.

The involvement of the gene is different in each kid. I have been told by a

geneticist that they can look at 21 and tell what part of it is the marker for

heart conditions, what part is the marker for cognitive, etc., etc. They do

not know why some kids have the heart problems come up or are more affected in

the cognitive area. So when are kids are forming they do not know why some

have more involvement in different areas of chromosome 21.

Does anyone here get the newsletter from the mice research in CA? Their

latest bulletin is very interesting. Want me to post it?

Cheryl in VA

[Guest guest]

I give the list an example of a local boy that is doing well and it

> appears that some are quite doubtful. So be it.

I just think people are trying to figure out how someone with MR can

successfully complete college level courses without modifications. Cheryl -

I know there are some really successful people with DS. There is a man who

lives about an hour from here - he also drives, works (but I don't know

about college), etc. I have no idea if he was given the MR label. I know a

woman who has several DS features and many of the medical issues people with

DS have - she admits she was tested for DS with that being ruled out. I

wondered if that was via blood sample or skin test. She works, attended

post secondary school, is very involved in her community, etc. I'll never

know the answer and I'll probably never stop wondering. I also saw a

picture of a boy with 4% mosaicism - no physical features or mental

retardation - he only had a speech delay in his early childhood. His twin

brother has non-disjunction type DS.

I'm really happy for those individuals that are high achievers - but I

cringe when that is marked up to great parenting. I know I am preaching to

the choir - but that really hurts those of us who also do a great job but

our children's extra genetic material have affected them more.

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[Guest guest]

I give the list an example of a local boy that is doing well and it

> appears that some are quite doubtful. So be it.

I just think people are trying to figure out how someone with MR can

successfully complete college level courses without modifications. Cheryl -

I know there are some really successful people with DS. There is a man who

lives about an hour from here - he also drives, works (but I don't know

about college), etc. I have no idea if he was given the MR label. I know a

woman who has several DS features and many of the medical issues people with

DS have - she admits she was tested for DS with that being ruled out. I

wondered if that was via blood sample or skin test. She works, attended

post secondary school, is very involved in her community, etc. I'll never

know the answer and I'll probably never stop wondering. I also saw a

picture of a boy with 4% mosaicism - no physical features or mental

retardation - he only had a speech delay in his early childhood. His twin

brother has non-disjunction type DS.

I'm really happy for those individuals that are high achievers - but I

cringe when that is marked up to great parenting. I know I am preaching to

the choir - but that really hurts those of us who also do a great job but

our children's extra genetic material have affected them more.

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[Guest guest]

> cringe when that is marked up to great parenting.

> I never attributed the success of these kids to parenting skills.

lol..that is why I said I was preaching to the choir - I know you have a

wide exposure in the real world to individuals with DS.

Yes, please post it! I really miss the old days when medical abstracts and

such were posted on a regular basis.

> Does anyone here get the newsletter from the mice research in CA? Their

> latest bulletin is very interesting. Want me to post it?

> Cheryl in VA

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[Guest guest]

> cringe when that is marked up to great parenting.

> I never attributed the success of these kids to parenting skills.

lol..that is why I said I was preaching to the choir - I know you have a

wide exposure in the real world to individuals with DS.

Yes, please post it! I really miss the old days when medical abstracts and

such were posted on a regular basis.

> Does anyone here get the newsletter from the mice research in CA? Their

> latest bulletin is very interesting. Want me to post it?

> Cheryl in VA

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[Guest guest]

Cheryl .. there are very simple tests or evaluations that set the

qualification for classifying someone as having MR. If the young man is

as you describe him, he doesn't fit those qualifications at all. That's

OK. He has DS (trisomy-21 you say) but he wouldn't currently be

classified as MR. In California, where we just did an interview last

week, it is clear that DS is insufficient for you to get services, you

need to have a continuing condition that occurred before you were 18

that qualifies you as MR both before and afte age 18.

Special Olympics does NOT REQUIRE that the participants be classified

MR. LD .. or even having an IEP is enough. In SO, we saw many

participants who had no visible handicap, either intellectually or in

athletics. Since I never saw their qualification paperwork, I have to

assume that they were properly eligible.

It sounds like you have identified a very wonderful young man. He is

doing extremely well. I hope some academic will do a careful study to

understand what are the elements that have allowed this achievements and

help identify others with DS with the same potential.

Rick

[Guest guest]

Cheryl .. there are very simple tests or evaluations that set the

qualification for classifying someone as having MR. If the young man is

as you describe him, he doesn't fit those qualifications at all. That's

OK. He has DS (trisomy-21 you say) but he wouldn't currently be

classified as MR. In California, where we just did an interview last

week, it is clear that DS is insufficient for you to get services, you

need to have a continuing condition that occurred before you were 18

that qualifies you as MR both before and afte age 18.

Special Olympics does NOT REQUIRE that the participants be classified

MR. LD .. or even having an IEP is enough. In SO, we saw many

participants who had no visible handicap, either intellectually or in

athletics. Since I never saw their qualification paperwork, I have to

assume that they were properly eligible.

It sounds like you have identified a very wonderful young man. He is

doing extremely well. I hope some academic will do a careful study to

understand what are the elements that have allowed this achievements and

help identify others with DS with the same potential.

Rick

[Guest guest]

In a message dated 4/20/2005 10:02:02 PM Eastern Standard Time,

writes:

Why in the world would he have an MR label if he has no limitations,

obviously?

Hey the label came from the school system. Maybe they were wrong. My

daughter has an MR label according to testing but she always functions way

higher

I can't believe the amount of flap over Cheryl's post about a young man with

Ds who is doing well in one area.

I am the mother of a young lady who will be 18 in one week. Like many

other parents we did not want to place limitations on her and held out for

keeping her in as inclusive a setting as we possibly could.

Her capabilities and yes, her own limitations have ultimately taken all of us

in a different direction than we originally had hoped for. Do we love her

less?

Or do we resent other young people who are acheiving more? NO

Sheila has an incredible sense of humor and finds joy in a life that would

break many. But taking any kind of high school level academic courses, let

alone

college courses is just not realistic for her. This young man who is doing

well in computing and math courses--more power to him. And why are we

shaking our heads over an MR label?

Cheryl has shared something about one small aspect of his life--one where

he is doing well, but what about other subject areas, or relationships, or

any other aspects of his life. We might not be so quick to condemn the

use of an MR label if we knew everything about him. Besides what is a

label? Pretty meaningless in the general scheme of things. (IMHO)

Sheila has a friend at school who in some ways seems much " brighter " than

Sheila, but at the same time he clearly has some " mental retardation " . He

has a learners permit and talks about getting his drivers license, but...

....but it's not my place to share anything else about this young man.

Cheryl--thanks for sharing the story about this young man you know--he

sounds like a terrific person. I've loved hearing about your own daughter's

accomplishments as well. All of our children can benefit from positive

stories about young men and young women with Ds. Positive stories

do have the power to change attitudes and beliefs about our children.

nancy (mom of ; Sheila-DS, cardiac complications, ADHD, peripheral

blindness, deficiency in 6 clotting factors and low platelets, and

hypopituitarism; and Colleen)

[Guest guest]

In a message dated 4/20/2005 10:02:02 PM Eastern Standard Time,

writes:

Why in the world would he have an MR label if he has no limitations,

obviously?

Hey the label came from the school system. Maybe they were wrong. My

daughter has an MR label according to testing but she always functions way

higher

I can't believe the amount of flap over Cheryl's post about a young man with

Ds who is doing well in one area.

I am the mother of a young lady who will be 18 in one week. Like many

other parents we did not want to place limitations on her and held out for

keeping her in as inclusive a setting as we possibly could.

Her capabilities and yes, her own limitations have ultimately taken all of us

in a different direction than we originally had hoped for. Do we love her

less?

Or do we resent other young people who are acheiving more? NO

Sheila has an incredible sense of humor and finds joy in a life that would

break many. But taking any kind of high school level academic courses, let

alone

college courses is just not realistic for her. This young man who is doing

well in computing and math courses--more power to him. And why are we

shaking our heads over an MR label?

Cheryl has shared something about one small aspect of his life--one where

he is doing well, but what about other subject areas, or relationships, or

any other aspects of his life. We might not be so quick to condemn the

use of an MR label if we knew everything about him. Besides what is a

label? Pretty meaningless in the general scheme of things. (IMHO)

Sheila has a friend at school who in some ways seems much " brighter " than

Sheila, but at the same time he clearly has some " mental retardation " . He

has a learners permit and talks about getting his drivers license, but...

....but it's not my place to share anything else about this young man.

Cheryl--thanks for sharing the story about this young man you know--he

sounds like a terrific person. I've loved hearing about your own daughter's

accomplishments as well. All of our children can benefit from positive

stories about young men and young women with Ds. Positive stories

do have the power to change attitudes and beliefs about our children.

nancy (mom of ; Sheila-DS, cardiac complications, ADHD, peripheral

blindness, deficiency in 6 clotting factors and low platelets, and

hypopituitarism; and Colleen)

[Guest guest]

In a message dated 4/20/2005 10:02:02 PM Eastern Standard Time,

writes:

I'm sure there

is an ICD-10 code (for medical coding purposes) as well

There is an ICD-9 number for Down syndrome it is -- 758.0

There is a description that goes along with this number which includes a

number of physical attributes that might be seen and mental retardation

is included in this description.

It also lists " Effects/Prognosis " which I will quote:

" Multi-system disorder with varying degrees of severity. The I.Q. range is

reported to be between 25 and 50 with occasional individuals above 50.

Varying degrees of hearing loss and speech impairment are also

associated. Social performance is usually beyond expectations for

mental age. "

nancy (mom of , Sheila-DS and many other diagnoses; and Colleen)