What do you say to strangers

[Guest guest]

Kim,

I guess it would be hard since the kids are identical. and

Wes are (maternal if you will). Wes weighs 54lbs and ?

She is three inches taller than Wes.

If strangers ask, I'd just give them some brief info. You may never

see them again.

I know folks look at Wes when he eats out, drools etc. Somedays it

hits me harder than others. If others ask and I am in a mood for

no tolerance Watch Out. I'll tell them. Do you ever get like that?

Most of the time I just say they are twins. I let it go .

One day I had to wait at the hospital for meds. Two men were talking

to me. Wes was playing around. One man said that his son had CP. We

had some common ground in the discussion. The other guy just listened.

I told the other man that I also taught Special Ed. He said, " Then I

guess you know what it means to take care of your son. " I have heard

that comment before. Sometimes it makes me angry. I didn't ask for

Wes to be the way he is. I just calmly said, " I guess so. "

Sorry I'm getting off on a Rabbit's trail.

Anyway, just give them some info if it is really necessary.

I HOPE YOU HAVE A GREAT HOLIDAY. WISH I LIVED CLOSER. MY PARENTS

live 3 hours from Washington.

I use to live Arlington,VA. Make sure you get to the National Arboretum,

near the Capitol. It is really pretty.

To bad that the Pandas are no longer alive at the Zoo. They were neat

to observe.

You'll have fun.

Need to run. Spring Break here. Spring Cleaning.

Thanks to all who read this.

Patty, mom to Wes, CP/BPP drooling, speech delayed, seizures, etc.

>

>Reply-To: polymicrogyriaegroups

>To: <polymicrogyriaegroups>

>Subject: What do you say to strangers

>Date: Mon, 17 Apr 2000 11:12:11 -0400

>

>Hello All,

>

>I've got some topics for discussion.

>

>I've got twins and I'm always getting " How far apart are they? " and " One is

>smaller than the other? " (As if I hadn't noticed! :0 )

>

>so most strangers don't really want an hour lecture on PMG so I've been

>trying to come up with a quick/easy answer.

>

>My sister said I should say " You're right! Teddy is smaller than Hunter "

>and leave it at that, but I think we should be open to educating others on

>PMG and also they might have a handicapped child themselves and were

>wondering about Teddy but afraid to ask.

>

>So here's the one I'm currently trying:

>

> " Yes, Teddy is smaller because he's got a brain abnormality and has trouble

>eating " I've tried saying he's got " PMG " or " Polymicrogryia " but I

>practically have to spell it for them and that gets ackward.

>

>

>Any suggestions?

>

>Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG)

>He uses sign language, runs around, rides a big wheel,

>has trouble chewing & swallowing solid foods,

>has 1 identical twin (without PMG), 2 big brothers

>and a busy Daddy. We live in CT.

>

>

>

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[Guest guest]

Kim,

I guess it would be hard since the kids are identical. and

Wes are (maternal if you will). Wes weighs 54lbs and ?

She is three inches taller than Wes.

If strangers ask, I'd just give them some brief info. You may never

see them again.

I know folks look at Wes when he eats out, drools etc. Somedays it

hits me harder than others. If others ask and I am in a mood for

no tolerance Watch Out. I'll tell them. Do you ever get like that?

Most of the time I just say they are twins. I let it go .

One day I had to wait at the hospital for meds. Two men were talking

to me. Wes was playing around. One man said that his son had CP. We

had some common ground in the discussion. The other guy just listened.

I told the other man that I also taught Special Ed. He said, " Then I

guess you know what it means to take care of your son. " I have heard

that comment before. Sometimes it makes me angry. I didn't ask for

Wes to be the way he is. I just calmly said, " I guess so. "

Sorry I'm getting off on a Rabbit's trail.

Anyway, just give them some info if it is really necessary.

I HOPE YOU HAVE A GREAT HOLIDAY. WISH I LIVED CLOSER. MY PARENTS

live 3 hours from Washington.

I use to live Arlington,VA. Make sure you get to the National Arboretum,

near the Capitol. It is really pretty.

To bad that the Pandas are no longer alive at the Zoo. They were neat

to observe.

You'll have fun.

Need to run. Spring Break here. Spring Cleaning.

Thanks to all who read this.

Patty, mom to Wes, CP/BPP drooling, speech delayed, seizures, etc.

>

>Reply-To: polymicrogyriaegroups

>To: <polymicrogyriaegroups>

>Subject: What do you say to strangers

>Date: Mon, 17 Apr 2000 11:12:11 -0400

>

>Hello All,

>

>I've got some topics for discussion.

>

>I've got twins and I'm always getting " How far apart are they? " and " One is

>smaller than the other? " (As if I hadn't noticed! :0 )

>

>so most strangers don't really want an hour lecture on PMG so I've been

>trying to come up with a quick/easy answer.

>

>My sister said I should say " You're right! Teddy is smaller than Hunter "

>and leave it at that, but I think we should be open to educating others on

>PMG and also they might have a handicapped child themselves and were

>wondering about Teddy but afraid to ask.

>

>So here's the one I'm currently trying:

>

> " Yes, Teddy is smaller because he's got a brain abnormality and has trouble

>eating " I've tried saying he's got " PMG " or " Polymicrogryia " but I

>practically have to spell it for them and that gets ackward.

>

>

>Any suggestions?

>

>Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG)

>He uses sign language, runs around, rides a big wheel,

>has trouble chewing & swallowing solid foods,

>has 1 identical twin (without PMG), 2 big brothers

>and a busy Daddy. We live in CT.

>

>

>

>------------------------------------------------------------------------

>Get paid for the stuff you know!

>Get answers for the stuff you don’t. And get $10 to spend on the site!

>http://click./1/2200/3/_/594487/_/955984424/

>------------------------------------------------------------------------

>

>

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[Guest guest]

Kim,

I guess it would be hard since the kids are identical. and

Wes are (maternal if you will). Wes weighs 54lbs and ?

She is three inches taller than Wes.

If strangers ask, I'd just give them some brief info. You may never

see them again.

I know folks look at Wes when he eats out, drools etc. Somedays it

hits me harder than others. If others ask and I am in a mood for

no tolerance Watch Out. I'll tell them. Do you ever get like that?

Most of the time I just say they are twins. I let it go .

One day I had to wait at the hospital for meds. Two men were talking

to me. Wes was playing around. One man said that his son had CP. We

had some common ground in the discussion. The other guy just listened.

I told the other man that I also taught Special Ed. He said, " Then I

guess you know what it means to take care of your son. " I have heard

that comment before. Sometimes it makes me angry. I didn't ask for

Wes to be the way he is. I just calmly said, " I guess so. "

Sorry I'm getting off on a Rabbit's trail.

Anyway, just give them some info if it is really necessary.

I HOPE YOU HAVE A GREAT HOLIDAY. WISH I LIVED CLOSER. MY PARENTS

live 3 hours from Washington.

I use to live Arlington,VA. Make sure you get to the National Arboretum,

near the Capitol. It is really pretty.

To bad that the Pandas are no longer alive at the Zoo. They were neat

to observe.

You'll have fun.

Need to run. Spring Break here. Spring Cleaning.

Thanks to all who read this.

Patty, mom to Wes, CP/BPP drooling, speech delayed, seizures, etc.

>

>Reply-To: polymicrogyriaegroups

>To: <polymicrogyriaegroups>

>Subject: What do you say to strangers

>Date: Mon, 17 Apr 2000 11:12:11 -0400

>

>Hello All,

>

>I've got some topics for discussion.

>

>I've got twins and I'm always getting " How far apart are they? " and " One is

>smaller than the other? " (As if I hadn't noticed! :0 )

>

>so most strangers don't really want an hour lecture on PMG so I've been

>trying to come up with a quick/easy answer.

>

>My sister said I should say " You're right! Teddy is smaller than Hunter "

>and leave it at that, but I think we should be open to educating others on

>PMG and also they might have a handicapped child themselves and were

>wondering about Teddy but afraid to ask.

>

>So here's the one I'm currently trying:

>

> " Yes, Teddy is smaller because he's got a brain abnormality and has trouble

>eating " I've tried saying he's got " PMG " or " Polymicrogryia " but I

>practically have to spell it for them and that gets ackward.

>

>

>Any suggestions?

>

>Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG)

>He uses sign language, runs around, rides a big wheel,

>has trouble chewing & swallowing solid foods,

>has 1 identical twin (without PMG), 2 big brothers

>and a busy Daddy. We live in CT.

>

>

>

>------------------------------------------------------------------------

>Get paid for the stuff you know!

>Get answers for the stuff you don’t. And get $10 to spend on the site!

>http://click./1/2200/3/_/594487/_/955984424/

>------------------------------------------------------------------------

>

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hello All,

I've got some topics for discussion.

I've got twins and I'm always getting " How far apart are they? " and " One is

smaller than the other? " (As if I hadn't noticed! :0 )

so most strangers don't really want an hour lecture on PMG so I've been

trying to come up with a quick/easy answer.

My sister said I should say " You're right! Teddy is smaller than Hunter "

and leave it at that, but I think we should be open to educating others on

PMG and also they might have a handicapped child themselves and were

wondering about Teddy but afraid to ask.

So here's the one I'm currently trying:

" Yes, Teddy is smaller because he's got a brain abnormality and has trouble

eating " I've tried saying he's got " PMG " or " Polymicrogryia " but I

practically have to spell it for them and that gets ackward.

Any suggestions?

Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG)

He uses sign language, runs around, rides a big wheel,

has trouble chewing & swallowing solid foods,

has 1 identical twin (without PMG), 2 big brothers

and a busy Daddy. We live in CT.

[Guest guest]

<< I told the other man that I also taught Special Ed. He said, " Then I

guess you know what it means to take care of your son. " >>

Patty,

Don't you love that. I get a lot of similar comments....like isn't

lucky to have me....and don't I know exactly what to do.... In the

beginning, I was out of my mind trying to be mommy, teacher, pt, ot, speech

therapist etc. I was so stressed. Just because we know what to do doesn't

mean we don't need help. I want to be mommy, that's it. I know that's not

realistic, but somedays I do let myself just be mommy. I try really hard not

to feel guilty if I'm not doing something educational all day everyday.

Sometimes likes to do nothing!

Now that 's getting bigger, people are noticing that there's a

problem. To tell the true, we are just starting to tell our neighbors (only

a couple really knew what we going on). I just found it so hard to discuss.

Only now am I getting to the point where I can have this conversation without

breaking down. Boy, acceptance is tough. I think I've decided that I'd

really like to have another child but I won't do it until I feel like there's

some peace in my heart.

Well, hope everyone's having a good day.

Joanne, New York

[Guest guest]

Joane,

Thanks for your note. I wonder how many of us in the group get the

same kind or similiar kind of remarks.

Need to run for now and fix dinner.

Love to all there.

Patty

>From: BenjaboyD@...

>Reply-To: polymicrogyriaegroups

>To: polymicrogyriaegroups

>Subject: Re: What do you say to strangers

>Date: Mon, 17 Apr 2000 16:45:09 EDT

>

>

>

>

><< I told the other man that I also taught Special Ed. He said, " Then I

>

>guess you know what it means to take care of your son. " >>

>

>Patty,

>

>Don't you love that. I get a lot of similar comments....like isn't

>

>lucky to have me....and don't I know exactly what to do.... In the

>beginning, I was out of my mind trying to be mommy, teacher, pt, ot, speech

>therapist etc. I was so stressed. Just because we know what to do doesn't

>mean we don't need help. I want to be mommy, that's it. I know that's not

>realistic, but somedays I do let myself just be mommy. I try really hard

>not

>to feel guilty if I'm not doing something educational all day everyday.

>Sometimes likes to do nothing!

>

>Now that 's getting bigger, people are noticing that there's a

>problem. To tell the true, we are just starting to tell our neighbors

>(only

>a couple really knew what we going on). I just found it so hard to

>discuss.

>Only now am I getting to the point where I can have this conversation

>without

>breaking down. Boy, acceptance is tough. I think I've decided that I'd

>really like to have another child but I won't do it until I feel like

>there's

>some peace in my heart.

>

>Well, hope everyone's having a good day.

>

>Joanne, New York

>

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>

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[Guest guest]

Great topic, Kim!

I've only recently been able to come up with something I feel

comfortable with. In the beginning, I couldn't help but fumble my

way through saying too much, not saying anything at all, not feeling

okay about talking, and feeling that all I wanted to do was talk

about it.

Now, I say that she has a form of CP. Most everyone seems to know

what CP is and if they want to know more, they ususally ask or hint

around at it. The tough part is when they don't really come out and

ask " what's wrong with her? " because of course that's not nice. They

just look a little longer and have an awkward silence (I think that's

when they are trying to figure out what to say). And then there are

others who just don't have a clue. Here she is in a strange looking

push-chair, not walking, not talking, has a big head, drools, has

spastic legs and hands, and they are shocked to hear she is

disabled. It's just a crap shoot out there.

Some folks are smart about disabilities and others are, well,

disabled when it comes to it all. Mostly, I'm compassionate about

others being uncomfortable with talking about but then there

are times I let them stew in their own mess. It all depends on my

frame of mind and their attitude.

The best to talk to are other kids. They get right to the

point. " Why is she in that chair? " " Can she walk? " " Can she talk

yet? " " Why not? " I tell them she will take a bit longer to do those

things because she's disabled. So far that's all I've had to say.

Then I get these stories about how they go to school with so and so

who is disabled and on and on... I love it. Lots of adults are good

at talking about it but kids are definetly the best. I've learned

alot from their responses.

('s mommy)

ps - I like your sister (or was it sister-in-law's response) Yes, he

is smaller. stew... stew... stew... he, he, he....