Re: Social/vocational/age issues

September 27, 2001

When was in infant stim, I asked about " reading readiness " and just

got a blank stare. So, I did it myself. When she was in first grade, her

teacher asked the school board for readers and was told she would never

teach her kids to read, so she photocopied readers, taught her students to

read, then the school board gave her some readers. Thank goodness, I

encountered fewer and fewer obstacles as time went by. Now, she is so high

functioning that no one ever tells me she can't do this or will never do

that. The only problem she seems to have are those who treat her like a pet.

granny

---

" The first casualty of war is truth. "

-- Rudyard Kipling

http://www.bspyle.com/granny.html

Re: Social/vocational/age issues

> In a message dated 9/26/01 3:55:26 PM Central Daylight Time,

> wildwards@... writes:

>

> > . I hope kids with DS continue to make progress and astound the

> > world, breaking the " stereotype " barrier until it no longer exists. And

I

> > hope parents continue to work towards these goals on behalf of their

> > children

> > with the hope that their future will be only better.

> > Cheryl in VA

> >

> > I hope so too. " blew the minds " of many educators, etc.

when

> > he learned to read and all the things kids with DS were not supposed to

do.

> > And that is over 30 years ago. He would not have had a chance to do

that

> > in public school. But they were not impressed enough to apply it to

other

> > children. It was many years before our kids were included in public

> > schools. And as you know, that is still a struggle. But I am so glad

that

> > now they are getting a chance.

>

> Jessie

>

September 27, 2001

Wonderful post Cheryl, I completely agree with you. I had an interesting

phone converstion this morning with a parent who has a daughter 48/ds. She

called because of an article in the AZ Republic today (another post on that

later). The conversation turned to education, when I said that was in

regular education classrooms the mom said, " well she can't read or write " . I

said, " yes, she reads and writes very well " . Mom said, " well, she can't be

down's then " .

In a message dated 9/26/01 1:54:48 PM, wildwards@... writes:

>,

>I understand what you were saying, as well as what Rick was saying. I really

>

>don't need an explanation. Our experience so far, for my daughter with

>DS,

>who is now 19, and for some of her friends with DS, has been quite different

>

>from what Rick or Granny have experienced for their children, according

>to

>the posts they make. Perhaps that is why my opinions often differ from

>

>theirs.

>

>My daughter doesn't seek out intellectual peers. She is comfortable with

>

>many types of people. She has friends of all ages, all colors, all IQs,

>and

>all genders. She goes to the mall with non DS friends, to football games,

>

>concerts and parties. She does the same with her DS friends. She is well

>

>loved in our community and respected by her school peers. She has champions

>

>when she needs them. I believe a big part of that is because segregation

>has

>never been part of her life. And as long as we are able, it won't be.

>This

>may change as she gets older and school is no longer the main focus of

>her

>life. That happens to many people. We will deal with that when it happens.

>

>Hopefully she will find new friends to replace the ones she loses.

>

>I work at a center for independent living. I see many adults with

>disabilities, not just those with DS. Their lives in segregated facilities,

>

>nursing homes and group homes are not what I want for my child. The

>limitations placed on their lives because of where they live is not what

>I

>want for my child. The quality of life there is not what I want for my

>

>child. I will continue to work towards something different and hope that

>we

>find the right fit for my child when she is ready to be on her own. You

>are

>right that it is unrealistic to expect our children to function independently

>

>or be accepted by everyone in society. The great thing is that they don't

>

>have to be! In our world today, more than ever before, we see people with

>

>disabilities of all types integrated into society instead of relegated

>to

>institutions as in the past.

>

>All parents adjust their expectations and dreams for their children. That

>is

>a natural process. I sincerely doubt if any parents of a baby with DS

>envision that child living a " normal " life or the options Rick mentioned

>in

>the beginning of his post. But I would also love to think that most of

>those

>parents with the babies want their child to have every opportunity available

>

>and not underestimate their child's abilities. I would never encourage

>a

>parent to lower their expectations based on what my child has experienced.

>I

>would rather encourage parents to have high expectations and work towards

>

>them than look back years later and wish they had done things differently.

>My

>daughter is still achieving remarkable goals (IMO) and I think this

>philosophy contributes to aid in her success.

>

>Education from 20 years ago is irrelevant to me, except in a historical

>

>context. It's what's happening now that counts and what the future brings.

>

>I sincerely hope the young children of today with DS have more and better

>

>educational opportunities than my child did. I hope that improvements

>

>continue and society continues to improve the way they view and treat people

>

>with DS. I hope kids with DS continue to make progress and astound the

>

>world, breaking the " stereotype " barrier until it no longer exists. And

>I

>hope parents continue to work towards these goals on behalf of their children

>

>with the hope that their future will be only better.

>Cheryl in VA

September 27, 2001

Wonderful post Cheryl, I completely agree with you. I had an interesting

phone converstion this morning with a parent who has a daughter 48/ds. She

called because of an article in the AZ Republic today (another post on that

later). The conversation turned to education, when I said that was in

regular education classrooms the mom said, " well she can't read or write " . I

said, " yes, she reads and writes very well " . Mom said, " well, she can't be

down's then " .

In a message dated 9/26/01 1:54:48 PM, wildwards@... writes:

>,

>I understand what you were saying, as well as what Rick was saying. I really

>

>don't need an explanation. Our experience so far, for my daughter with

>DS,

>who is now 19, and for some of her friends with DS, has been quite different

>

>from what Rick or Granny have experienced for their children, according

>to

>the posts they make. Perhaps that is why my opinions often differ from

>

>theirs.

>

>My daughter doesn't seek out intellectual peers. She is comfortable with

>

>many types of people. She has friends of all ages, all colors, all IQs,

>and

>all genders. She goes to the mall with non DS friends, to football games,

>

>concerts and parties. She does the same with her DS friends. She is well

>

>loved in our community and respected by her school peers. She has champions

>

>when she needs them. I believe a big part of that is because segregation

>has

>never been part of her life. And as long as we are able, it won't be.

>This

>may change as she gets older and school is no longer the main focus of

>her

>life. That happens to many people. We will deal with that when it happens.

>

>Hopefully she will find new friends to replace the ones she loses.

>

>I work at a center for independent living. I see many adults with

>disabilities, not just those with DS. Their lives in segregated facilities,

>

>nursing homes and group homes are not what I want for my child. The

>limitations placed on their lives because of where they live is not what

>I

>want for my child. The quality of life there is not what I want for my

>

>child. I will continue to work towards something different and hope that

>we

>find the right fit for my child when she is ready to be on her own. You

>are

>right that it is unrealistic to expect our children to function independently

>

>or be accepted by everyone in society. The great thing is that they don't

>

>have to be! In our world today, more than ever before, we see people with

>

>disabilities of all types integrated into society instead of relegated

>to

>institutions as in the past.

>

>All parents adjust their expectations and dreams for their children. That

>is

>a natural process. I sincerely doubt if any parents of a baby with DS

>envision that child living a " normal " life or the options Rick mentioned

>in

>the beginning of his post. But I would also love to think that most of

>those

>parents with the babies want their child to have every opportunity available

>

>and not underestimate their child's abilities. I would never encourage

>a

>parent to lower their expectations based on what my child has experienced.

>I

>would rather encourage parents to have high expectations and work towards

>

>them than look back years later and wish they had done things differently.

>My

>daughter is still achieving remarkable goals (IMO) and I think this

>philosophy contributes to aid in her success.

>

>Education from 20 years ago is irrelevant to me, except in a historical

>

>context. It's what's happening now that counts and what the future brings.

>

>I sincerely hope the young children of today with DS have more and better

>

>educational opportunities than my child did. I hope that improvements

>

>continue and society continues to improve the way they view and treat people

>

>with DS. I hope kids with DS continue to make progress and astound the

>

>world, breaking the " stereotype " barrier until it no longer exists. And

>I

>hope parents continue to work towards these goals on behalf of their children

>

>with the hope that their future will be only better.

>Cheryl in VA

September 27, 2001

In a message dated 9/27/2001 12:04:34 PM US Mountain Standard Time,

Green3@... writes:

> Mom said, " well, she can't be

> down's then " .

>

LOL........and the criteria is changing as our children grow!! Alot of

misdiagnosed kids (and adults) in the world today!!! LOL

September 27, 2001

In a message dated 9/27/2001 12:04:34 PM US Mountain Standard Time,

Green3@... writes:

> Mom said, " well, she can't be

> down's then " .

>

LOL........and the criteria is changing as our children grow!! Alot of

misdiagnosed kids (and adults) in the world today!!! LOL

September 27, 2001

In a message dated 9/27/2001 3:04:48 PM Eastern Daylight Time,

Green3@... writes:

> when I said that was in

> regular education classrooms the mom said, " well she can't read or write " .

> I

> said, " yes, she reads and writes very well " . Mom said, " well, she can't be

> down's then " .

>

I had a mom of a 28 year old more or less ask the same of me in a

conversation awhile back. Her daughter has been going from job to job since

leaving school, all part time food industry. The mom asked me if people

could understand my daughter when she talked and was amazed when I said yes.

Education certainly has room for improvement.

A friend and I were talking today. In VA, they still have categorical labels

for MR kids

EMR ... Educatable and TMR .... Trainable. They don't have similar labels

for any other disability. Why is it only the MR kids they put in a track at

age 5 that they will have to remain in for the rest of their education? We

don't have labels like ELD ... Educatable Learning Disabled ... or TED ...

Trainable Emotionally Disturbed.

There are few textbooks in the MR classes, no access to regular curriculum,

no science or social studies unless parents request it ... and then the

science lesson for four years in a row is plant a seed in a cup of dirt and

watch it sprout. The MR classes go on community learning field trips ... to

Mcs and to the public library (yes, they have libraries in their

school) and to the bowling alley. Time they could be spending on READING and

MATH ... it's so sad to see how much is STILL missing from the education in

those rooms!!

Cheryl in VA

September 27, 2001

In a message dated 9/27/2001 3:04:48 PM Eastern Daylight Time,

Green3@... writes:

> when I said that was in

> regular education classrooms the mom said, " well she can't read or write " .

> I

> said, " yes, she reads and writes very well " . Mom said, " well, she can't be

> down's then " .

>

I had a mom of a 28 year old more or less ask the same of me in a

conversation awhile back. Her daughter has been going from job to job since

leaving school, all part time food industry. The mom asked me if people

could understand my daughter when she talked and was amazed when I said yes.

Education certainly has room for improvement.

A friend and I were talking today. In VA, they still have categorical labels

for MR kids

EMR ... Educatable and TMR .... Trainable. They don't have similar labels

for any other disability. Why is it only the MR kids they put in a track at

age 5 that they will have to remain in for the rest of their education? We

don't have labels like ELD ... Educatable Learning Disabled ... or TED ...

Trainable Emotionally Disturbed.

There are few textbooks in the MR classes, no access to regular curriculum,

no science or social studies unless parents request it ... and then the

science lesson for four years in a row is plant a seed in a cup of dirt and

watch it sprout. The MR classes go on community learning field trips ... to

Mcs and to the public library (yes, they have libraries in their

school) and to the bowling alley. Time they could be spending on READING and

MATH ... it's so sad to see how much is STILL missing from the education in

those rooms!!

Cheryl in VA

September 27, 2001

I did not want to take this out of context, so I only edited part of the

message. The over-optimistic dreams part kinda bugged me. I have dreams

for just like I do for . I can tell by what you wrote that

you have dreams for Jan. I don't think my dreams are over-optimistic. When

he was younger, his IQ was normal. His scores are now in the mild range. I

have had to change things because of reality but I still believe that he can

have some post secondary education, perhaps learn to drive, and hold a job.

I've never expected Dr. Bonorato. I just wanted him to work at

something he found fun. I've only had one job in my life that I've loved

and I just left it in Hawaii. I also think he can have friends who are " his

intellectual peers " and friends who are not. Inclusion has changed the

dynamic somewhat. If we parents (as I do) want a paradigm shift, we have to

continue to have our kids included.

Elaine

Rick Dill <rdill@... wrote: I was trying to relate the adult

outcomes that we have been

> seeing versus the vast over-optimistic dreams of parents.

>

> Social theory is great, but one also needs to look at the reality of

> similar things. I expressed that there has been a major shift among

> those whose parents have gone through the transition to adult-hood. We

> can no longer simply imagine our kids as the perfect employee, but have

> to face the reality that they have some very difficult traits. We can

> no longer look at only the positive elements of their social graces, but

> also at their limits. Sure, those are the same limits we've worked on

> for 25 years, but eventually we have to learn to live with them and work

> to accomodate them.

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

September 27, 2001