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Hi ,

I shall be thinking of you next week as your family goes to Toronto. I

know that having all the kids at once will be stressful, but, if anyone can

do it, you can. My thoughts and prayers shall be with you, Yigal, Avi,

Ziv, and Tom.

I have also found that diversions help us cope with the proximity of

togetherness on days when we are all together at home or on the road.

Rented videos, CD players, Nintendo, books from the library, all help.

Take care.

Louis

harkins@...

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  • 1 year later...

In a message dated 2/1/01 5:00:54 PM Eastern Standard Time, Scherb@...

writes:

<< Well, Leah, it's been a horrible week, stress upon stress. I needed to

cry.

thank you.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

>>

I hope things are going better for you . How about a laugh? I went to

get Seth off the bus last week and the aide had him ready and standing there

waiting for me. I kept thinking his hair was lighter, but went to pick him

up anyway. Well, it wasn't Seth!!! They gave me the wrong kid, which would

have really upset me, but I just started laughing because *I* didn't realize

it the minute I walked on the bus! The kid wasn't even downs. LOL I guess

I just assumed they would give me MY kid. LOL Now you can laugh about how

dumb I am. If anyone hands me a kid and says it's mine, I BELIEVE THEM!!!

LOL Strange thing is, earlier that day I was at a meeting and had to speak

about the incompetence of the bus people. Guess I'll be the subject of the

next meeting...incompetent parents!!! LOL

Gail

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In a message dated 2/2/01 11:50:11 AM Eastern Standard Time,

Scherb@... writes:

<< Gail,

Thanks! In our area we had a large Kmong community. They all seen to

walk with the large family trailing behind Mom and Dad. (Korean) has

been known to just get in line and follow along. He doesn't look Kmong to

me, face is not round anough and different skin coloring. But lots of us

white folk can't tell the difference. And I confess I never could tell the

difference before.

I'll add to that yesterday, one of the other bus drivers was remarking to

Garry how much our Sam has the same mannerisms as Garry. And how Sam

" almost looks Jewish " That got Garry laughing cause Sam is Jewish!! And

we think somewhere back in history Garry's family is too. Yea, a kids is a

kid, who cares what their parentage is! We're all the same inside.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

>>

LOL ! That must be a site to see! LOL Does realize he looks

like the family he is following? Now, I can't for the life of me figure out

how anyone could tell that a ds kid could look Jewish! I'm curious, do you

raise Sam in the Jewish faith, or isn't he aware of that stuff? And, was it

JJ that I recall that used to stick his leg in the broiler? LOL Seems to me

it was one of your kids that did that!

Gail

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Gail,

Thanks! In our area we had a large Kmong community. They all seen to

walk with the large family trailing behind Mom and Dad. (Korean) has

been known to just get in line and follow along. He doesn't look Kmong to

me, face is not round anough and different skin coloring. But lots of us

white folk can't tell the difference. And I confess I never could tell the

difference before.

I'll add to that yesterday, one of the other bus drivers was remarking to

Garry how much our Sam has the same mannerisms as Garry. And how Sam

" almost looks Jewish " That got Garry laughing cause Sam is Jewish!! And

we think somewhere back in history Garry's family is too. Yea, a kids is a

kid, who cares what their parentage is! We're all the same inside.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

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Gail,

We are not sure realizes he look sort of like them. But we have seen

and Timmy(Chinese) look at each other and point to their eyes. So on

some level they are aware.

No Sam is not raised Jewish. We were/are Baptist. When we went that was

what we were. Church is another issue.

Yes JJ was the one who stuck his legs in the broiler regularly. A few years

ago we had an iron rail, counter high put across the kitchen. Keeps all the

kids out.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

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nancy,

can you use that iron rail as an excuse not to enter the kitchen to cook,

clean or mop...... good enough reason to keep this mom out!!!:-) lolo leah

>From: " Scherbert " <Scherb@...>

>Reply-

>

>Subject: Re: 's week

>Date: Fri, 02 Feb 2001 11:00:42 -0800

>

>Gail,

>

>We are not sure realizes he look sort of like them. But we have seen

> and Timmy(Chinese) look at each other and point to their eyes. So on

>some level they are aware.

>

>No Sam is not raised Jewish. We were/are Baptist. When we went that was

>what we were. Church is another issue.

>

>Yes JJ was the one who stuck his legs in the broiler regularly. A few

>years

>ago we had an iron rail, counter high put across the kitchen. Keeps all

>the

>kids out.

>

>

> & Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All

>adopted.

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

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In a message dated 2/2/01 10:20:46 PM Eastern Standard Time,

Scherb@... writes:

<< We are not sure realizes he look sort of like them. But we have seen

and Timmy(Chinese) look at each other and point to their eyes. So on

some level they are aware. >>

,

That is so interesting. Do they also notice other ds kids when you are out,

or are the Asian features more pronounced? I wish you could post a pic of the

kids. Hope I don't get anyone mad here, but..has anyone ever seen a black

ds? I have seen biracial, but never black. I have never seen an Asian one

either, but they exist! Come to think of it, there is only one black kid in

our autistic program. Are these two disorders more prevalent in the

Caucasian group?

Gail

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In a message dated 2/3/01 7:58:00 AM Eastern Standard Time,

smilinggail@... writes:

<< Hope I don't get anyone mad here, but..has anyone ever seen a black

ds? >>

LOLOL Gail. I forget what the percentage it is here in Philly, but we have

a very high African American population, and our little neighborhood here has

a large Asian population also. Yes, I've seen plenty with DS. One of my

role models is an African American single woman who raised her son with DS

totally on her own, put herself through college and has taught me how to be a

true advocate for Maddie. She started the DS suport group in Philly. DS

and autism occurs in all nationalities. I don't think it strikes more in a

particular group. Autism however, does strike more in males.

Donna

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In a message dated 2/3/01 10:23:57 AM Eastern Standard Time,

Scherb@... writes:

<<

DS crosses al races. Yes I have seen several black kids with ds and adults

too. I don't think this list takes pictures and never could figure out the

way you others were doing it. I'll send you some privately later today by

.jpg. Remember my kids are mostly arund ds kids, I don't think they would

notice the difference.

, who finally ot a good night sleep(only up 4 times) and my headache is

gone! >>

,

Mail it to Gail or I and we'll put it on the page for you. I'm sure we'd

all like to see your gang!!

Donna

P.S. Glad you are feeling better......although I wouldn't qualify getting

up 4x through the night as a good rest....LOL

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Gail,

DS crosses al races. Yes I have seen several black kids with ds and adults

too. I don't think this list takes pictures and never could figure out the

way you others were doing it. I'll send you some privately later today by

..jpg. Remember my kids are mostly arund ds kids, I don't think they would

notice the difference.

, who finally ot a good night sleep(only up 4 times) and my headache is

gone!

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

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I also have seen african american's w/ds, and it is

true, Down syndrome is the number one genetic disorder

and is found in all nationalaties, and economic

satures. Like autism, there is a higher majority of

males that are disabled compared to girls due to their

are weaker than girls, we carry much more in that leg

on our x chromosome that they dont have in their y.

This is also why many girl babies have survived

compared to boy babies, but this was more in the past,

nowadays with modern meds and tech boys have come a

long way, but girls still are dominant genetically,

and still many are also disabled.

--- duffey48@... wrote:

> In a message dated 2/3/01 7:58:00 AM Eastern

> Standard Time,

> smilinggail@... writes:

>

> << Hope I don't get anyone mad here, but..has

> anyone ever seen a black

> ds? >>

>

> LOLOL Gail. I forget what the percentage it is

> here in Philly, but we have

> a very high African American population, and our

> little neighborhood here has

> a large Asian population also. Yes, I've seen

> plenty with DS. One of my

> role models is an African American single woman who

> raised her son with DS

> totally on her own, put herself through college and

> has taught me how to be a

> true advocate for Maddie. She started the DS

> suport group in Philly. DS

> and autism occurs in all nationalities. I don't

> think it strikes more in a

> particular group. Autism however, does strike

> more in males.

> Donna

>

>

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Gail ,Here in New Jersey in my grandson s early

intervention group was a little black boy and inthe

support group was another mom with a little girl.In

E.I. there was a little boy who walked very

early and was also a cutie. I looked in the opposite

direction as he strolled the length of the room with

all eyes on him and saw on one pretty black face and

one pretty white face the same IDENTICAL look !!! I

never knew what they were thinking to themselves but i

m sure it was oh go sit down!!The moms were always

very supportive of each other and their kids but for

just that instant the frustration of the slow pace of

their own child really showed.Oddly enough the one who

walked early is lagging behind now.

--- duffey48@... wrote:

> In a message dated 2/3/01 7:58:00 AM Eastern

> Standard Time,

> smilinggail@... writes:

>

> << Hope I don't get anyone mad here, but..has

> anyone ever seen a black

> ds? >>

>

> LOLOL Gail. I forget what the percentage it is

> here in Philly, but we have

> a very high African American population, and our

> little neighborhood here has

> a large Asian population also. Yes, I've seen

> plenty with DS. One of my

> role models is an African American single woman who

> raised her son with DS

> totally on her own, put herself through college and

> has taught me how to be a

> true advocate for Maddie. She started the DS

> suport group in Philly. DS

> and autism occurs in all nationalities. I don't

> think it strikes more in a

> particular group. Autism however, does strike

> more in males.

> Donna

>

=====

Carole, wife of Rich, mom to and , m-i-l to and ,

grandmom to ,8 ,with d.s.and a.s.d. and 6 with adhd and possible

a.s.d.and Logan 2 year old wild child, and Seth 7months old and better known as

the gerber baby!

In the hour of adversity be not without hope for crystal

rain falls from the black clouds

Persian poem

__________________________________________________

Get personalized email addresses from - only $35

a year! http://personal.mail./

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In a message dated 2/3/01 8:16:30 PM Eastern Standard Time, duffey48@...

writes:

<< DS crosses al races. Yes I have seen several black kids with ds and adults

too. I don't think this list takes pictures and never could figure out the

way you others were doing it. I'll send you some privately later today by

.jpg. Remember my kids are mostly arund ds kids, I don't think they would

notice the difference.

, who finally ot a good night sleep(only up 4 times) and my headache is

gone! >> >>

....getting up 4 times in the night is good? LOL That would give me a

splitting headache. Looking forward to the pic! Can't wait to see your

gang. Thanks for the info on ds and races. We don't have a large Asian

population here, but the girls have one Korean friend who went to Polish

lessons with us today. LOL Makes you do a double take to see a Korean kid

speaking Polish! LOL Hope you REALLY get to sleep tonight.

Gail

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In a message dated 2/3/01 6:21:29 PM Eastern Standard Time,

carole9545@... writes:

<< Gail ,Here in New Jersey in my grandson s early

intervention group was a little black boy and inthe

support group was another mom with a little girl.In

E.I. there was a little boy who walked very

early and was also a cutie. I looked in the opposite

direction as he strolled the length of the room with

all eyes on him and saw on one pretty black face and

one pretty white face the same IDENTICAL look !!! I

never knew what they were thinking to themselves but i

m sure it was oh go sit down!!The moms were always

very supportive of each other and their kids but for

just that instant the frustration of the slow pace of

their own child really showed.Oddly enough the one who

walked early is lagging behind now.

>>

Carole,

My curiosity is bubbling over! I am going to have to check around here

again and see how many and what races the ds kids are in my town. I know 4

years ago, none of Seth's therapists had known of any other races of ds in

this area. I actually don't *know* one other person with a ds child. I have

seen three other ds kids in a different program than Seth is in, and a few at

a support group that I went to once, but they were older kids. Gosh, I

guess we do live *out in the boonies* LOL

Gail

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duffy is puting these on the group pictures.

untitled 2 familyu

untitled 3 Timmy

Untitled 0 JJ

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

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Have survieved to what? Not having Down Syndrome or autism? But yea I

agree that mostly boys but a few girls have autism. I hope y'all have a

good day tomorrow and a good week. sorry if I'm not keeping up in reading

my e-mails, I've been babysitting for 13 hours total of yesterday and today,

so between babysitting, schoolwork, sleeping and trying to relax I haven't

been into my e-mails within this weekend.

>From: Green a <mashawnag@...>

>Reply-

>

>Subject: Re: 's week

>Date: Sat, 3 Feb 2001 14:12:42 -0800 (PST)

>

>I also have seen african american's w/ds, and it is

>true, Down syndrome is the number one genetic disorder

>and is found in all nationalaties, and economic

>satures. Like autism, there is a higher majority of

>males that are disabled compared to girls due to their

>are weaker than girls, we carry much more in that leg

>on our x chromosome that they dont have in their y.

>This is also why many girl babies have survived

>compared to boy babies, but this was more in the past,

>nowadays with modern meds and tech boys have come a

>long way, but girls still are dominant genetically,

>and still many are also disabled.

>--- duffey48@... wrote:

> > In a message dated 2/3/01 7:58:00 AM Eastern

> > Standard Time,

> > smilinggail@... writes:

> >

> > << Hope I don't get anyone mad here, but..has

> > anyone ever seen a black

> > ds? >>

> >

> > LOLOL Gail. I forget what the percentage it is

> > here in Philly, but we have

> > a very high African American population, and our

> > little neighborhood here has

> > a large Asian population also. Yes, I've seen

> > plenty with DS. One of my

> > role models is an African American single woman who

> > raised her son with DS

> > totally on her own, put herself through college and

> > has taught me how to be a

> > true advocate for Maddie. She started the DS

> > suport group in Philly. DS

> > and autism occurs in all nationalities. I don't

> > think it strikes more in a

> > particular group. Autism however, does strike

> > more in males.

> > Donna

> >

> >

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In a message dated 2/4/01 12:07:38 AM Eastern Standard Time,

smilinggail@... writes:

<< I actually don't *know* one other person with a ds child. I have

seen three other ds kids in a different program than Seth is in, and a few

at

a support group that I went to once, but they were older kids. Gosh, I

guess we do live *out in the boonies* LOL

Gail >>

LOL You MUST live in the boonies Gail. However, I live in the big city

and the last year that Maddie was in EI, she was the only one out of 65

families in our school to have DS. When we started, she was one of 7.

Donna

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In a message dated 2/3/01 11:41:10 PM Eastern Standard Time,

Scherb@... writes:

<< duffy is puting these on the group pictures.

untitled 2 familyu

untitled 3 Timmy

Untitled 0 JJ

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (3 ds). All adopted.

>>

UGH !!!! I am unable to open your pics. I have a zip decompression

program, but when I pull up your pictures, it's blank. Anybody else wanna

give it a try?!??!!

Sorry !!!

Donna

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  • 1 year later...
Guest guest

Here's an update on 's week at the nearby " day hab " , run by MHMR. NOBODY

the whole week complained ONCE about 's behavior. He wasn't aggressive,

he didn't act out, ate all his lunch without throwing it halfway across the

room, and tidied up the play area every day, without being ASKED!!!

Although there wasn't the structure that a normal school day would have, I

still find it hard to believe that 's such a " wild man " at school! I

wonder if there are some tasks that 's being asked to do that he just

doesn't " get " ??

The one day hab aide says he did do a little bit of " school time " with ,

just one on one and he was able to sit still for about 5-10 minutes at a

time, doing puzzles, playing a board game, working on manipulatives, etc.

This will be interesting when I send a note in 's backpack on Monday

morning and telling her what a WONDERFUL week had! I just KNOW she will

ask whether or not the day was " structured " ......one gal at the day hab

commented, " 's no dummy, he knows where he is loved " .....

Enough said.

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Guest guest

In a message dated 3/14/2002 6:33:59 PM Eastern Standard Time,

Ltb3105@... writes:

> Although there wasn't the structure that a normal school day would have, I

> still find it hard to believe that 's such a " wild man " at school! I

> wonder if there are some tasks that 's being asked to do that he just

> doesn't " get " ??

>

Hi ,

I am always grateful when our kids can spend time in an enviroment that makes

them happy. I have the same problem as you know. I was considering having the

youngest drop out. How about you. LOL

Charlyne

Mom to Zeb 9 DS/OCD ?

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Guest guest

In a message dated 3/15/02 3:18:21 AM Central Standard Time,

writes:

> Here's an update on 's week at the nearby " day hab " , run by MHMR.

> NOBODY

> the whole week complained ONCE about 's behavior. He wasn't

> aggressive,

> he didn't act out, ate all his lunch without throwing it halfway across the

>

> room, and tidied up the play area every day, without being ASKED!!!

>

> Although there wasn't the structure that a normal school day would have, I

> still find it hard to believe that 's such a " wild man " at school! I

> wonder if there are some tasks that 's being asked to do that he just

> doesn't " get " ??

>

> The one day hab aide says he did do a little bit of " school time " with

> ,

> just one on one and he was able to sit still for about 5-10 minutes at a

> time, doing puzzles, playing a board game, working on manipulatives, etc.

>

> This will be interesting when I send a note in 's backpack on Monday

> morning and telling her what a WONDERFUL week had! I just KNOW she

> will

> ask whether or not the day was " structured " ......one gal at the day hab

> commented, " 's no dummy, he knows where he is loved " .....

>

> Enough said.

>

>

>

> ,

I don't understand why the teacher would think that " structure " would cause

's behavior. He did have a routine to follow at the program he was at.

They placed demands on him. Maybe his school is placing too many demands on

him (or over controlling him). Is high demands what she considers structure?

's day has lots of structure but varying amounts of demands depending on

how he is doing.

Karyn

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Guest guest

Re: 's Week

Here's an update on 's week at the nearby " day hab " , run by MHMR. NOBODY

the whole week complained ONCE about 's behavior. He wasn't aggressive,

he didn't act out, ate all his lunch without throwing it halfway across the

room, and tidied up the play area every day, without being ASKED!!!

Although there wasn't the structure that a normal school day would have, I

still find it hard to believe that 's such a " wild man " at school! I

wonder if there are some tasks that 's being asked to do that he just

doesn't " get " ??

The one day hab aide says he did do a little bit of " school time " with ,

just one on one and he was able to sit still for about 5-10 minutes at a

time, doing puzzles, playing a board game, working on manipulatives, etc.

This will be interesting when I send a note in 's backpack on Monday

morning and telling her what a WONDERFUL week had! I just KNOW she will

ask whether or not the day was " structured " ......one gal at the day hab

commented, " 's no dummy, he knows where he is loved " .....

Enough said.

Hey , isn't it nice to hear the positive comments, yeaaaa, I am very happy

all went so well, I agree you should let the school know, I wish they could

figure out, if like you say, they are asking something of him that is

frustrating for him. I know you will figure it out. There is that detective

stuff again, right? Will be praying for you for his appointment, when is it

again? take care, Dawn

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In a message dated 3/15/02 12:11:21 PM Pacific Daylight Time,

writes:

> I don't understand why the teacher would think that " structure " would cause

> 's behavior. He did have a routine to follow at the program he was at.

> They placed demands on him. Maybe his school is placing too many demands

> on

> him (or over controlling him). Is high demands what she considers

> structure?

> 's day has lots of structure but varying amounts of demands depending

> on

> how he is doing.

>

>

Karyn, the thing of it is, is that whenever I tell the school personnel how

well does elsewhere, they really look as though I've just slapped them

in the face.....once they get over the initial shock, then they proceed to

ask me whether had the " run of the place " and did any " structured

activities " !!!!!! How DARE she??!!

's acted up a few times during recess and play time too, so what

difference does it make whether or not it's structured time? They may be

trying to conform into their own little " way " of doing things at school

and simply CANNOT conform!!!! Would any of you be willing to sit for

hours on end doing tasks without a potty break, smoke break, whatever?? I

doubt it. can't either.

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