RE: Stupid things people say to be nice.

July 1, 2010

Well I have heard a lot of stupid things in regards to especially

now that we have added Leukemia to our world but that one takes the

award for the worst. People are amazing in what they can come up with

as comforting things to say.

Carla, mom to 14 yrs, DS/Autism and Leukemia (dx 2-5-10) and

, 9 yrs.

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

(

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July 1, 2010

Hi ,

I felt the same way about the second he was born. I opted not to have an

amnio and take the extra risk when I wanted the baby no matter what. Honestly

I'm glad I didn't know about the ds because never having known anyone with it I

would have been terrified, especially of medical issues. I feel blessed to be

his mother.

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.

>

July 1, 2010

Okay the pig thing almost trumps demon! Wow - ignorance is fascinating and

always shocking.

We used to joke that Darwyn was part frog because his heart only had 3 chambers

like a frog! As for people who say they couldn't have a child like ours- if I

feel nice I explain that we thought the life of a person with DS could be full

and rewarding and that as a parent who loves a child, you learn what you are

capable of (more than I ever imagined) as each challenge emerges.

Tempting to also reply that for some people their capacity to love is limited to

when its convenient for them and that that is a sad thing. Especially for some

men who are unable to sacrifice their materialistic shallow conveniences and

pleasures to experience something more challenging and likely more rewarding.

And then smile and wait for them to figure out the insult.

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

July 1, 2010

I hate God never gives you more than you can handle. It's not true and not

scripturally sound, either. I like this from a writer on the subject:

There is one scripture that may well be the misinterpreted source of this

promise God never made, 1

Corinthians 10:13. â€œNo testing has overtaken you that is not common to

everyone. God is faithful, and he will not let you be tested

beyond your strength, but with the testing he will also provide the way

out so that you may be able to endure it.â€

No question, that is a marvelous promise

of Godâ€™s word. Itâ€™s easy to see how

someone might take it to mean that God will never give us more than we can

handle. But, letâ€™s take a closer look.

This particular promise of Godâ€™s word has to do with temptation. A

temptation, in particular, to turn away from faith and to sin. In that light, 1

Corinthians 10:13 makes a very

remarkable promise. We will encounter temptations

to turn away from God and to deny our faith. God will not spare us that test.

As long as we live in this world, the privilege of enjoying all

of Godâ€™s good gifts comes with the every day possibilities of

misusing his gifts. All of life is a gift. All of life is also an opportunity

to abuse Godâ€™s gift of life. Yet, scripture also promises us that we will

never, not once, encounter the possibility of

misusing the gift of God without, at the same time, God giving us an

alternative to sin, as the word of God says, a â€œway out.â€ That is not the

same as saying, â€œGod

will never give us more than we can handle.â€

Not sending this to preach; just to assure you that that phrase is misused and

please ignore it actively!!

Beth, mom to

________________________________

To:

Sent: Thu, July 1, 2010 1:36:01 AM

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

>

July 1, 2010

Do you remember where you read that?Â I have a similar opinion about I Cor.

10:13, that it's misused to mean that " God won't allow you more than you can

bear, " rather than, " God will provide the way out of temptation to sin. "

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.

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

>

July 1, 2010

Ah yes, that's the verse... and the word " tempted " would seem to be with

regard to sin not like circumstances like you said.

I think the original intent behind the " Welcome to Holland " poem was with

regard to a dx of DS not autism.

Heidi

July 1, 2010

Yes, that was the intent of the Welcome to Holland writing.Â I received it

right after my son was diagnosed with autism.

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.

Â

Ah yes, that's the verse... and the word " tempted " would seem to be with

regard to sin not like circumstances like you said.

I think the original intent behind the " Welcome to Holland " poem was with

regard to a dx of DS not autism.

Heidi

July 1, 2010

Hugs to you !

That’s tough, I am so grateful to have a husband that is in this 100% - we

know marriage is not 50/50 - it takes 100% form each of us. I really

don’t know how or if I could handle life right now without him and what he

does for this entire family. But like you we have no life outside of this

right now. I keep in touch with friends but it takes so much effort and

stress to go out, We both work fulltime and have a 5 year old as well as my

step kids 17 & 19, I am giving my sister my hot tub that I used to love,

because I am lucky to get a 7 minute shower, I haven’t stopped beating

myself up and carry a lot of mommy guilt when I have to say No to my 5 year

old daughter, DH and I have gone out once in 2 years – we are selling the

tickets to Wicked he got me for my birthday because we just are too tired to

even try to go out - thank god for old Fashioneds, my one drink a

night escape that makes me smile (hold on gotta take a sip) - I get about ½

hour a day to myself, right now, after the kids are finally in bed and

before I have to go to bed to get up for work and do it all over again.

I can relate to the no longer process things…… I cant – there is just too

much, me just over strep, then turn, and now Norah is battling it,

it never ends, and I haven’t been able to accept that yet. I am scared of

my future and my kids future and that I am making bad decisions now, while I

am still “ok”. I don’t want to look back and say I wish I would have… but

I don’t know how to just enjoy and accept this right now.

I wish you the best

Kel

_____

From: [mailto: ] On Behalf

Of Cookson

Sent: Wednesday, June 30, 2010 11:27 PM

To:

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

On 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>

<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>

<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.

>

July 1, 2010

Hey, Kel, are you taking meds for the MS?

Your day sounds absolutely exhausting!

My soaks are in the bathtub; no hottubs here (don't I wish!). They're short and

sweet. But they're something, they're for me, and, like your nightcap, they

make me smile.

Guilt sucks. . I'm sorry that you're feeling so much of it. Can you talk

yourself out of it?

Be good to yourself.

Sent from my iPhone

Hugs to you !

Thatâ€™s tough, I am so grateful to have a husband that is in this 100% - we

know marriage is not 50/50 - it takes 100% form each of us. I really

donâ€™t know how or if I could handle life right now without him and what he

does for this entire family. But like you we have no life outside of this

right now. I keep in touch with friends but it takes so much effort and

stress to go out, We both work fulltime and have a 5 year old as well as my

step kids 17 & 19, I am giving my sister my hot tub that I used to love,

because I am lucky to get a 7 minute shower, I havenâ€™t stopped beating

myself up and carry a lot of mommy guilt when I have to say No to my 5 year

old daughter, DH and I have gone out once in 2 years â€“ we are selling the

tickets to Wicked he got me for my birthday because we just are too tired to

even try to go out - thank god for old Fashioneds, my one drink a

night escape that makes me smile (hold on gotta take a sip) - I get about Â½

hour a day to myself, right now, after the kids are finally in bed and

before I have to go to bed to get up for work and do it all over again.

I can relate to the no longer process thingsâ€¦â€¦ I cant â€“ there is just too

much, me just over strep, then turn, and now Norah is battling it,

it never ends, and I havenâ€™t been able to accept that yet. I am scared of

my future and my kids future and that I am making bad decisions now, while I

am still â€œokâ€. I donâ€™t want to look back and say I wish I would haveâ€¦

but

I donâ€™t know how to just enjoy and accept this right now.