Re: what do you say???.....

[Guest guest]

Maybe it's the time of year, spring and all. The other night at Kristi's

music show, did something that he hasn't done in years. He broke

away and took off. , Kristi, and me chased him as he dodged six cars

in the high school parking lot. Thankfully he made it safely to our vehicle

which was parked about a block from the door of the school. and I

both had a good talk with him and when I took him to the grocery store the

other night, he made it a point to hold my hand all the way in and out.

Dad to , Kristi, (all three Ds) and (Cri du chat)

Husband to C.

Re: what do you say???.....

> Lately, Nic has been especially " active " (to put it nicely). yesterday in

the post office, he was just plain out of control. He actually ran out two

sets of doors and was heading for the parking lot. I was at the window at

the time and just dropped everything and ran after him. I really thought the

doors were too heavy for him to push open but I was wrong. Anyway , everyone

was looking (you know the routine) so I just said " He's a 2 year old in a 5

year old body " .

> Di

>

>

>

>

[Guest guest]

What is it about the post office! Last time I was there, arms full of

stuff, my 2 year old took off towards the doors. Now mind you, there was a

line so long that it was going out the door so the doors were sorta open

(with people standing there), so we'd be waiting a long time. I was at the

very front of the line, so like Di, had to drop everything to chase this

child who was heading towards the parking lot at top speed. On the way

back, I counted... she ran past over 20 people, and not one person thought

to stop her (and they saw, because they were all glaring at me with that

" bad parent " look!) Maybe I'm more sensitive since I have two " runners " ,

but I'll stop any little kid running towards danger, THEN look around to see

where the parent is.

, mom to (6), (4 DS), and (2)

[Guest guest]

That's good Kerrie, I love it. Jessie

[Guest guest]

In a message dated 3/28/2002 11:42:28 AM Eastern Standard Time,

b4alltoday@... writes:

<< Sooooo

many of our " starers " just know someone or have had someone with DS touch

their lives >>

So True. So if you see anyone staring at you in NY it might just be one of

my family who love to see and meet other folks with DS.

Kathy, Liam's mom (almost 4)

[Guest guest]

Now that my daughter is older, if there are times when we catch someone

staring we handle things a little differently than we did when she was

younger. If they continue, we loudly talk about how rude some people are,

and may even continue our comments along that line loud enough to be

overheard by the person. A few times I have suggested we stare back ... and

we do so, quite obviously.

Cheryl

[Guest guest]

I had an interesting experience the other day, forgive me if I have already told

this story, i've been away and I have forgotten where I left off! Anyway, tim

went ice skating and in this special needs world he was a part of for the time

there he was by far the most able child there. Kind of put his disability into

perspective for me! Anyway, this group of adults came in with varying degrees

of learning and physical problems. One chap of about 20 ish was profoundly

disabled, holding a rattle and chewing it, rocking in his wheelchair, drooling,

making funny noises. Well, Tim stood there with his mouth open, totally gob

smacked. He has never met close up someone so very different to himself.

Eventually I told him that if he wanted to go say hi to the man then that was

fine, but that to stare is rude after all tim doesn't like to be stared at. He

stopped staring but wouldn't say hello. After being on the receving end of

stares for the last 7 years, mostly curiosity and 'ahh' type stares, it was a

novelty to have to tell tim it was rude!!

sue wong

Re: what do you say???.....

Now that my daughter is older, if there are times when we catch someone

staring we handle things a little differently than we did when she was

younger. If they continue, we loudly talk about how rude some people are,

and may even continue our comments along that line loud enough to be

overheard by the person. A few times I have suggested we stare back ... and

we do so, quite obviously.

Cheryl

[Guest guest]

Welcome back Sue I didn't hear this story yet. It is interesting! lol

Ted will point and stare and anyone different. He even laughed at a man

that was walking very differently. I continue to remind him not to point or

laugh at anyone different.

Gail

<<I had an interesting experience the other day, forgive me if I have

already told this story, i've been away and I have forgotten where I left

off! Anyway, tim went ice skating and in this special needs world he was a

part of for the time there he was by far the most able child there. Kind of

put his disability into perspective for me! Anyway, this group of adults

came in with varying degrees of learning and physical problems. One chap of

about 20 ish was profoundly disabled, holding a rattle and chewing it,

rocking in his wheelchair, drooling, making funny noises. Well, Tim stood

there with his mouth open, totally gob smacked. He has never met close up

someone so very different to himself. Eventually I told him that if he

wanted to go say hi to the man then that was fine, but that to stare is rude

after all tim doesn't like to be stared at. He stopped staring but wouldn't

say hello. After being on the receving end of stares for the last 7 years,

mostly curiosity and!

'ahh' type stares, it was a novelty to have to tell tim it was rude!!

sue wong>>

[Guest guest]

In a message dated 3/23/2002 12:49:32 PM US Mountain Standard Time,

loree5@... writes:

> Does anyone have any input on this subject?

>

>

Sorry i'm responing so late. Busy busy!!! My ny is 1 year now. he is

still tiny, compared to most babies. He's 17 lbs & about 29 inches. His

stature is very " petite " shall i say. People ask me all the time " how old is

your baby?? No he's not that old. He's just so tiny. What a beautiful baby. "

i always say thank you. I think he's gorgeous. Sometimes i tell people he has

Down syndrome. Sometimes i don't. it all depends on my mood for the day.

Thank fully i haven't had any negative things said to me. Not intentionally.

I would go with your gut feeling. You don't have to announce things to

people, unless you feel the need to. Anyway, who cares about what others

think?? She is your beautiful little angel either way.

{{ DeStefano{{

{ Mommy to: Lynn & {

{{{{{{{{{{{{{{{{{{{{{{{

[Guest guest]

In a message dated 4/14/02 11:51:17 PM Central Daylight Time,

Michdock@... writes:

> If I had felt he was more open to things....I might have opened myself up to

>

> him a bit more,,,,but I didn't....and this is the same attitude we take

> with

> Maverick and his down syndrome.... we share what we want to who we want.

>

>

My idea exactly!!!! Jessie

[Guest guest]

I did not know in advance as you do, but one thing that helped me when I had

, was that I talked to my best friend and she told everyone at work

that I was happy about the news and ended up fielding most of the questions.

She could answer less emotionally than I could. If you have someone like that

it helps (it doesn't have to be your best friend, any friend who is

particularly gossipy and likely to spread the word anyway will do. By the

time I was able to go back to work, church, etc., people were more used to

the idea. I think it is easier to field questions when you have a baby in

your arms that you are very happy about.

In your situation, where people feel free to offer you their values on

abortion or who should be permitted in your family, I can see were it would

be more difficult. I do have some ideas you may or may not find helpful.

Option 1 - Shut down conversation nicely, but firmly

If you don't want to particularly share your viewpoint in detail, you could

just say " thank you for your input, my husband and I have worked hard to come

to a decision that we feel is right for us and our family. We are happy

anticipating the joy this new child will bring to our family. " If you can

say the thank you part without being sarcastic, it sometimes helps normally

sensitive people who have had a temporary lapse realize what they have done.

It also lets them know firmly that a decision has already been made, so there

is no point in debating it with you.

Option 2 - Friendly Follow-On

If it is someone you like or someone who genuinely cares for you, you can add

whatever details you want, (we really struggled with this decision, we talked

to other parents of DS children (including ones with heart problems) and we

love the DS child just as we would any other child, etc.), we know that this

child may have different issues than some other children and we are hoping to

have your support.

Option 3 - Avoid Answering

If you are looking to avoid answering their questions, reply with a question

not with an answer , (after all anyone who is offering you guidance must be

doing so based upon some kind of expertise right)?

=Oh, I can see you have given this a lot of thought, have you been in this

situation yourself? Truly bitchy question, could make an enemy for life.

= Have you had direct experience with DS children which lead you to believe

they are detrimental to siblings? What else did you observe?

= What do you think the specific issues are?

=Is it the mental retardation that you think is a concern or the heart issue?

I know that I did not phrase these questions tactfully, but as I write this I

am getting more livid by the minute. The answer with a question does work

though. Sometimes you can get good information from someone by steering the

questions away from the abortion issue and towards the making it work better

issue.

Sorry this rambled so much.

I really have found this group helpful and hope you will too.

Beverly, mom to (9, DS)

[Guest guest]

In a message dated 04/14/2002 11:12:22 PM Eastern Daylight Time,

thebubsga@... writes:

<< I find myself at a

loss to respond to comments like this, and still feel too vulnerable to just

ignore them. Any ideas?? Thanks!! >>

Wouldn't it be nice if we could think quickly enough to turn to a woman like

that and say, " my children will be blessed by the lessons in love,

compassion, understanding they learn from the sibling God sent to join our

family. Obviously they don't need those lessons as badly as some others. I

may have to let God know what you suggested! "

Cheryl

[Guest guest]

In a message dated 4/14/2002 11:27:58 PM Central Standard Time,

cindysue@... writes:

> I can't remember where I heard this, but I was told or read that DS is the

> cadillac of disabilities.

Hi

You wont believe this but I told Sara's team that " DS is the cadillac of

disabilities " and how fortunate I was that this is Sara's label lololol The

Coordinator giggled and said she's never heard this expression before so she

wrote it down lolololol I think if I remember right I said this after they

were bragging on Sara spunk

Kathy mom to Sara 10

[Guest guest]

In a message dated 4/15/2002 3:28:10 AM Central Standard Time,

denn877@... writes:

> I know that I did not phrase these questions tactfully, but as I write this

> I

> am getting more livid by the minute. The answer with a question does work

> though. Sometimes you can get good information from someone by steering

> the

> questions away from the abortion issue and towards the making it work

> better

> issue.

>

HI Beverly

I love answering a question with a question heehee my hubby is a pro at this

technique to avoid answering.... why he didn't put the trash out on trash day

lololol

This technique also works with the schools and teens heehee

Kathy mom to Sara 10

[Guest guest]

In a message dated 4/14/2002 11:11:59 PM Eastern Daylight Time,

thebubsga@... writes:

<< For example, I was told by another mom

that I should really think about what is best for my other children in

deciding whether or not to terminate, and her opinion was clearly that it

will be too hard to give all of them what they need. I find myself at a

loss to respond to comments like this, and still feel too vulnerable to just

ignore them. Any ideas?? Thanks!! >>

This excuse really gauls me. One of my SILs was told this argument by a

co-worker when she refused testing. . How could it be best for your other

children for them to know if there was anything wrong with them you would

have terminated them. It's a much better message that you're accepting this

child " as is " just like you accepted them. Yes, it will be extra work and

that will take away time from the others, but they will also get lots of

extra love. Liam is an only child, but is well loved by his cousins, who are

very protective of him. He has added so much to our extended family.

This is a hot button for me because of all the pressure I got to terminate.

There are a number of people who are no longer in my life because they

couldn't accept my decision. Hey, whatever happened to CHOICE, anyway?

Anyway... you can gently remind them that this is the 21st century and

there's a lot more information about how well differently abled people can

contribute to our society. My favorite line is, " Hey with my genes how can

any child be less than wonderful? "

Kathy, Liam's mom(4), stepping down from my soapbox

[Guest guest]

I always say and think consider the source-LOL- I have been told some of the

wall stuff too , Like did you do drugs when you were pregnant ? And that is

what caused her to be disabled! Or watch other parents pull their children

away from her like she is contagious, One person actually told me i had no

right to bring her into this world and she had no right to be here. It really

didnt hurt me because I am a strong mom and love her dearly and love that she

is mine. And Now that she is 9 I am finding stupid comments hilarious, and

tell myself to consider the source! And I laugh and walk away. I do beleive

our kids are here to teach but some people are just worth wasting my

daughter's and my time on. And I know she has the right to be here just as

much if not more than the rest of us... . So I dont feel I need to apologize

or explain her existence here. NEttie619

[Guest guest]

<< I also like to say, " did you mean that how it sounded " ? and after saying

it, be quiet and let it hang in the air. >>

Kym: I love this!

<>

If I am in the mood to " mix it up " a bit, I will throw in this comment: " At

our local special needs adoption agency, there are families waiting in line

for children with Down syndrome. " That always gets them!

Lori

Mom to Will, 6 1/2 yrs. and , 3 1/2 yrs. (Child w/DS)

Webmaster, www.sharingds.org

Family website: http://hometown.aol.com/lorimarque/MarquetteFamily.html

[Guest guest]

That person is naive and uneducated and I'd tell her so!!! some people don't

think before they speak and it gets to be rather annoying after awhile. I am

lucky, I really haven't run into that .. the worst line I ever got though, was a

friend was pregnant, and I had just had about 6 months before.. and we were

at a baby shower and she was talking about her baby and how she hopes it's cute,

and went on and on about " looks " .. then said " well I don't want no Mongoloid

looking baby " to another friend.. my jaw just dropped. I thought her

insensitive.. I was sitting right next to her (didn't have my son with me)..

back then I was shy and said nothing.. NOW, watch out if someone ever said

that!! I've become so much stronger. This girl went on to have another

pregnancy, in which something was terribly wrong with the baby and it didn't

make it.. I wonder if she learned something.

I know I'm blabbering.. I tend to do that!! haha.. butif I have to say anything

to you.. it's that your other two will definitely learn a lot of love and

patience, and understanding.. Because they have a brother who is going to make

SURE of it!!! the bond between siblings is like none other.. I see my older two

with them and it's so precious.

Shar

----- Original Message -----

From: Walt &

I am quickly learning who I want to disclose information to and who I want

to just avoid in general! Does anyone have any good come-backs for

insensitive and ignorant comments

[Guest guest]

<<and their tomorrow's are not promised either.>>

So true, Kathy, so true!

Gail

[Guest guest]

What a great idea!!! as well as Educate Educate... we become the teachers for a

long time... it's so funny the way people think.. like it was something we did

in our pregnancy!! which is so funny to me, considering I wouldn't even take

tylenol in my pregnancy! I guess because I was 25 and not your typical " over

30 " .. people thought it was something I did..

Shar

.....................

What you could do is send an announcement to people you want to. Let them know

that your son will have DS and a heart defect. Include information that you

have high hopes for your child and he should do very well with heart surgery.

You'd appreciate their prayers and support.

[Guest guest]

There's also that line from the disability advocates-- " my [child's]

greatest handicap is your attitude. " Why anyone would want to make the

situation any more difficult than it needs to be for an expectant parent

is beyond me. Maybe that should be the kind of response--something

like, " my family is in the process of dealing with and preparing for the

birth of a child we know will be challenged and will challenge us. It's

fortunate that you were not chosen for such a challenge since you do not

feel able to meet it. But please don't project your limitedness onto us

or expect us to deal with it. If you would like to share in our

celebration of our baby, you are welcome to do so, but please do not

offer your negative opinions or try to make us feel guilty that we are

choosing to accept this challenge. "

Or maybe " if you can't say something positive and supportive, don't say

anything at all? " Or maybe just print out one of the fact sheets on ds

and hand it to such people without comment?

Judi

Re: what do you say???.....

In a message dated 04/14/2002 11:12:22 PM Eastern Daylight Time,

thebubsga@... writes:

<< I find myself at a

loss to respond to comments like this, and still feel too vulnerable to

just

ignore them. Any ideas?? Thanks!! >>

Wouldn't it be nice if we could think quickly enough to turn to a woman

like

that and say, " my children will be blessed by the lessons in love,

compassion, understanding they learn from the sibling God sent to join

our

family. Obviously they don't need those lessons as badly as some

others. I

may have to let God know what you suggested! "

Cheryl

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

messages to go to the sender of the message.

[Guest guest]

Hi ,

People like that make me so mad!!!! Ask her what she would do if one of

her children developed a serious problem in life, terminate it!!! Also ask her

what it says to your other children. If there is something wrong with me maybe

mommy won't want me either. We all come into life with our own set of problems

only some are more visible then others. Does she know what unconditional love

means?? I think not. Just my own opinion.

Loree5 Thankful for all my children with the good AND the bad things because

there souls are all the same shape, color and size God made them perfect!!

Re: what do you say???.....

In a message dated 4/14/2002 10:12:02 PM Central Standard Time,

thebubsga@... writes:

> I am quickly learning who I want to disclose information to and who I want

> to just avoid in general! Does anyone have any good come-backs for

> insensitive and ignorant comments? For example, I was told by another mom

> that I should really think about what is best for my other children in

> deciding whether or not to terminate, and her opinion was clearly that it

> will be too hard to give all of them what they need. I find myself at a

> loss to respond to comments like this, and still feel too vulnerable to just

> ignore them. Any ideas?? Thanks!!

>

>

> Mom to , 5, , 3 1/2 and new baby boy due 7/13/02

HI

I first want to welcome you, this is so neat I love waiting for babies to

be born......heehee so your little one will be loved as soon as he/she takes

his/her first breath

Now as far as the comment made to you (from above) I cant tell you what I

would have said.....not on this list heehee geeeeeeesh some folks are

clueless and their tomorrow's are not promised either.

Again, Im so happy you are here you'll have to write often to keep us

posted

Kathy mom to Sara 10.........and 3 other kids who say they've been blessed

with their little sister

[Guest guest]

In a message dated 4/14/02 10:12:10 PM Central Daylight Time,

thebubsga@... writes:

> I am quickly learning who I want to disclose information to and who I want

> to just avoid in general! Does anyone have any good come-backs for

> insensitive and ignorant comments? For example, I was told by another mom

> that I should really think about what is best for my other children in

> deciding whether or not to terminate, and her opinion was clearly that it

> will be too hard to give all of them what they need. I find myself at a

> loss to respond to comments like this, and still feel too vulnerable to

> just

> ignore them. Any ideas?? Thanks!!

>

>

> Mom to , 5, , 3 1/2 and new baby boy due 7/13/02

>

>

,

What will never cease to amaze me is the people that think they should have

any opinion in someone else's business.

I'd probably want to say something like " at least my children won't have the

burden of you as a mother " or " I hope your children don't grow up as close

minded as you " . OK, those are really nasty and I'd never say them but I'd

really like to.

Many of these people will do an about face when they meet your beautiful

baby.

Good luck,

Karyn

[Guest guest]

What I would like to know is how all these bitchy stupid people know

that your baby has DS at this point. Who has told them?

Jessie, mom of , age 37, the light of my life.

[Guest guest]

In a message dated 4/15/02 8:36:31 AM Central Daylight Time,

b4alltoday@... writes:

> Hi

>

> You wont believe this but I told Sara's team that " DS is the cadillac of

> disabilities " and how fortunate I was that this is Sara's label lololol The

>

> Coordinator giggled and said she's never heard this expression before so

> she

> wrote it down lolololol I think if I remember right I said this after they

> were bragging on Sara spunk

>

> Kathy mom to Sara 10

>

> While I adore the many children that I know with down syndrome I must

> protest this very broad generalization. I have worked with many children

> and adults with many different disabilities and have found wonderful kids

> with many different labels.

I think with every disability comes a range of abilities and disabilities.

Karyn

[Guest guest]

In a message dated 4/15/02 9:40:48 AM Central Daylight Time, Mom2lfm@...

writes:

> This excuse really gauls me. One of my SILs was told this argument by a

> co-worker when she refused testing. . How could it be best for your other

> children for them to know if there was anything wrong with them you would

> have terminated them. It's a much better message that you're accepting

> this

> child " as is " just like you accepted them. Yes, it will be extra work and

> that will take away time from the others, but they will also get lots of

> extra love. Liam is an only child, but is well loved by his cousins, who

> are

> very protective of him. He has added so much to our extended family.

>

>

I don't know about all of you but the things I have learned parenting

have made me a much better parent and just all around person. I would never

have gained all that without him and his brother is all the better for it.

Karyn