what do you say???.....

[Guest guest]

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]

I can't believe the way some people think. Our kids with ds is the same as

any other child. If you have more than one child, you would have to give the

attention to each the same way as if one child had ds or not. I know some

people just don't understand that kids with special needs are just kids. I

don't treat my son any different than my other two kids. I know one thing,

your kids will grow loving their brother and being more open and knowledgable

about people with special needs. Your other kids will look at people in this

world with a better understanding of special people than the woman who told

you to rethink your decision and to think about your other kids.My son is a

joy to have and my entire family wouldn't have him any different than what he

is now.

Davina, mom to Kyron 9;Kyrell 6 ds and Kierra 4

[Guest guest]

In a message dated 4/14/2002 9:27:46 PM US Mountain Standard Time,

cindysue@... writes:

> Does anyone have any good come-backs for

> insensitive and ignorant comments

Ok......a bit off topic her. We were at a party today for a 2 yr old. The

group was very snobby,,,,young, professional...and one couple in particular

was very nervous about Mav being near their kids. I just kept him playing

elsewhere and ignored him. My HUSBAND, took it upon himself to educate the

guy with this lengthy discussion that basically said... " Hey, he's OK...he's

just a kid!! " ... and the guy didn't now what hit him. So, after walked

away..he said to me,,,, " Why did you and decided to adopt 5 kids? " I had

never met this guy before and I DID NOT like his condecending attitude....so

I said to him,,, " Because we wanted kids. "

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.

[Guest guest]

In a message dated 4/14/02 10:12:11 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!!

>

>

>

I think I would just say that this is your child too and every bit as

deserving of your attention as the rest. How does she know about the DS

anyway? Is it her business?

Jessie, Mom to , 37 and the light of my life.

[Guest guest]

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

From: <mommyof2inaz@...>

<loree5@...>; <pderdzinski@...>;

< >

Sent: Sunday, April 14, 2002 1:08 AM

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

> 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]

Say what you want to..it's none of her business. But keep in mind that people

are going to pick up vibes from you. The more positive you are, the more they

will be. We all have to put up with ignorant comments (and you will find out

how ignorant alot of people can be!). Anyways, very few parents know ahead of

time their child's special needs. How does anyone know that their child will

not have autism, CP and a wide variety of other special needs? I can't remember

where I heard this, but I was told or read that DS is the cadillac of

disabilities. There is just so much more information available along with

strong support groups. I know a mom who had amnio because of her age. If her

child had DS, she wanted to abort. Turns out her daughter is severely disabled

with a rare disability and most likely will not live to see her teen years.

About your other kids, you will always hear about " our " special children, but I

think my other children are special in a unique way because of their brother.

Your youngest will bring out the best in them in ways I can't even describe.

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. You'd also appreciate if they

remember he is a child first and that you are hoping his birth will be just as

joyeous as your others. You may not realize this now, but by the time he is

born, you will have come a long way and will be excited about his birth. You

are doing the hard grieving now. You've already come a long way by searching

the 'net

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

[Guest guest]

Yep, I get the same remarks once in awhile. Only mine are not adopted. I had

them all. And people say " Don't you know what causes that? " And just so

many dumb things. I say the same thing-cuz I wanted kids. If my husband

would have had his way we would have had 5 more. Not me!! 5 is enough for

me.

Joyce mom to 5 Nikki 7 1/2 months DS

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

> In a message dated 4/14/2002 9:27:46 PM US Mountain Standard Time,

> cindysue@... writes:

>

>

> > Does anyone have any good come-backs for

> > insensitive and ignorant comments

> Ok......a bit off topic her. We were at a party today for a 2 yr old.

The

> group was very snobby,,,,young, professional...and one couple in

particular

> was very nervous about Mav being near their kids. I just kept him playing

> elsewhere and ignored him. My HUSBAND, took it upon himself to educate

the

> guy with this lengthy discussion that basically said... " Hey, he's

OK...he's

> just a kid!! " ... and the guy didn't now what hit him. So, after

walked

> away..he said to me,,,, " Why did you and decided to adopt 5 kids? " I

had

> never met this guy before and I DID NOT like his condecending

attitude....so

> I said to him,,, " Because we wanted kids. "

> 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.

>

>

>

>

>

[Guest guest]

I am one of the many parents that did not know before my kyrell was born that

i was going to have a baby with down syndrome. It was truely a shock to me.

I'm so glad i didn't have any test done besides the usual test you get when

you are pregnant. My Kyrell is no different than my other children and he is

not treated any different than my other kids. Not knowing saved me a lot of

unnecesarry worries and what ifs. I love my Kyrell and wouldn't have him any

different than what he is. My whole family (and friends) truely loves him and

they too, don't see him any different than my other children.

Davina,mom to Kyron 9;Kyrell 6 ds;Kierra 4

[Guest guest]

In a message dated 4/15/02 10:53:04 AM Central Daylight Time,

troyers4@... writes:

> On a lighter note back in high school we used to say to ignorant people

> " Jesus may love you but, the rest of us think you are an a-- " :

>

oh, I like that one too. Jessie

[Guest guest]

In a message dated 4/15/2002 1:27:05 PM Central Standard Time, KVanRyzin

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

>>

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

>

> Karyn

Hi Karyn

I'm speaking from my own experiences, my own limits and lots of partiality

........and sure we all know that kids come with all sorts of needs and

abilities, not saying that.......I just feel DS is the cadillac of all

disabilities...........I feel very " rich " for having Sara and her label, over

all others.

Kathy mom to Sara 10

[Guest guest]

In a message dated 4/15/02 12:41:08 PM Central Daylight Time,

leslie-kerrigan@... writes:

> Of course we told family and close friends about the DS soon after she was

> born, but I refrained from telling those who didn't need to know until they

> had a chance to meet . I felt that a call to someone who hadn't

> seen our sweet, wonderful baby might cause them to have preconcieved

> notions

> about her, how we " must be feeling " , whatever. I could just picture the

> lunchroom at work before I was back from maternity leave " Oh, did you

> hear..... " " it's so sad.... " , " poor ..... " " did she have that

> testing..... " . It wasn't that I had any problem telling people, I just

> wanted them to see , see that she was just like any other baby,

> and

> that we loved her and related to her like our other child. This worked

> really well for us, and when those more casual friends and co-workers were

> told, they were really pretty relaxed about it because they knew

> as a baby first, not as her disability first.... they had been allowed to

> get comfortable with her!

>

I agree with this 100%. I also couldn't stand the thought of people

coming to see out of curiosity, and pitying me. So we just didn't

tell people. By the time they figured it out they already knew and loved him

and it didn't matter. There was one friend we were sorry we told, as she

always did see him as a disability. He didn't have any health problems and

that helped too. We just treated him as we would have otherwise, always

have. He's always been introduced as our/my son and if people know fine,

and if they don't that's all right too. I can honestly say I have never been

asked any stupid questions. Since he has used a wheelchair I have had a

couple people ask me what's wrong with him and I just say, " He can't walk. "

This all keeps reminding me of the time I took our pet rabbit to the

vet, and this man looked in the carrier and said, " It's too bad rabbits are

so stupid! " Boy, did I tell him! The girl at the counter got down behind it

she was laughing so hard. I told him the rabbit was probably smarter than he

was. He was lucky he didn't say that to my husband, he probably would have

found himself laid out on the floor. My husband REALLY loved rabbits. And

they are NOT stupid.

Jessie, Mom to , 37 and the light of my life.

[Guest guest]

Dreams

Once there was a child

Growing in a womb.

Everyone loved this baby,

and decorated the room.

Anticipation shimmered,

in this atmosphere of love,

gifts were graciously given

For this little gift from above.

And then the happy moment,

when this family member was born.

The parents wept in anguish,

The Grandparents stared, forlorn.

What happened to our perfect child,

the one we all cared for?

Who is this injured stranger

sleeping in the nursery floor?

How do you expect us to love him

He's not a normal child?

I don't know how to raise him,

in this life that we have styled.

Yet they took this broken baby,

to their home and in their hearts ...

and raised this special person

and taught him with an art.

He didn't fit their dreams,

so they changed their dreams for him.

And learned that they could do it..

And with him they would win.

They raised a happy child,

and shared him for all to see.

This child is not perfect,

but he's as good as you and me!

[Guest guest]

You are so right Karyn, Tonight we got on the subject of abortion and my 6 year

old was asking about it, so we explained in broad terms that some people don't

want to have their babies if they think that there is something wrong with it.

His eyes filled with tears and he said " Every baby is special in some way. " Out

of the mouths of babes comes the wisdom of the ages. I'm proud this little

" crack " baby came home almost 7 years ago to live with us!!!! He is special in

soooo many ways!!!

Loree5

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

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]

My favorite line is, " Hey with my genes how can

any child be less than wonderful? "

That is great Kathy! When people stared at , I use to say something like

" He's cute, isn't he? Thank God he looks like me and not his father. " I'm not

sure if Tim would appreciate that comment...lol...but it got people to smile.

Many times it's other family members of a person with DS who do the staring. A

few months ago, I had a man at the grocery store staring...turns out he has a

younger child with DS.

[Guest guest]

In a message dated 04/15/2002 5:19:25 PM Eastern Daylight Time,

GWDBNOBT@... writes:

<< I always just say, " She acts just like her Dad. " >>

You know, this thread has me laughing every day! ;-)

Cheryl in VA

[Guest guest]

OK Timr to pull out the kleenex. How much the world could learn if they

would look trhrough the eyes of a child.

Hope

loree wrote:

> You are so right Karyn, Tonight we got on the subject of abortion and

> my 6 year old was asking about it, so we explained in broad terms that

> some people don't want to have their babies if they think that there

> is something wrong with it. His eyes filled with tears and he said

> " Every baby is special in some way. " Out of the mouths of babes comes

> the wisdom of the ages. I'm proud this little " crack " baby came home

> almost 7 years ago to live with us!!!! He is special in soooo many

> ways!!!

>

> Loree5

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

>

>

> 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 4/16/2002 2:21:48 PM Central Standard Time,

roncfam@... writes:

> but sometimes there are those that I feel

> romanticize what it is like to have a child with DS or a disability.

Oooooh yes they have to be the same folks who say " ooooh ds kids are

so sweet and lovable " heehee if they only knew

Kathy mom to Sara 10.........we have lovable moments and then we have... well

you all know

[Guest guest]

Boy this thread ran though my mind last night. I ran into a woman who teaches

sped at a local school. She asked me tons of questions about Sara......How

did I like her school, her placement, where she was developmentally,

academically etc..... I felt like I had to answer because of where I was and

she knows my Mom......a southern respect thing hit me lol anyway I was

cheerful and light hearted until she made some comments that floored me. One

was that she has a real problem with " our " kids getting all of these

academics and they don't know how to make a peanut butter sandwich (and how

in detail that this should change)..........I closed my mouth, I knew it had

to be wide open and I uttered " Sara knows how to make sandwiches " lolololol

my Mom made a tiny giggle and she finished this lady up...........I was so

proud of her, she told this lady, all of Sara's tales, even getting picked up

by the police and telling them where she lived. For a moment I was a

respectful daughter and my Mom became a powerful advocate......feeling the

need to defend her granddaughters place in life When I walked my Mom to

her car, she looked at me and said " some people talk to much, you just met

one " heehee

Kathy mom to Sara 10..........sometimes it is better to be silent and still

and let others carry you

[Guest guest]

In a message dated 4/16/02 3:56:23 PM Central Daylight Time,

b4alltoday@... writes:

> . One

> was that she has a real problem with " our " kids getting all of these

> academics and they don't know how to make a peanut butter sandwich

hey

can make sandwiches....they may not be the prettiest looking things but

what the heck. hehe :-) glad to hear your mom put her in her place. lol

Joy

[Guest guest]

How beautiful that poem is. Thank you for sharing it!!

Loree5

what do you say???.....

Dreams

Once there was a child

Growing in a womb.

Everyone loved this baby,

and decorated the room.

Anticipation shimmered,

in this atmosphere of love,

gifts were graciously given

For this little gift from above.

And then the happy moment,

when this family member was born.

The parents wept in anguish,

The Grandparents stared, forlorn.

What happened to our perfect child,

the one we all cared for?

Who is this injured stranger

sleeping in the nursery floor?

How do you expect us to love him

He's not a normal child?

I don't know how to raise him,

in this life that we have styled.

Yet they took this broken baby,

to their home and in their hearts ...

and raised this special person

and taught him with an art.

He didn't fit their dreams,

so they changed their dreams for him.

And learned that they could do it..

And with him they would win.

They raised a happy child,

and shared him for all to see.

This child is not perfect,

but he's as good as you and me!

[Guest guest]

>I look at my daughter as the miracle of my

> life. I am lucky, yes it is hard and sometimes I still cry after 9 years,

I am so glad that you wrote the above. too is one of the lights of

my life (the other of course is my daughter) and I can't imagine my life

without him. But there are days when it IS hard and I still cry

occasionally too. I am trying to write this carefully because I really

don't want to offend anyone...but sometimes there are those that I feel

romanticize what it is like to have a child with DS or a disability. I know

it is really helpful for me to read that there are others who still struggle

from time to time as well.

R.

Mom to (8, ds) and Grace (5)

[Guest guest]

i certainly dont fall into the category of sugar coating parents. LOL

kerrie

[Guest guest]

,

Even at Zach's age, I still cry on occasion. As sweet as our kids are,

there are many trying times with them or about them. Zach's sister, ,

will be 16 next month. She's talking about getting her license. Zach piped

up, " What about me? " It broke my heart. I cheer him on for the milestones

that he does reach but I still mourn the ones that he won't. It think we all

do sometimes.

Today, I am happy. Zach gave me a big hug and said, " I like you, Mom! " What

a cutie! (The other two are big huggers too <vbg>)

Mom to Zachary (17/DS), (15) and (12)

Boonville, IN

[Guest guest]

<< I am trying to write this carefully because I really

don't want to offend anyone...but sometimes there are those that I feel

romanticize what it is like to have a child with DS or a disability. I know

it is really helpful for me to read that there are others who still struggle

from time to time as well.

R.

Mom to (8, ds) and Grace (5)>>

I would hope that I would not falsely sugar coat life with Ted. It is

definately getting easier. He is a loving and helpful, child most of the

time. There was a time I had to go on welfare because I watch other peoples

children and Ted was unpredictable. Just a month ago he poured all the

bleach and all the detergent into the washer. He did this once before a few

years earlier. I pay when I get lazy and don't put it waaay up high. I

still put anything I think he may use inappropriately way up high. He

doesn't just take off anymore but that was a huge problem before. At age 9

& 6 my other 2 sons flew across the country to LA and changed planes in

Chicago! With Ted, I look to see what he is doing nearly every 10 minutes.

I will continue to make the best of each day. He brings me such joy.

Gail, mom to Ted (10) doing the salsa with a big black plastic serving spoon

and a black plastic spatula (is that the pancake turner?) in each hand

hitting them together for the clap!

[Guest guest]

i live in MD. I saw your post about Kennedy Krieger. Do you live in Md

also? I hope all goes well with . Good luck on his progress. Things

could only get better.

Davina, mom to Kyron 9;Kyrell 6 ds;Kierra