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In a message dated 3/5/01 12:10:05 PM Eastern Standard Time,

hsmyangels@... writes:

<< I do, however tend to agree. If I had an adult child with Down Syndrome

(or any other mental handicap) that had a mental age of 8, I don't think I

would require him to work. I guess, unless he chose to. I'm looking for

things for my son to be able to do and enjoy that would bring him money.

That's why I'm looking into weaving (he has an obsession with string, and

that's the only thing lucrative I could come up with). I say it depends on

the individual.

Loriann >>

Loriann,

I do wonder if they do have the mentality of an 8 year old, could they even

communicate exactly how they are feeling about work, play, relationships etc.

I know not everyone has that mental age, but everything I am reading says

that is the *average*. That's smart to start looking for things that

enjoys that will be able to be turned into a money making project. I know

that most of the jobs at our local handicap work center are work, not fun. I

just think that is sad. I as a *normal*, well almost LOL, adult don't want

to go to work every day. Doesn't seem to be a happy life to me.

Gail

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In a message dated 3/5/01 1:26:44 PM Eastern Standard Time,

smilinggail@... writes:

<<

Loriann,

I do wonder if they do have the mentality of an 8 year old, could they even

communicate exactly how they are feeling about work, play, relationships

etc.

I know not everyone has that mental age, but everything I am reading says

that is the *average*. That's smart to start looking for things that

enjoys that will be able to be turned into a money making project. I know

that most of the jobs at our local handicap work center are work, not fun.

I

just think that is sad. I as a *normal*, well almost LOL, adult don't want

to go to work every day. Doesn't seem to be a happy life to me.

Gail >>

LOL Gail. One of the other things that are discussed often in the adult

DS world, is that many adults become depressed if they do not have something

worthwhile to do to keep them busy. Even a *typical* 8 yo needs to be kept

active, whether it's school, camp, activities...whatever. I agree with you

on the handicap work centers. Maddie will Never stuff envelopes or staple.

I have no idea what she will do, and honestly, if she gets to the point of

a *mental age* of 8, I'll be thrilled to death. Sounds crazy, but at 7,

we're NOWHERE near that. They've placed Maddie in a six month old to 18

month level according to skills. Maddie may not ever get the concept of

being paid for work you do, but regardless of her age level, she'll always

need to be kept busy and to be praised for her capabilities (even if she

doesn't like the cheers too much now...LOL) I think that the idea is to

give our kids a sense of self-worth, whether it's through work as adults, or

activities and school as children. Also, I think that to say the average age

of adults with DS is 8 years old is not really the same as a *typical* 8 year

old. Skills are scattered, and especially with our kids who have DS and

autism. I have a friend whose sister with DS is 38 years old. We've

always been told that Dolores' *mental age* is that of a 7 year old.

However, Dolores does NOT behave like any 7 yo I know. Yes, she may be on

that reading level, or that math level, or that language level, but she does

things that a 7 yo would not do. This is why I have a hard time using the

words *mental age* because Maddie may be classified that way in some of her

evaluations, but it's not remotely the same. This is why I don't have a

problem with the words mental retardation. I am not offended by them.

They DO describe Maddie.

I think you're right Gail. It is sad that the community centers don't have

more opportunities available for adults with DS.

Donna

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Donna and ,

Maybe I have a misconception of *real* life for adults with ds. We live kind

of backward here, ya know? LOL The adults with ds I have had any connection

with are in residential homes. They leave there in the morning for day

treatment centers. From there they are bussed to the handicapped work

center. *I* don't think they act to happy about it and sometimes they put up

a struggle about getting on the bus. Seems like they have BORING jobs they

have to go to and don't want to go. Why don't they continue to learn new

skills instead? Is that what they do in your areas? , I totally agree

that every member of the family should give their best at everything that is

required, be responsible, morally just and good humans. Each one will,

hopefully attain that, their own special way. Well, I just hope things

change before Seth reaches that age. I just can't imagine him having no

*fun* in his life. Do adults with ds even want to play? I just can't

imagine Seth not wanting to play, but I can't imagine Seth as an adult

either! LOL Do you think emotionally, they are way above 8 and can handle

the adult type life? Donna, Seth has an average level of 20 months, and I

too will be thrilled if he ever reaches 8 years!!!!!! LOL His lowest score

is 0-9 months, but his gross motor skills is at about 24 months. Such a big

difference! Guess all that time at gymnastics has paid off! LOL

Gail

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Down syndrome children are like any other children in regards to their

potential. You can't generalize and say the average age is 8. I've read

articles of Down Syndrome children going to college. That article made me a bit

depressed, as I don't see reaching that level, but I talked to an adult

with Down Syndrome who seemed younger than 8 and was at WalMart by himself.

I do, however tend to agree. If I had an adult child with Down Syndrome (or any

other mental handicap) that had a mental age of 8, I don't think I would require

him to work. I guess, unless he chose to. I'm looking for things for my son to

be able to do and enjoy that would bring him money. That's why I'm looking into

weaving (he has an obsession with string, and that's the only thing lucrative I

could come up with). I say it depends on the individual.

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, PDD-NOS, and celiac disease

And , 20 months and strong-willed

Both homeschooled

See my poems on Themestream:

http://www.themestream.com/gspd_browse/author/view_author_info.gsp?auth_id=97650

Any earnings will go to charity - I have more than are listed when you call up

this

page.

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In a message dated 3/5/01 5:07:58 PM Eastern Standard Time,

ROBLISFISH@... writes:

<< I agree. who says they have to bag groceries!!!! I don't know what they do

in my area but AJ will not be going to a residential center.. he has a home!

>>

Don't you worry about when you're not around anymore? All my kids will

always have a home as long as I have one to give them. Maybe it's like our

other kids and they are ready to go, and we're ready to have them go? I just

can't think at that level with Seth yet. Too scary to think about I guess.

Gail

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I'm thinking that " mentally 8 " and " emotionally 8 " is totally different.

Let's just for a moment say that all of our kids will be " mentally 8 "

when they are 25 years old. I take that as knowing and understanding what

typical 8 year olds know, as far as " reading " " math " etc.... But, since

their physical bodies are 25, they still have the same kinds of " adult "

feelings that other 25 year olds do. I'm thinking they will not have the

same capacity to understand and appreciate right from wrong, the same way

and adult does, but more like a child would.

While I would not think of sending an 8 year old child to work 40 hours a

week, I would (and do)require a certain amount of work from them. They

help around the house, and do their school work. These are their " jobs " .

I'm not sure Matt will be able to work 40 hours a week, but in our

family, I want no less of him than any of our other children-that is that

they are gainfully employed in a suitable occupation to be a

contributing, moral, member of society. I know Matt will need more help

with that, but that doesn't mean that he cannot work, even if he is

" mentally 8 " .

JMHO

S

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I too didn't want my daughter stuffing envelopes or picking up trash downtown

for everyone to witness. This September I started my own program in the ARTS.

I contacted my local art center and got support from local agencies. We now

have 12 students who 5 days a week attend classes in painting, drawing,

crafts, karate, dance, ceramics, photography, singing, music lessons,

computers, cooking, etc. Their progress has been amazing. Some of my

students are in their 40's and had been sitting home for 20 years, others are

just graduating from high school. My daughter is only 14 but I now have peace

that there will be something appropraite in place when she graduates. My

philosophy is, if it doesn't exist, invent it, and never settle for less.

Judy

Adopted mom to (amy 14, ds/adhd/ODD) (sara 15, ds/autistic/blind)

(Marcel 21 ds/ocd) and Roxannne (28, ds and blind)

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In a message dated 3/5/01 8:59:37 PM Eastern Standard Time,

okieleah@... writes:

<< the plan is to

make the basement her apt to share with maybe one or two other girls or

boys.... it has two bedrooms, a full bath, walkout side entrance, family

room and small office.... we could in a smallkitchen and they would be

good.... >>

Hmmmmmmm, got it all planned out do you Leah? LOL Hope you have about 10

plans, cause ya know they keep changing all the time! LOL What will you do

if Ashton DOESN'T want to live with you? What if she WANT'S to move to a

home and bag groceries? Can you imagine life with her all grown up? I can't

begin to with Seth.

Your kids bathroom sounds really nice. Can I sleep in the tub when I come

down? LOL

Gail

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In a message dated 3/5/01 8:29:25 PM Eastern Standard Time, ct616@...

writes:

<< my daughter and son in law want Nick with them unless Nick wants to be in

a group home or supervised apartment. who knows if more independent living

arrangements will even be possible for Nick but the big question is will we

know what he wants? >>

That is scary. Will we know what our kids want, or will we have to do the

trial and error thing even then. That's cool that it will be Nick's choice

as to where he wants to live. A lot of kids probably don't have a choice.

Gail

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I agree. who says they have to bag groceries!!!! I don't know what they do

in my area but AJ will not be going to a residential center.. he has a home!

Re: Menatally 8

> Donna and ,

> Maybe I have a misconception of *real* life for adults with ds. We live

kind

> of backward here, ya know? LOL The adults with ds I have had any

connection

> with are in residential homes. They leave there in the morning for day

> treatment centers. From there they are bussed to the handicapped work

> center. *I* don't think they act to happy about it and sometimes they put

up

> a struggle about getting on the bus. Seems like they have BORING jobs

they

> have to go to and don't want to go. Why don't they continue to learn new

> skills instead? Is that what they do in your areas? , I totally

agree

> that every member of the family should give their best at everything that

is

> required, be responsible, morally just and good humans. Each one will,

> hopefully attain that, their own special way. Well, I just hope things

> change before Seth reaches that age. I just can't imagine him having no

> *fun* in his life. Do adults with ds even want to play? I just can't

> imagine Seth not wanting to play, but I can't imagine Seth as an adult

> either! LOL Do you think emotionally, they are way above 8 and can

handle

> the adult type life? Donna, Seth has an average level of 20 months, and I

> too will be thrilled if he ever reaches 8 years!!!!!! LOL His lowest

score

> is 0-9 months, but his gross motor skills is at about 24 months. Such a

big

> difference! Guess all that time at gymnastics has paid off! LOL

> Gail

>

> http://www.onelist.com/community/

>

>

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In a message dated 3/5/01 9:52:57 PM Eastern Standard Time,

Strider3@... writes:

<< To tell y'all a secret- my mom didn't think I'd be

driving.

>>

,

You should be driving if you know the rules of the road, passed your tests

and are a good driver! I'm sure you must be a good driver, because you are

smart, caring and responsible. Sometimes us Mom's think we know it all! LOL

Gail

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scares me to even think about that stage with Nick...had a hard enough time with

getting married last year! I wish I knew whether or not I'll know what

Nick wants when he is older....that make any sense? when Mike and I are too

decrepit to provide a good home which I hope isn't till i'm around 100 or so, my

daughter and son in law want Nick with them unless Nick wants to be in a group

home or supervised apartment. who knows if more independent living

arrangements will even be possible for Nick but the big question is will we

know what he wants?

Re: Menatally 8

In a message dated 3/5/01 5:07:58 PM Eastern Standard Time,

ROBLISFISH@... writes:

<< I agree. who says they have to bag groceries!!!! I don't know what they do

in my area but AJ will not be going to a residential center.. he has a home!

>>

Don't you worry about when you're not around anymore? All my kids will

always have a home as long as I have one to give them. Maybe it's like our

other kids and they are ready to go, and we're ready to have them go? I just

can't think at that level with Seth yet. Too scary to think about I guess.

Gail

http://www.onelist.com/community/

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i am so glad ya'll can even think about the future...........as i see it

right now, if i make it through tomorrow, heck change that to tonight, then

i am proud of me and proud of them.............. dh forgot to give ashton

her seroquel this am, and didnt tell me until after lunch, to late then to

do anything...........low and behold she has been great today.......go

figure on that one.....took them to red lobster for lobster fest and to a

movie and we are good........and back to biglots........heee i love to

shop........leah

ps my two cents is it will be a cold freezing day in hawaii before ashton

fills salt and pepper shakers, cleans tables or bags groceries for goodwill

or united way.......and as for the home......she has a home...the plan is to

make the basement her apt to share with maybe one or two other girls or

boys.... it has two bedrooms, a full bath, walkout side entrance, family

room and small office.... we could in a smallkitchen and they would be

good....... that is great cause i am sick of carrying the damn vaccuum down

the stairs......they can get their own......ehheheh take care all, leah

>

>Reply-To:

>To: < >

>Subject: Re: Menatally 8

>Date: Mon, 5 Mar 2001 20:25:25 -0500

>

>scares me to even think about that stage with Nick...had a hard enough time

>with getting married last year! I wish I knew whether or not I'll

>know what Nick wants when he is older....that make any sense? when Mike

>and I are too decrepit to provide a good home which I hope isn't till i'm

>around 100 or so, my daughter and son in law want Nick with them unless

>Nick wants to be in a group home or supervised apartment. who knows if

>more independent living arrangements will even be possible for Nick but

>the big question is will we know what he wants?

>

>

>

> Re: Menatally 8

>

>

>In a message dated 3/5/01 5:07:58 PM Eastern Standard Time,

>ROBLISFISH@... writes:

>

><< I agree. who says they have to bag groceries!!!! I don't know what they

>do

>in my area but AJ will not be going to a residential center.. he has a

>home!

> >>

>Don't you worry about when you're not around anymore? All my kids will

>always have a home as long as I have one to give them. Maybe it's like our

>other kids and they are ready to go, and we're ready to have them go? I

>just

>can't think at that level with Seth yet. Too scary to think about I guess.

>Gail

>

> http://www.onelist.com/community/

>

>

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judith,

wow you amaze me just like nancy does to have more than 1 specialneeds kid

would be overwhelming..uhoh i am overwhelmed now.heheeh that is great you

started a program for the adults...the future scares me... ikes..i am offto

hotbath....leah

>

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Leah,

I can think of the future because I guess I'm

still young- and I want everything to be perfect and

not keep on getting worse and everything bad happening

in my life right now.

=====

Friends Till The End

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rebecca,

you poor dear!!! you hang in there and draw strength from this list as we

reach our arms out to hug you and close your eyes and feel our prayers

coming into your soul....we are there for you,feel free to vent away as the

rest of us do...your in thoughts...leah

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I think about all the kids that I babysitt- especially

those with autism. I think about when their in high

school if their going to work, or if their going to

college, in fact how are they going to be independent.

It kindof scares me but I'm only babysitting them and

their not my children to worry about.

To tell y'all a secret- my mom didn't think I'd be

driving.

=====

Friends Till The End

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Gail,

Yea mothers tend to worry to much about their

children, but that's part of their job. But even when

I was an infant due to my ld, my mom didn't think I'd

be able to drive. I guess.

Yea I did finally start driver's ed like when I

was 17, then I have a car. Yea I'm a good driver.

Thanks for the complement.

> ,

> You should be driving if you know the rules of the

> road, passed your tests

> and are a good driver! I'm sure you must be a good

> driver, because you are

> smart, caring and responsible. Sometimes us Mom's

> think we know it all! LOL

>

> Gail

>

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gail,

you can sleep in the kid's tub anytime you wish.......... i don't know why

they have the nicest dang tub in the house..... lolol guess cause it's the

first one we remodeled.....dh said hes not anxious to start another

one...hehe i have fun tearing out the drywall, but putting the new floors in

are hard... dh says i don't use the level correctly...hehe maybe that is

what is wrong with my life.i don't use a leveler.......... hehe anyways, my

doors are always open to anyone......you can hide in the guest room

downstairs and noone would ever bother you...... hehehe as for ms. ashton,

well if she really had high hopes of bagging groceries, iw ould support her

100% but at the same time, i would cut out want ads and leave byher cereal

bowl every morning......heehehhe if she chooses to move out more power to

her, but she better be prepared to have a couch for her mommy at a moments

notice.......hehe leah

>From: smilinggail@...

>Reply-To:

>To:

>Subject: Re: Menatally 8

>Date: Mon, 5 Mar 2001 21:27:11 EST

>

>In a message dated 3/5/01 8:59:37 PM Eastern Standard Time,

>okieleah@... writes:

>

><< the plan is to

> make the basement her apt to share with maybe one or two other girls or

> boys.... it has two bedrooms, a full bath, walkout side entrance, family

> room and small office.... we could in a smallkitchen and they would be

> good.... >>

>

>Hmmmmmmm, got it all planned out do you Leah? LOL Hope you have about 10

>plans, cause ya know they keep changing all the time! LOL What will you

>do

>if Ashton DOESN'T want to live with you? What if she WANT'S to move to a

>home and bag groceries? Can you imagine life with her all grown up? I

>can't

>begin to with Seth.

>Your kids bathroom sounds really nice. Can I sleep in the tub when I come

>down? LOL

>Gail

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In a message dated 3/5/01 3:13:19 PM Eastern Standard Time,

smilinggail@... writes:

<< The adults with ds I have had any connection

with are in residential homes. They leave there in the morning for day

treatment centers. From there they are bussed to the handicapped work

center. *I* don't think they act to happy about it and sometimes they put

up

a struggle about getting on the bus. Seems like they have BORING jobs they

have to go to and don't want to go. Why don't they continue to learn new

skills instead? Is that what they do in your areas? >>

Gail,

I agree that there is something very wrong with this picture. And as

some others on this list have said, I too feel that Maddie has a home. I'm

not close-minded to residential placement/group living and I would consider

it if Maddie were unhappy and that were deemed a better situation. My

friend's sister lives in a residential home because she was becoming

depressed at home and the family felt she needed to be among her peers. They

say Dolores loves it. For them, this was a good choice. My goal is to do

the very best thing for Maddie, and all the kids. The only experience I

have had with residential placement is Melmark and those that work in the

adult program there LOVE it. I've told you guys before the type work they

do. Duff and I do think about the future (sometimes...LOL) and if Maddie

could *work* there at MM, we'd do it. They have an adult day program that

we'd be interested in, and she could come home at the end of the day. Who

knows.....it's so far off and I haven't the slightest clue what her

capabilities will be. But I do know that I like what I see there for adults.

Donna

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In a message dated 3/5/01 9:12:54 PM Eastern Standard Time,

Judithrehling@... writes:

<< Their progress has been amazing. Some of my

students are in their 40's and had been sitting home for 20 years, others

are

just graduating from high school. >>

Judy,

That's fabulous!!! How ingenius you are!!! We have a place here in

Philly called Carousel House and it's essentially a rec center for the

disabled. However, they do have arts and crafts. It's a good program that

many adults with disabilities are involved in. Now, thinking out loud

here......... is it possible to sell the wares your students make? My BIL

was involved with a group called Special Arts (I think). It was started by

one of the Kennedys (I think Ethel, or her son) They made X-mas decorations

that we purchased YEARS ago (long before Maddie was born) to support the

program. I'm telling you, these ornaments are gorgeous!!!! I'm not

thinking in terms of a profit, so much as validation for the students and

their work. Naturally they don't do that at Carousel House since it's a

city-run recreational center, but they do do it at Maddie's school. Plus,

maybe it'd be enough for added expenses that might not be covered in certain

funding.

You're amazing!!! Keep posting those great ideas!!!! If we ever decide to

do something along these lines, I know who to go to for help.....:)

Donna

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I've been thinking about this topic and all the adults with DS I've met and

worked with.

It is difficult to use any one age to describe an adult with DS. Many are a

tad immature in their actions. It's a lot of work to act like the world

expects adults to act. Some can do it when their guard is up, and then when

they're in a safe, private place (with trusted friends) you find out that

it's a lot of work...... I've spent evenings in the hallway of hotels

putting temporary tatoos on ankles.... I have to say, it is refreshing for

me to be in that company. I have to worry less about my hair and makeup and

wardrobe and more about being a honest person. Honesty is something that

I've seen them look for in those of us wihtout ds.

But...even folks who have trouble communicating and would " test " at a very

young ability level seem to know that a) adults have jobs and B) they are

an adult. How responsible they are about it may vary. And don't we all

deserve jobs we'll enjoy? So, although functioning level is an issue, for

those who are aware of the world around them (which has to be the vast

majority), if they're an adult, they will want some semblance of an " adult

life. " Along with lip sinking to Grease sound track and washable tattoos.....

Does that make sense?

j

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In a message dated 3/5/01 5:24:37 PM Eastern Standard Time,

smilinggail@... writes:

<< Don't you worry about when you're not around anymore? All my kids will

always have a home as long as I have one to give them. Maybe it's like our

other kids and they are ready to go, and we're ready to have them go? I

just

can't think at that level with Seth yet. Too scary to think about I guess.

Gail >>

I do Gail. I remember when Maddie was born, I cried for my other kids as

well as for her. Duff really has a totally different outlook. He comes from

a family of 8 kids and was raised differently than me. His family had faced

issues and they were all taught to step to the plate, no matter what. You

deal with the cards you're dealt, is his attitude, and count your blessings.

I've had discussions along these lines with , Joe and n, (Alison

is too young to have this kind of discussion, I think--not good to talk about

Mommy and Daddy not being here with an 8 yo) and they don't understand my

fears. When I ask them about how they feel regarding Maddie when Duff and I

are gone, they say " so what " . They truly do have arguments over who will

watch over her. Of course, they still think of her as Baby Maddie, even at

7. I, naturally, am more realistic and think of things like their life's

dreams and spouses and their own families. n had said to me... " Mom,

why would I marry someone who didn't love Maddie " . It does help me to know

of others who've gone before us and see how they are making it work. And we

do have a will and it's stated who will take Maddie and our other kids if

something happens to us. We have spoken with Duff's brother and wife about

it, and feel good about our choice. While no one else on the planet can

love your kids like you do, we feel they come the closest. Yes, these are

all scary thoughts, but we do need to think of them.

I am enjoying this thread guys, because I think I'm getting a great deal of

*food for thought* from all of you!! It's very interesting!!

Donna

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Not to sound odd of the bunch but i would be happy if nathan is able to work

at our local Hy-Vee, intead of at the recycle center or workshop, where the

majority of the disabled work counting cans, correlating papers, counting

nuts and bolts, making pins, etc, they only get payed per item, My Dh and me

both worked at the local hy-vee when in high school, and we know many there

still, its a very nice place, I hate to think nahtan will never be any

smarter, or cognitionly wise than my 8yr old i have now, nathan isnt to far

behind him accademically, he is learning to read too, just at a slower rate,

the same goes for math concepts. But will be will be i guess i will have to

wait and see and pray that he is able to take part in life, and express his

joys and sadnesses. shawna.

>

>Reply-To:

>To: < >

>Subject: Re: Menatally 8

>Date: Mon, 5 Mar 2001 17:03:41 -0500

>

>I agree. who says they have to bag groceries!!!! I don't know what they do

>in my area but AJ will not be going to a residential center.. he has a

>home!

>

> Re: Menatally 8

>

>

> > Donna and ,

> > Maybe I have a misconception of *real* life for adults with ds. We live

>kind

> > of backward here, ya know? LOL The adults with ds I have had any

>connection

> > with are in residential homes. They leave there in the morning for day

> > treatment centers. From there they are bussed to the handicapped work

> > center. *I* don't think they act to happy about it and sometimes they

>put

>up

> > a struggle about getting on the bus. Seems like they have BORING jobs

>they

> > have to go to and don't want to go. Why don't they continue to learn

>new

> > skills instead? Is that what they do in your areas? , I totally

>agree

> > that every member of the family should give their best at everything

>that

>is

> > required, be responsible, morally just and good humans. Each one will,

> > hopefully attain that, their own special way. Well, I just hope things

> > change before Seth reaches that age. I just can't imagine him having no

> > *fun* in his life. Do adults with ds even want to play? I just can't

> > imagine Seth not wanting to play, but I can't imagine Seth as an adult

> > either! LOL Do you think emotionally, they are way above 8 and can

>handle

> > the adult type life? Donna, Seth has an average level of 20 months, and

>I

> > too will be thrilled if he ever reaches 8 years!!!!!! LOL His lowest

>score

> > is 0-9 months, but his gross motor skills is at about 24 months. Such a

>big

> > difference! Guess all that time at gymnastics has paid off! LOL

> > Gail

> >

> > http://www.onelist.com/community/

> >

> >

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In a message dated 3/6/01 9:28:21 AM Eastern Standard Time, jmedlen@...

writes:

<< I have to say, it is refreshing for

me to be in that company. I have to worry less about my hair and makeup and

wardrobe and more about being a honest person. Honesty is something that

I've seen them look for in those of us wihtout ds.

>>

Joan,

Do you know why they look for honesty in non ds people? I have such a

misconception of this whole adult thing I guess. I thought they were very

loving and trusting, even gullible to a fault. How can they tell honesty

from shinola? Honesty as in acceptance and treating them like adults, or

real true honesty as in always telling the truth and things like that? This

is so interesting!

Gail

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