RE: Stupid things people say to be nice.

[Guest guest]

I have two things:

 

I had a friend tell me she would commit suicide is she had my life. (I think she

was trying to tell me that I handle things very well but in a backward way)

 

One day I was with my MIL when Amy was about 3 months.  I said to Amy " Let's go

watch your cousin's soccer game.  Maybe you'll play soccer one day "   My MIL

replied " Oh Ali she'll never be able to do that plus they don't have retarded

leagues in our area " .  I had to leave right away before I hit her!!!  Don't

think there was any niceness in that statement but had to share.

Some of my favorites:

You people are just angels!

I don't know how you do it!

Why not send him XXXXXXXXX so you can have a life?

I bet you could give him to the state - after all, no one can live with

THAT!!

If he were my kid, he wouldn't act like that.

Don't you know hoe to discipline that brat?

A good swift smack and he would stop XXXX.

I know JUST how you feel - after all my son skipped school last week and I

thought I would die.

[Guest guest]

Some of my favorites:

You people are just angels!

I don't know how you do it!

Why not send him XXXXXXXXX so you can have a life?

I bet you could give him to the state - after all, no one can live with

THAT!!

If he were my kid, he wouldn't act like that.

Don't you know hoe to discipline that brat?

A good swift smack and he would stop XXXX.

I know JUST how you feel - after all my son skipped school last week and I

thought I would die.

[Guest guest]

And Annie has given me permission to stay in my pajamas all day, and TODAY

that's just what I'm doing!!! (My teenager gets back from Europe tomorrow!)

Not feeling too fueled today though...I'm taking a break from the whole advocacy

thing this Summer...Aubrey starts middle school in Sept...ugh...

Desi

>

> Subject: RE: Stupid things people say to be nice.

> To:

> Date: Wednesday, June 30, 2010, 10:11 AM

>

> Yes I second that ...Desi has " fueled me " from her

> " fueling " experiences!!  annie

>

>

>

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[Guest guest]

Ditto, Sara, have a wonderful time!!!

I would also feel guilty, but I think once I was physically away from the house

and enjoying this precious time with my sister, I would savor every moment.

Let us know how it goes.

Best,

To:

From: macookson@...

Date: Wed, 30 Jun 2010 10:55:53 -0700

Subject: Re: Stupid things people say to be nice.

Leave the guilt at home!!!! You need this.

Sent from my iPhone

Well - so let me let the guilt in. This w/e Elie is coming home for his

monthly visit. I , however, will not be here for the very first time. HE

will be alone with Dad. Not a bad thing but still I feel guilty - and

already missing my boy. BUT _ I have an opportunity to go on a sisters w/e

with my only sister for the very first time since we were girls going to

girl scout camp together. I am leaving tomorrow and will return on Monday.

Elie comes home on Fri and will leave on Sunday.

I am going - no matter the little pity party- . We are going to a rented

house a friend has high up in the mountains near Asheville, NC (higher than

I am). So looking forward to this.

>

>

> Yep.

>

> The one about God not giving people more than they can handle is also a way

> for the person saying it to not feel the need to offer help, compassion.

> Because clearly, we can handle this. Sometimes, on a really bad day, I'll

> come back with " I handle it because there's no one else and I have to! " .

> Ugh.

>

> It's not that I don't love my " special " kids -- I totally do, with all my

> heart (you all get that, I'm sure). But the sheer amount of work is daunting

> sometimes!! I have to fight for what " me " time I get. Having special kids

> has affected my life in so many ways...my spirituality, my emotional

> maturity, my physical self (I'm fighting for that one!), my social life

> (sigh). But I am simply not " more capable " of handling this than anyone

> else...

>

> Ugh.

>

> My pet peeve.

>

> My least least least favorite-- " oh, you're so lucky...you have a baby who

> will never grow up and leave you! " .

>

> Right after was born, the geneticist's assistant was telling me

> about a work program she worked in during college. She said " the people in

> the group were just so cute! " . Cute. She was talking about adults. Groan.

>

>

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 12:32 PM, " gldcst "

<gldcst@...<gldcst%40comcast.net>>

> wrote:

>

> My alltime favorite is " God only gives these kids to special people "

> because I know they are thinking (And I'm sooooo glad you're the one who's

> special and not me)

> Sherry

>

>

>

[Guest guest]

Oh, Ali, that's not nice at all!!!

Sent from my iPhone

On Jun 30, 2010, at 5:34 PM, Van Straaten

wrote:

I have two things:

I had a friend tell me she would commit suicide is she had my life. (I think she

was trying to tell me that I handle things very well but in a backward way)

One day I was with my MIL when Amy was about 3 months. I said to Amy " Let's go

watch your cousin's soccer game. Maybe you'll play soccer one day " My MIL

replied " Oh Ali she'll never be able to do that plus they don't have retarded

leagues in our area " . I had to leave right away before I hit her!!! Don't

think there was any niceness in that statement but had to share.

Some of my favorites:

You people are just angels!

I don't know how you do it!

Why not send him XXXXXXXXX so you can have a life?

I bet you could give him to the state - after all, no one can live with

THAT!!

If he were my kid, he wouldn't act like that.

Don't you know hoe to discipline that brat?

A good swift smack and he would stop XXXX.

I know JUST how you feel - after all my son skipped school last week and I

thought I would die.

[Guest guest]

i second all of those!!!

What a great smile works, too!

Sent from my iPhone

" what a great kid! "

" what a happy family "

" I bet he keeps you on your toes "

" I bet you are learning some life lessons "

" Can I keep him for a few hours while you rest? "

" can I pick something up from the grocery store for you? "

" Can I babysit while you and your husband go to a movie? "

........

Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

My worst one was our first neurologist. She said

" I don't understand didn't you know the baby had down syndrome? "

And my old pediatrician

" Treat him like your other kids bring him out in the backyard. Is it OK if I

write down syndrome in his chart? "

Re: Stupid things people say to be nice.

I've kinda gotten to the point where most things people say go in one ear and

out the rest

after hearing things like this...

" My aunt has one like that. She just keeps it at home... "

and especially this one-

" I could never be the kind of mother to bring a child like this

into the world to suffer... "

Thus, I bring Aubrey into the world even more aggressively and work even

harder to break barriers...

These people just fueled me.

Desi

ps and just in case anyone's wondering, my daughter's not suffering! She's been

taught

to express her discontent with assertiveness and dignity, and this mother

removes anyone from her life that does not treat her with the respect she

deserves, even if it's " family... "

[Guest guest]

Before even having an autism dx, just ds, my husbands ex wife told their

kids " how selfish of them to have a child when they were that old (39 &

42), they knew the thing would have down syndrome and

Now its just going to be a burden to you kids

Hence her nickname - puss gut

Kel

And like many of you, if one more person tells me that God doesn't give you

more than you can handle..... hate that line, has ds, autism,

epilepsy, sensory disorder, profoundly delayed, (not even sitting up at 2.5

years old , and the kicker, my dx of Multiple Sclerosis one year ago. This

is MORE than I can handle!

Kel

_____

From: [mailto: ] On Behalf

Of Wetter Grundulis

Sent: Wednesday, June 30, 2010 2:55 PM

To:

Subject: Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

On 30 Jun 2010, at 06:13 p.m., Cookson <macookson@...

<mailto:macookson%40yahoo.com> > wrote:

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen <pastmidvale@...

<mailto:pastmidvale%40gmail.com> >

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

Kelley - but you are dealinga. You write us, you make things work as best

you can and you deal. And ex wife person - may she live to get a hole in

her last tooth and a hole in her guts!!!

>

>

> Before even having an autism dx, just ds, my husbands ex wife told their

> kids " how selfish of them to have a child when they were that old (39 &

> 42), they knew the thing would have down syndrome and

>

> Now its just going to be a burden to you kids

>

> Hence her nickname - puss gut

>

> Kel

>

> And like many of you, if one more person tells me that God doesn't give you

> more than you can handle..... hate that line, has ds, autism,

> epilepsy, sensory disorder, profoundly delayed, (not even sitting up at 2.5

> years old , and the kicker, my dx of Multiple Sclerosis one year ago. This

> is MORE than I can handle!

>

> Kel

>

> _____

>

> From: [mailto:

> ] On Behalf

> Of Wetter Grundulis

> Sent: Wednesday, June 30, 2010 2:55 PM

>

> To:

> Subject: Re: Stupid things people say to be nice.

>

> Ok, this is very interesting to me, as a person who tries to avoid

> saying stupid things. So what would you PREFER for people to say?

>

> Xxx,

> Jen

>

> On 30 Jun 2010, at 06:13 p.m., Cookson

<macookson@...<macookson%40yahoo.com>

> <mailto:macookson%40yahoo.com <macookson%2540yahoo.com>> > wrote:

>

> > " give him 2 weeks with me and he'll stop acting like that! "

> >

> > " I would never put up with that crap from one of mine! "

> >

> > " you have so much patience! I could never do what you do! "

> >

> > " God never gives you more than you can handle. "

> >

> > " How do you do it? "

> >

> > Sigh.

> >

> > Sent from my iPhone

> >

> > On Jun 30, 2010, at 10:17 AM, Sara Cohen

<pastmidvale@...<pastmidvale%40gmail.com>

> <mailto:pastmidvale%40gmail.com <pastmidvale%2540gmail.com>> >

> > wrote:

> >

> > Some of my favorites:

> >

> > You people are just angels!

> >

> > I don't know how you do it!

> >

> > Why not send him XXXXXXXXX so you can have a life?

> >

> > I bet you could give him to the state - after all, no one can live

> > with

> > THAT!!

> >

> > If he were my kid, he wouldn't act like that.

> >

> > Don't you know hoe to discipline that brat?

> >

> > A good swift smack and he would stop XXXX.

> >

> > I know JUST how you feel - after all my son skipped school last week

> > and I

> > thought I would die.

>

> >

> >

[Guest guest]

Oh Sara, you gave me a much needed laugh! Thank you - I read it to

and I think he will fall asleep with a smile just thinking of your reply

Yes I deal with it, and I hope to be able to bitch, moan, laugh, cry and

enjoy my childrens smiles for a long long time

I am more scared, and though I try to remember not to borrow worry from the

future, I am scared for my kids

Thanks for the support I get from each of you , the stories, laughs and

understanding,

_____

From: [mailto: ] On Behalf

Of Sara Cohen

Sent: Wednesday, June 30, 2010 10:53 PM

To:

Subject: Re: Stupid things people say to be nice.

Kelley - but you are dealinga. You write us, you make things work as best

you can and you deal. And ex wife person - may she live to get a hole in

her last tooth and a hole in her guts!!!

On Wed, Jun 30, 2010 at 11:45 PM, kellysemail <kellysemail@...

<mailto:kellysemail%40wi.rr.com> > wrote:

>

>

> Before even having an autism dx, just ds, my husbands ex wife told their

> kids " how selfish of them to have a child when they were that old (39 &

> 42), they knew the thing would have down syndrome and

>

> Now its just going to be a burden to you kids

>

> Hence her nickname - puss gut

>

> Kel

>

> And like many of you, if one more person tells me that God doesn't give

you

> more than you can handle..... hate that line, has ds, autism,

> epilepsy, sensory disorder, profoundly delayed, (not even sitting up at

2.5

> years old , and the kicker, my dx of Multiple Sclerosis one year ago. This

> is MORE than I can handle!

>

> Kel

>

> _____

>

> From: <mailto:%40yahoogroups.com>

[mailto:

> <mailto:%40yahoogroups.com>

] On Behalf

> Of Wetter Grundulis

> Sent: Wednesday, June 30, 2010 2:55 PM

>

> To: <mailto:%40yahoogroups.com>

> Subject: Re: Stupid things people say to be nice.

>

> Ok, this is very interesting to me, as a person who tries to avoid

> saying stupid things. So what would you PREFER for people to say?

>

> Xxx,

> Jen

>

> On 30 Jun 2010, at 06:13 p.m., Cookson <macookson@...

<mailto:macookson%40yahoo.com> <macookson%40yahoo.com>

> <mailto:macookson%40yahoo.com <macookson%2540yahoo.com>> > wrote:

>

> > " give him 2 weeks with me and he'll stop acting like that! "

> >

> > " I would never put up with that crap from one of mine! "

> >

> > " you have so much patience! I could never do what you do! "

> >

> > " God never gives you more than you can handle. "

> >

> > " How do you do it? "

> >

> > Sigh.

> >

> > Sent from my iPhone

> >

> > On Jun 30, 2010, at 10:17 AM, Sara Cohen <pastmidvale@...

<mailto:pastmidvale%40gmail.com> <pastmidvale%40gmail.com>

> <mailto:pastmidvale%40gmail.com <pastmidvale%2540gmail.com>> >

> > wrote:

> >

> > Some of my favorites:

> >

> > You people are just angels!

> >

> > I don't know how you do it!

> >

> > Why not send him XXXXXXXXX so you can have a life?

> >

> > I bet you could give him to the state - after all, no one can live

> > with

> > THAT!!

> >

> > If he were my kid, he wouldn't act like that.

> >

> > Don't you know hoe to discipline that brat?

> >

> > A good swift smack and he would stop XXXX.

> >

> > I know JUST how you feel - after all my son skipped school last week

> > and I

> > thought I would die.

>

> >

> >

[Guest guest]

My sister in law called me and said maybe this will show Chrissy (another sil

that was trying to get pregnant at the time) that 40 is just too old to have a

baby.

Terry

Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

On 30 Jun 2010, at 06:13 p.m., Cookson <macookson@...

<mailto:macookson%40yahoo.com>; > wrote:

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen <pastmidvale@...

<mailto:pastmidvale%40gmail.com>; >

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

<<<hugs>>>.

I'm at the end of my rope sometimes, too. I have 3 kids on the spectrum, my one

with DS is the most severe but his big brothers struggle, too. Lil' sis is

doing fine but seems to have some areas where she has trouble. DH has

Asperger's too (no official dx but it's pretty obvious) and ADHD. With

everything on my plate, I am making time for fitness but have no social life. I

have girlfriends but no one gets my kids...and we don't go out. DH and I don't

really have couple/family friends. He tends to irritate people. He is

incredibly critical and often glued to some game on his phone, leaving pretty

much everything to me. He's supportive in that he helps out when I ask for it

if he can. But emotionally, he's just not able to be supportive and thank God

for my girlfriends because they're who I go to. I try with DH but he is so

uncomfortable with it and clearly uninterested in leaving the comfortable and

predictable world of facts. My mom is having

trouble with her DH (my stepdad, prone to depression and resentful that they

didn't move to Mn last year) and thinks they will divorce; and my dad is scaring

me because he is refusing to have a Dr check his tremor, even though his brother

had Parkinson's. Me, I seem to be getting trigeminal neuralgia. My neurologist

says it's not related to the huge cyst in my sinus on that side (under that

cheekbone) but my chiropractor and his neurosurgeon friend think that the cyst

is to blame. What to believe?

Lots of pressure. Lots to cope with. 's poop issues are really not the

worst thing in my life (though his escapes from the backyard, over the 6' fence,

are definitely up there near the top.). I'm at the point where I can no longer

process things--it's all " just one more thing " . I've stopped beating myself up

for not being a perfect mom and started just aiming for doing my best. Working

out is big and I'm happy I do that. I try to soak in the tub a few times a

week, too. Next I'll be adding yoga and then I'm going to figure out what I want

to do with the rest of my life. :0

I'm digging my way back to myself. It's hard. But I think I'll get there. .

Thanks for listening!

Sent from my iPhone

Before even having an autism dx, just ds, my husbands ex wife told their

kids " how selfish of them to have a child when they were that old (39 &

42), they knew the thing would have down syndrome and

Now its just going to be a burden to you kids

Hence her nickname - puss gut

Kel

And like many of you, if one more person tells me that God doesn't give you

more than you can handle..... hate that line, has ds, autism,

epilepsy, sensory disorder, profoundly delayed, (not even sitting up at 2.5

years old , and the kicker, my dx of Multiple Sclerosis one year ago. This

is MORE than I can handle!

Kel

_____

From: [mailto: ] On Behalf

Of Wetter Grundulis

Sent: Wednesday, June 30, 2010 2:55 PM

To:

Subject: Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

On 30 Jun 2010, at 06:13 p.m., Cookson <macookson@...

<mailto:macookson%40yahoo.com> > wrote:

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen <pastmidvale@...

<mailto:pastmidvale%40gmail.com> >

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

OMG I hate that saying. I like your take on it Sherry. It is not that I do not

believe that I could be special to God but, I do not believe that God would

intentionally even make a special needs child. I believe we are all the same in

Gods eyes and when a special needs child is born it is because of something that

this we are on this earth are doing to our bodies, our food,etc. Just like

global warming. We are all special in Gods eyes. Cyndi B

>

> My alltime favorite is " God only gives these kids to special people " because I

know they are thinking (And I'm sooooo glad you're the one who's special and not

me)

> Sherry

>

>

[Guest guest]

I would actually prefer they didn’t really say anything pertaining to nathan's

disabilities, just talk to him like they do everyone else, jeeesh often even

doctors just talk to me, only look at nathan for the needed assessment but ask

me all the questions, nathan can say yes or no, and often he wont talk to

others, but they should at least try, not just assume. shawna

http://sewshawna.blogspot.com

From: Wetter Grundulis

Sent: Wednesday, June 30, 2010 2:55 PM

To:

Subject: Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

I am with you cindi and sherry, I too believe God did not intentionally cause

disabilities, it just happens, Its not a punishment or a reward, its just what

it is. shawna

http://sewshawna.blogspot.com

From: cynthiamiltonburns

Sent: Thursday, July 01, 2010 12:36 AM

To:

Subject: Re: Stupid things people say to be nice.

OMG I hate that saying. I like your take on it Sherry. It is not that I do not

believe that I could be special to God but, I do not believe that God would

intentionally even make a special needs child. I believe we are all the same in

Gods eyes and when a special needs child is born it is because of something that

this we are on this earth are doing to our bodies, our food,etc. Just like

global warming. We are all special in Gods eyes. Cyndi B

>

> My alltime favorite is " God only gives these kids to special people " because I

know they are thinking (And I'm sooooo glad you're the one who's special and not

me)

> Sherry

>

>

[Guest guest]

After 11 years now of people making ignorant comments about Lydia and my life

with her I have just come to a place where I feel sorry for people who have

never had a chance to have someone in their lives that changes everything up. My

favorite things to tell people (and they are the truth), that I would take 2

more " Lydia's " before I had to raise another " TYPICAL " teenage girl again. My

oldest (22 now) really gave me such a hard time as a teenager it nearly ruined

me emotionally. Then I have a typical 10 year old boy and I love all my kids but

he makes me feel like " there really is something wonderful about having a

" NON-verbal " child. All kids are draining but My relationship with Lydia has

brought me more contentment in my life than anyone will ever know. She is like

my companion and our relationship is so simple and comforting to me. People only

see the poop issues and behaviors, they can't really see how this balances

itself out, like everyting in life. 

Pity does feel like a put-down, but if my family wants to regard me as some

kind

of " hero " - I'll let them, even after 11 years they are as clueless as you can

be about what to say to me or how to help, so they just don't.  

________________________________

To:

Sent: Thu, July 1, 2010 12:46:11 AM

Subject: Re: Stupid things people say to be nice.

 

I would actually prefer they didn’t really say anything pertaining to nathan's

disabilities, just talk to him like they do everyone else, jeeesh often even

doctors just talk to me, only look at nathan for the needed assessment but ask

me all the questions, nathan can say yes or no, and often he wont talk to

others, but they should at least try, not just assume. shawna

http://sewshawna.blogspot.com

From: Wetter Grundulis

Sent: Wednesday, June 30, 2010 2:55 PM

To:

Subject: Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

Hi Terry,

I had to laugh when I read your SIL's comment.....how obnoxious and assuming

that just older mothers could potentially have babies with special issues....

although the odds are higher for issues with older parents, we all know that

things can happen during any pregnancy, during the birth and afterwards,

regardless of the parents ages.

I was 42 years old when I had . I would have liked to have had a family

much younger, but that wasn't in the cards for me. I hadn't met my husband until

I was 41. I think there are folks out there who are similar situations who have

not met the right person or have been unable to get pregnant, despite years of

trying. It's painful when others are critical when they were so blessed to have

had healthy/typical children at younger ages- they really have no clue.

Life is uncertain for all of us and unfortunately no one is immune from

adversity at some point in life. A woman that I knew from a local moms club when

was much younger, used to stare at with disdain and I heard her say

once to another Mom that she couldn't believe that I didn't terminate the

pregnancy! Ouch!!! When she realized I heard what she said,( I joined the group

at the tale end of the conversation and was sitting behind her) she was

flustered and I said to her that thank goodness she wasn't 's mother and

left. Ironically, her son sustained a severe high school football injury the

following year and was paralyzed as a result.

All of us on the list-serv definitely have our share of challenges that most

typical familes could never fully understand unless they walked in our shoes. I

definitely struggle when people have made insensitive/cruel remarks and it's

only by the grace of God that I've been able to let these things go. Thank

goodness the majority of family and friends are loving and supportive.

It is a blessing to have this list-serv and to be able to share from the heart

all the joys and trials of raising our precious kids. This is not the road we

would have chosen, ( and I wish it wasn't so hard sometimes), but I couldn't

imagine my life without , adorable, big blue-eyed boy who melted my heart

from the moment I held him after his arrival into the world.

Here's a big cyber space hug to all of us because we are heroes, especially in

the eyes of our kids.

Best,

Mom to , 6.5 yrs. old

DS/PDD-NOS

Colon Cancer Survivor, 3/19/10

To:

From: terese11@...

Date: Thu, 1 Jul 2010 00:16:41 -0400

Subject: Re: Stupid things people say to be nice.

My sister in law called me and said maybe this will show Chrissy (another sil

that was trying to get pregnant at the time) that 40 is just too old to have a

baby.

Terry

Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

On 30 Jun 2010, at 06:13 p.m., Cookson <macookson@...

<mailto:macookson%40yahoo.com>; > wrote:

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen <pastmidvale@...

<mailto:pastmidvale%40gmail.com>; >

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

As much as I'd like to be, I'm not very up on Bible scripture... but I

don't think it says anywhere in the Bible that God gives " special people

special kids " or " God doesn't give us more than we can handle " specifically.

People say things in their own way w/out thinking about what they are saying

(however stupid it comes out sometimes). A lot of things in the Bible are

taken out of context. I think the first is more or less God has a plan for

everyone - including our special children and ourselves - whether or not

we understand or like what His plan is. And the second refers to being able

to handle things through God and His strength and grace not on our own,

but leaning upon him.

Heidi

[Guest guest]

The verse that is used to " prove " that " God doesn't give you more than you can

bear " is I Corinthians 10:13-- " God is faithful, he will not let you be tempted

beyond what you can bear. "   But if I understand the context correctly, it's

specifically talking about sin; not necessarily life circumstances.  I could be

wrong here, though.

I really resent the platitudes and cliches that are often used, some of them by

Christians.  The week got his autism diagnosis, I was told that he

could be a blessing.  That IS true, and he IS a blessing . . . but that was not

something I was able to hear at that point. 

If I were talking to someone who'd just gotten an autism or DS diagnosis, I

would probably say something like, " I'm so sorry this happened. "   I might even

tell them, " Yes, this is a bad thing, and there are days when it's going to get

worse. "   I would also tell them, " Believe it or not, this is not the end of the

world.  You probably don't believe me right now, and you are probably not going

to believe me for a very long time.  In one sense, it IS the 'end of the

world'--i.e. the end of the hopes and dreams you had for that child.  Now you

have to deal with a different world, and it's one that's not going to be easy. 

But it is not necessarily doomsday. "

Speaking as an autism mom, I semi-resent the poem " Welcome to Holland " . 

Dealing with autism is more like " Welcome to Iraq " .  Autism is not a gentle

place with tulips and windmills.  It's meltdowns and tantrums and communication

frustrations, it's self-stimulation and repetitive behaviors, it's arguments

over what's the cause and what's the treatment (and some of those arguments can

be vicious!)  It is like fighting a war.

Tina

" The world has no money, and right now, the emperor has no clothes. " -- Neil

Cavuto, from the May 6, 2010 broadcast of Fox News.

Nuclear option in 2010, Betsy Ray/Tacy in 2012!

Re: Stupid things people say to be nice.

 

As much as I'd like to be, I'm not very up on Bible scripture... but I

don't think it says anywhere in the Bible that God gives " special people

special kids " or " God doesn't give us more than we can handle " specifically.

People say things in their own way w/out thinking about what they are saying

(however stupid it comes out sometimes). A lot of things in the Bible are

taken out of context. I think the first is more or less God has a plan for

everyone - including our special children and ourselves - whether or not

we understand or like what His plan is. And the second refers to being able

to handle things through God and His strength and grace not on our own,

but leaning upon him.

Heidi

[Guest guest]

,

I cried when I read what you wrote.......you been spying on me???? You could

write my story. Hang in there and I give you a pat on the back for

exercising..... wonderful!

To:

From: macookson@...

Date: Wed, 30 Jun 2010 21:26:39 -0700

Subject: Re: Stupid things people say to be nice.

<<<hugs>>>.

I'm at the end of my rope sometimes, too. I have 3 kids on the spectrum, my one

with DS is the most severe but his big brothers struggle, too. Lil' sis is doing

fine but seems to have some areas where she has trouble. DH has Asperger's too

(no official dx but it's pretty obvious) and ADHD. With everything on my plate,

I am making time for fitness but have no social life. I have girlfriends but no

one gets my kids...and we don't go out. DH and I don't really have couple/family

friends. He tends to irritate people. He is incredibly critical and often glued

to some game on his phone, leaving pretty much everything to me. He's supportive

in that he helps out when I ask for it if he can. But emotionally, he's just not

able to be supportive and thank God for my girlfriends because they're who I go

to. I try with DH but he is so uncomfortable with it and clearly uninterested in

leaving the comfortable and predictable world of facts. My mom is having

trouble with her DH (my stepdad, prone to depression and resentful that they

didn't move to Mn last year) and thinks they will divorce; and my dad is scaring

me because he is refusing to have a Dr check his tremor, even though his brother

had Parkinson's. Me, I seem to be getting trigeminal neuralgia. My neurologist

says it's not related to the huge cyst in my sinus on that side (under that

cheekbone) but my chiropractor and his neurosurgeon friend think that the cyst

is to blame. What to believe?

Lots of pressure. Lots to cope with. 's poop issues are really not the

worst thing in my life (though his escapes from the backyard, over the 6' fence,

are definitely up there near the top.). I'm at the point where I can no longer

process things--it's all " just one more thing " . I've stopped beating myself up

for not being a perfect mom and started just aiming for doing my best. Working

out is big and I'm happy I do that. I try to soak in the tub a few times a week,

too. Next I'll be adding yoga and then I'm going to figure out what I want to do

with the rest of my life. :0

I'm digging my way back to myself. It's hard. But I think I'll get there. .

Thanks for listening!

Sent from my iPhone

Before even having an autism dx, just ds, my husbands ex wife told their

kids " how selfish of them to have a child when they were that old (39 &

42), they knew the thing would have down syndrome and

Now its just going to be a burden to you kids

Hence her nickname - puss gut

Kel

And like many of you, if one more person tells me that God doesn't give you

more than you can handle..... hate that line, has ds, autism,

epilepsy, sensory disorder, profoundly delayed, (not even sitting up at 2.5

years old , and the kicker, my dx of Multiple Sclerosis one year ago. This

is MORE than I can handle!

Kel

_____

From: [mailto: ] On Behalf

Of Wetter Grundulis

Sent: Wednesday, June 30, 2010 2:55 PM

To:

Subject: Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

On 30 Jun 2010, at 06:13 p.m., Cookson <macookson@...

<mailto:macookson%40yahoo.com> > wrote:

> " give him 2 weeks with me and he'll stop acting like that! "

>

> " I would never put up with that crap from one of mine! "

>

> " you have so much patience! I could never do what you do! "

>

> " God never gives you more than you can handle. "

>

> " How do you do it? "

>

> Sigh.

>

> Sent from my iPhone

>

> On Jun 30, 2010, at 10:17 AM, Sara Cohen <pastmidvale@...

<mailto:pastmidvale%40gmail.com> >

> wrote:

>

> Some of my favorites:

>

> You people are just angels!

>

> I don't know how you do it!

>

> Why not send him XXXXXXXXX so you can have a life?

>

> I bet you could give him to the state - after all, no one can live

> with

> THAT!!

>

> If he were my kid, he wouldn't act like that.

>

> Don't you know hoe to discipline that brat?

>

> A good swift smack and he would stop XXXX.

>

> I know JUST how you feel - after all my son skipped school last week

> and I

> thought I would die.

>

>

[Guest guest]

I woke up this morning remembering what my mom said to me when she heard I was

pregnant for the third time at the age of 29. She says, " Why didn't you leave

well enough alone. You already had 2 healthy kids.... blah blah blah blah... "

I truly don't remember the rest but I did remember that much. And when my son

was born with DS and a serious heart problem, these words came back to me. It

wasn't until he lost his speech and the Autism seemed to take over that I threw

her words back at her. She did not recall saying them but admitted that she

probably did as that sounded like something she would say. Anyhow, I thought of

this when I woke up this morning and then I got up and started my day. 2 big

poopy messes to clean, 2 baths to give and a couple runny noses to

chase.....life is good and I mean that. It is a beautiful day and I am

thankful.

To:

From: hdauer@...

Date: Thu, 1 Jul 2010 08:39:53 -0400

Subject: Re: Stupid things people say to be nice.

As much as I'd like to be, I'm not very up on Bible scripture... but I

don't think it says anywhere in the Bible that God gives " special people

special kids " or " God doesn't give us more than we can handle " specifically.

People say things in their own way w/out thinking about what they are saying

(however stupid it comes out sometimes). A lot of things in the Bible are

taken out of context. I think the first is more or less God has a plan for

everyone - including our special children and ourselves - whether or not

we understand or like what His plan is. And the second refers to being able

to handle things through God and His strength and grace not on our own,

but leaning upon him.

Heidi

[Guest guest]

My family on both sides spent a lot of time blaming, denying, judging and just

saying all the wrong things to me about Lydia. The ultimate was my grandmother

who lives in Nova Scotia (granted in a pretty backwards place) But she told me

she always thought that people with Down syndrome where mixed with a pig. So I

actually had to tell her I did not have sex with a pig. Education about

chromosomes seems pointless with that level of stupid. At the time all that

really really hurt me, I am able to laugh now, what else can you do?

/mom to Lydia age 11

Re: Stupid things people say to be nice.

 

As much as I'd like to be, I'm not very up on Bible scripture... but I

don't think it says anywhere in the Bible that God gives " special people

special kids " or " God doesn't give us more than we can handle " specifically.

People say things in their own way w/out thinking about what they are saying

(however stupid it comes out sometimes). A lot of things in the Bible are

taken out of context. I think the first is more or less God has a plan for

everyone - including our special children and ourselves - whether or not

we understand or like what His plan is. And the second refers to being able

to handle things through God and His strength and grace not on our own,

but leaning upon him.

Heidi

[Guest guest]

OMG! That is really crazy! I'd never heard anything like that,

thank God; must be because she's so much older and quite ignorant

of biology. The worst I'd heard was from the new wife of my

husband's childhood friend. They married when both were about

40 and had both not yet had children. She commented to me that

her husband didn't want any kids bec/ having a child like

was his worst nightmare and he didn't want to risk it!! Of course,

I was horrified but held my tongue. I did feel some great satisfaction

a couple of years later to introduce them to my healthy baby boy,

born when I was 43 and my husband was almost 46. Ha! So there!

is a blessing and they would have been lucky to have her!

________________________________

To:

Sent: Thu, July 1, 2010 11:03:11 AM

Subject: Re: Stupid things people say to be nice.

My family on both sides spent a lot of time blaming, denying, judging and just

saying all the wrong things to me about Lydia. The ultimate was my grandmother

who lives in Nova Scotia (granted in a pretty backwards place) But she told me

she always thought that people with Down syndrome where mixed with a pig. So I

actually had to tell her I did not have sex with a pig. Education about

chromosomes seems pointless with that level of stupid. At the time all that

really really hurt me, I am able to laugh now, what else can you do?

/mom to Lydia age 11

Re: Stupid things people say to be nice.

As much as I'd like to be, I'm not very up on Bible scripture... but I

don't think it says anywhere in the Bible that God gives " special people

special kids " or " God doesn't give us more than we can handle " specifically.

People say things in their own way w/out thinking about what they are saying

(however stupid it comes out sometimes). A lot of things in the Bible are

taken out of context. I think the first is more or less God has a plan for

everyone - including our special children and ourselves - whether or not

we understand or like what His plan is. And the second refers to being able

to handle things through God and His strength and grace not on our own,

but leaning upon him.

Heidi

[Guest guest]

<<hugs>>...

Exercising is huge. I drag my 9-year-old out for walks a couple of times a

week, so he's getting exercise, too (and the 1:1 time is improving our

relationship!). It helps my mood that I'm starting to not hate my body so

much!! But mostly I just like doing something for myself. .

Sent from my iPhone

,

I cried when I read what you wrote.......you been spying on me???? You could

write my story. Hang in there and I give you a pat on the back for

exercising..... wonderful!

To:

From: macookson@...

Date: Wed, 30 Jun 2010 21:26:39 -0700

Subject: Re: Stupid things people say to be nice.

<<<hugs>>>.

I'm at the end of my rope sometimes, too. I have 3 kids on the spectrum, my one

with DS is the most severe but his big brothers struggle, too. Lil' sis is doing

fine but seems to have some areas where she has trouble. DH has Asperger's too

(no official dx but it's pretty obvious) and ADHD. With everything on my plate,

I am making time for fitness but have no social life. I have girlfriends but no

one gets my kids...and we don't go out. DH and I don't really have couple/family

friends. He tends to irritate people. He is incredibly critical and often glued

to some game on his phone, leaving pretty much everything to me. He's supportive

in that he helps out when I ask for it if he can. But emotionally, he's just not

able to be supportive and thank God for my girlfriends because they're who I go

to. I try with DH but he is so uncomfortable with it and clearly uninterested in

leaving the comfortable and predictable world of facts. My mom is having

trouble with her DH (my stepdad, prone to depression and resentful that they

didn't move to Mn last year) and thinks they will divorce; and my dad is scaring

me because he is refusing to have a Dr check his tremor, even though his brother

had Parkinson's. Me, I seem to be getting trigeminal neuralgia. My neurologist

says it's not related to the huge cyst in my sinus on that side (under that

cheekbone) but my chiropractor and his neurosurgeon friend think that the cyst

is to blame. What to believe?

Lots of pressure. Lots to cope with. 's poop issues are really not the

worst thing in my life (though his escapes from the backyard, over the 6' fence,

are definitely up there near the top.). I'm at the point where I can no longer

process things--it's all " just one more thing " . I've stopped beating myself up

for not being a perfect mom and started just aiming for doing my best. Working

out is big and I'm happy I do that. I try to soak in the tub a few times a week,

too. Next I'll be adding yoga and then I'm going to figure out what I want to do

with the rest of my life. :0

I'm digging my way back to myself. It's hard. But I think I'll get there. .

Thanks for listening!

Sent from my iPhone

Before even having an autism dx, just ds, my husbands ex wife told their

kids " how selfish of them to have a child when they were that old (39 &

42), they knew the thing would have down syndrome and

Now its just going to be a burden to you kids

Hence her nickname - puss gut

Kel

And like many of you, if one more person tells me that God doesn't give you

more than you can handle..... hate that line, has ds, autism,

epilepsy, sensory disorder, profoundly delayed, (not even sitting up at 2.5

years old , and the kicker, my dx of Multiple Sclerosis one year ago. This

is MORE than I can handle!

Kel

_____

From: [mailto: ] On Behalf

Of Wetter Grundulis

Sent: Wednesday, June 30, 2010 2:55 PM

To:

Subject: Re: Stupid things people say to be nice.

Ok, this is very interesting to me, as a person who tries to avoid

saying stupid things. So what would you PREFER for people to say?

Xxx,

Jen

On 30 Jun 2010, at 06:13 p.m., Cookson <macookson@...

<mailto:macookson%40yahoo.com> > wrote:

" give him 2 weeks with me and he'll stop acting like that! "

" I would never put up with that crap from one of mine! "

" you have so much patience! I could never do what you do! "

" God never gives you more than you can handle. "

" How do you do it? "

Sigh.

Sent from my iPhone

On Jun 30, 2010, at 10:17 AM, Sara Cohen <pastmidvale@...

<mailto:pastmidvale%40gmail.com> >

wrote:

Some of my favorites:

You people are just angels!

I don't know how you do it!

Why not send him XXXXXXXXX so you can have a life?

I bet you could give him to the state - after all, no one can live

with

THAT!!

If he were my kid, he wouldn't act like that.

Don't you know hoe to discipline that brat?

A good swift smack and he would stop XXXX.

I know JUST how you feel - after all my son skipped school last week

and I

thought I would die.

[Guest guest]

Omg. Are you serious??? Wow.

After was born, I was very depressed. I remember the first time I sat

down for family dinner. DH said " see, we're back to normal " and I ran out

crying because I felt that we'd never be normal again. Then there was the time

I was going thru the Why? Stage and DH jokingly told me that had DS

because I ate Lucky Charms while pg. I was crying and crying after that. Then

DH was kind enough to tell me that DS was the mom's fault like 90% of the time.

He wasn't trying to be an a**, he was just sharing info.

Sent from my iPhone

My family on both sides spent a lot of time blaming, denying, judging and just

saying all the wrong things to me about Lydia. The ultimate was my grandmother

who lives in Nova Scotia (granted in a pretty backwards place) But she told me

she always thought that people with Down syndrome where mixed with a pig. So I

actually had to tell her I did not have sex with a pig. Education about

chromosomes seems pointless with that level of stupid. At the time all that

really really hurt me, I am able to laugh now, what else can you do?

/mom to Lydia age 11

Re: Stupid things people say to be nice.

As much as I'd like to be, I'm not very up on Bible scripture... but I

don't think it says anywhere in the Bible that God gives " special people

special kids " or " God doesn't give us more than we can handle " specifically.

People say things in their own way w/out thinking about what they are saying

(however stupid it comes out sometimes). A lot of things in the Bible are

taken out of context. I think the first is more or less God has a plan for

everyone - including our special children and ourselves - whether or not

we understand or like what His plan is. And the second refers to being able

to handle things through God and His strength and grace not on our own,

but leaning upon him.

Heidi