can of worms

[Guest guest]

OK everybody,

I know I'm probably going to open up a can of worms here. It's about the

whole MMR-Autism controversy. I am not a scientist, I don't know if there is

a link or not but this is what I'm dealing with at church of all places.

There are well meaning ladies who chalk it all up the MMR vaccine. I have

been holding my tongue and just smiling and saying that yes, we gave Hannah

the MMR vaccine because we knew her immune system was compromised and if she

did get these diseases they could very well have done her in. One of these

ladies ( a mother of 10) doesn't vaccinate her kids so she is essence relying

the health of mine to protect hers. Another lady doesn't even put Saran Wrap

on her food because she has heard that the plastics leech out into the food.

Where is the balance here between those who are yelling " The sky is falling "

and just living life?

What do they want me to say " yes, I'm a crummy mom and I've got the quirky

kids to prove it " ? I'm not going to say something horrible to them because

I'm not that type of person. The most I would do is avoid them, but I

shouldn't have to avoid them. I guess I'm just frustrated with it all. But I

must say that at least it's not like when Hannah was real little - birth to

2. Whenever I would go to the city park and let the other kids play and

Hannah was hooked up to tubes of every sort - I was asked several times

" well, didn't you know she was going to be Downs? " Like I'm going to abort my

kid? This is park bench talk? Has anyone else gotten that one?

Tactless in Seattle,

a

[Guest guest]

In a message dated 3/13/03 1:18:52 AM Eastern Standard Time,

kpblackmail@... writes:

<< I was asked several times

" well, didn't you know she was going to be Downs? " Like I'm going to abort

my

kid? This is park bench talk? Has anyone else gotten that one?

Tactless in Seattle,

a

>>

a,

If we knew what we were going to deal with, with any of our kids-disabled or

not, before we got pregnant, probably not many of us would have thought it

was a good idea to have kids! LOL The scare of all the bad things would

overshadow any good, I think. Having a healthy child is no guarantee you'll

have a nice, peaceful, happy life. I wonder, if there was a test during

pregnancy to predict things like: brats, drug abusers, alcoholics etc..if

people would abort? We already had two teenagers when I got pregnant for

Seth. I knew if I was making it through the teen years with kids, and in

spite of it I still loved them, I could make it through anything! LOL I

didn't need, nor want, to know if there was anything going on with Seth. Ya

know what? Our girls are in their twenties now, and things with them are no

easier than when they were teens! And I still love them, even though

sometimes I wish they would leave the nest! LOL

Gail :-)

[Guest guest]

In a message dated 3/13/2003 1:18:52 AM Eastern Standard Time,

kpblackmail@... writes:

> What do they want me to say " yes, I'm a crummy mom and I've got the quirky

> kids to prove it " ? I'm not going to say something horrible to them because

> I'm not that type of person. The most I would do is avoid them, but I

> shouldn't have to avoid them. I guess I'm just frustrated with it all.

a,

People love to judge. They love to look at your situation and feel that

they're not vulnerable to something like that happening to them. I've had

people ask me about that and my response is always that I believe in

vaccinating my kids and don't believe there's any connection (for the record,

that's just my opinion....I realize that many are of a different one) I

tell them that there is a very high incidence of autism in the DS population

and that this is true of many other conditions as well because of the extra

genetic material. That pretty much ends the convo. Everybody has an

opinion and the option to live their lives the way they want. I used to be

super sensitive to being judged. I've gotten much better at shrugging it

off.

<<I was asked several times

" well, didn't you know she was going to be Downs? " Like I'm going to abort my

kid? This is park bench talk? Has anyone else gotten that one?>>

Yep...my response to that is always... " No we didn't know ahead of time, but

she'd still be here anyway if we did " . AGain, when you say it with

confidence, people tend to back off.

{{{{{hugs}}}}}}} You're a good mom and a good person.

Donna

[Guest guest]

In a message dated 3/13/03 12:19:42 PM Eastern Standard Time, home@...

writes:

<< and she said, all without stopping, ³You know they have

tests for this now, did you have the test? Why didn¹t you abort your little

retard? Now she will just be a burden on the rest of us.² I was so shocked

and hurt that I couldn¹t say anything. My eldest, who was six at the time,

said, ³Don¹t you call my baby sister a retard... You ...you .... Big Poopy!²

I¹ve never been so proud.

>>

Therese,

I can't believe someone was actually THAT ignorant! Your six year old was

right...she was a big poopy! LOL I was having play rehearsal at my house a

few years ago for a few homeschoolers here. One of the teens told a joke

about a retard. I sat all the kids down and said *Seth is a retard and he

will here that word a lot out in the world, but he will never here that word

in his own home ever again*. I'll tell you, some of the kids did not know he

was retarded. They were so shocked. They asked how he could be retarded

because he was so cute. LOL So much meanness is done out of ignorance. LOL

I told them that even if they had straight A's in school, unless they were

THEEEEE smartest person in the world, they too were retarded (slower)

compared to that persons mind. I do believe they all learned more that

evening than just stage directions and their lines. Every rehearsal after

that they always took time to play with Seth and ask me tons and tons of

questions. I think it's much easier to educate kids than adults with that

lady's mindset.

Gail :-)

[Guest guest]

a,

The worst comment I received was from a pregnant woman at the grocery store.

She came up to our cart, was a baby in an infant seat, her sisters

were also with me, and she said, all without stopping, ³You know they have

tests for this now, did you have the test? Why didn¹t you abort your little

retard? Now she will just be a burden on the rest of us.² I was so shocked

and hurt that I couldn¹t say anything. My eldest, who was six at the time,

said, ³Don¹t you call my baby sister a retard... You ...you .... Big Poopy!²

I¹ve never been so proud.

People who don¹t get their kids vaccinated can do so only because most of us

take that risk. They benefit from it. At a different time, it was a

blessing to get your children vaccinated. I wish that they had the

chickenpox vaccination when was younger. ¹s autistic tendencies

surfaced following a terrible bout with the chicken pox when she was three.

She got them so bad, they wanted to hospitalize her because her skin was so

covered and the risk of infection was high. Her insides were all infected

too. It was horrible. I¹ve often wondered if that played a part in her

autistic disorder. She wouldn¹t let anyone touch her for months afterwards.

Therese

on 3/12/03 10:17 PM, kpblackmail@... at kpblackmail@... wrote:

> OK everybody,

> I know I'm probably going to open up a can of worms here. It's about the

> whole MMR-Autism controversy. I am not a scientist, I don't know if there is

> a link or not but this is what I'm dealing with at church of all places.

> There are well meaning ladies who chalk it all up the MMR vaccine. I have

> been holding my tongue and just smiling and saying that yes, we gave Hannah

> the MMR vaccine because we knew her immune system was compromised and if she

> did get these diseases they could very well have done her in. One of these

> ladies ( a mother of 10) doesn't vaccinate her kids so she is essence relying

> the health of mine to protect hers. Another lady doesn't even put Saran Wrap

> on her food because she has heard that the plastics leech out into the food.

> Where is the balance here between those who are yelling " The sky is falling "

> and just living life?

> What do they want me to say " yes, I'm a crummy mom and I've got the quirky

> kids to prove it " ? I'm not going to say something horrible to them because

> I'm not that type of person. The most I would do is avoid them, but I

> shouldn't have to avoid them. I guess I'm just frustrated with it all. But I

> must say that at least it's not like when Hannah was real little - birth to

> 2. Whenever I would go to the city park and let the other kids play and

> Hannah was hooked up to tubes of every sort - I was asked several times

> " well, didn't you know she was going to be Downs? " Like I'm going to abort my

> kid? This is park bench talk? Has anyone else gotten that one?

> Tactless in Seattle,

> a

>

>

>

>

[Guest guest]

Hi a,

I could do you a couple better than those stories!!!! :) I have a

friend who, at 47 thinks that she would like another child. This is

somewhere I didn't want " to go " with her because I have been very close to

this individual and I consider her a good friend but I knew that since she

was confiding in me about wanting another baby, the topic of DS was going

to come up. Well she had a visit with an OB last week to ask some

questions about getting pregnant at 47 and when he told her what her

chances of having a child with DS were (1 in 20), she asked him how safe

termination would be......this has made me very sad to come from such a

dear friend who is very attentive to my son with DS when she is around him.

here is another one for you:

In the last 6mos when I finally did reveal to one of my friends about the

ASD component of my son, she tells me " see, I told you years ago that he

shouldn't be consuming dairy products " . As if not consuming dairy

products would have prevented something and I was a bad mother for not

watching what I was feeding my son.

And yet another:

After having our son, my husband privately told three of his co-workers

about my son's DS diagnosis. The one couple that we went out with quite

often--the female said to my husband " don't worry, we will still want to be

friends with you " . Needless to say, they fell by the wayside very quickly

and I don't think that we ever did go out with them again!!!

And the winner of them all comes from my dear MIL:

After confiding in her my concerns about being able to provide for our son

after my husband and I are both " gone " one day, she looks at me blankly and

says " but I didn't think that people with DS even live that long " and my

husband and I would outlive him anyway.....that about takes the cake, don't

you think????

I have a few more stories but I am sure we could all go on with stories

from ignorant and insensitive people. I don't know what to say except " you

aren't alone " . Sometimes I just smile and walk away....I figure that this

is safer for me (and the other person) than an alternative that I could

come up with!!!!!!:)LOL

Maybe we can publish a book with everything we have all had said to us!!!!!

At 01:17 AM 3/13/03 -0500, you wrote:

>OK everybody,

> I know I'm probably going to open up a can of worms here. It's about the

>whole MMR-Autism controversy. I am not a scientist, I don't know if there is

>a link or not but this is what I'm dealing with at church of all places.

>There are well meaning ladies who chalk it all up the MMR vaccine. I have

>been holding my tongue and just smiling and saying that yes, we gave Hannah

>the MMR vaccine because we knew her immune system was compromised and if she

>did get these diseases they could very well have done her in. One of these

>ladies ( a mother of 10) doesn't vaccinate her kids so she is essence relying

>the health of mine to protect hers. Another lady doesn't even put Saran Wrap

>on her food because she has heard that the plastics leech out into the food.

>Where is the balance here between those who are yelling " The sky is falling "

>and just living life?

> What do they want me to say " yes, I'm a crummy mom and I've got the

> quirky

>kids to prove it " ? I'm not going to say something horrible to them because

>I'm not that type of person. The most I would do is avoid them, but I

>shouldn't have to avoid them. I guess I'm just frustrated with it all. But I

>must say that at least it's not like when Hannah was real little - birth to

>2. Whenever I would go to the city park and let the other kids play and

>Hannah was hooked up to tubes of every sort - I was asked several times

> " well, didn't you know she was going to be Downs? " Like I'm going to abort my

>kid? This is park bench talk? Has anyone else gotten that one?

> Tactless in Seattle,

> a

>

>

>

>

[Guest guest]

Hey a,

This stuff happens at all levels all the time it seems. I think that this

list is particularly gifted at welcoming everyone, no matter what our

different " beliefs " within our own disability arena of Down syndrome and

ASD. I think when people listen respectfully and don't tell someone that

they are WRONG for believing a certain way more people feel comfortable

enough to hang together and help one another. I think what often happens

is that people end up broadening the possibilities of helpful things after

hearing folks post here.

I have had a very good friend finally confess that she was so frustrated

with me because of the " way I let Ben eat " - meaning I allowed him

white flour, fig newtons, (sugar) and all kinds of things that were clearly

causing his hyperactivity. (She won't even use a microwave, and won't

store food in plastic, or use bleach.) I love this woman dearly, and so I

just told her that I respected her strong beliefs in what she was doing, my

DH and I believed that we were doing the best we could for Ben. And

we could agree to disagree. The thing is, my son has never had any

intestinal problems- no diarrhea, no growth problems, and only about three

bouts of stomach bugs when he vomited - in his entire life! This is a kid

who has had zero growth problems since he was two months old. I decided a

long time ago to do things in moderation with him, keeping an eye to

healthy, with a balanced diet, but that I would not make things forbidden

to him unless I had any data to confirm otherwise.

I have had a friend be very disapproving of me because I never learned to

sign fluently for my DH. (He is deaf, but uses a hearing aid and lip reads

very well. He also speaks very clearly- so, not a problem for us! )

Thank God there have only been a few people who couldn't understand why I

didn't have an amnio done. (I was over 35 and had to sign a paper saying

we'd been counseled!)

Every year I speak to a class of special ed teachers-in-training. It is at

a small Catholic college. Students sometimes are curious why I didn't have

an amnio, even if it was just to be prepared. I think the expectation to

KNOW is even stronger now than 13 years ago. In that context I don't have

any problem explaining why I wouldn't have the amnio and why I

wouldn't/couldn't abort.

I am on a few autism lists, but I find, sadly, there is too much contention

between the different factions. People who believe in ABA wouldn't dream

of doing anything else- and people wanting only sensory integration and

diet don't want their kids to turn into robots so they don't believe in

ABA....

I had a funny situation the other day when a dad who has a son with autism

and wants our school district to do something or they were going to lawyer

up- has been organizing parents- not a bad thing. But his rhetoric has

been, " I know that autistic kids can be helped a lot- maybe not cured, but

things can be turned around- unlike kids with Down syndrome.... " Yup. I

had to tell him about my kid who has both- and how much EI and knowledge of

the brain, use of technology, etc. etc. has changed things for our kids....

I am getting better about standing my ground over some of these things.

But oh my goodness! Some people are bold, aren't they?

Better to vent here, and then practice some comebacks so you will have more

confidence in figureing out what to tell them the next time.

I have been practicing something to use when relatives are in their overly

critical overdrive: " That is just not helpful to me right now! " Sort of

" if I wanted your help, I'd ask for it, and since you are being hurtful in

your attempts: That is not helpful to me! "

A friend of mine has a five year old with DS and some autistic behaviors.

He is just now walking and chewing. She is frustrated all the time with

the rude remarks that people make, thingking they know what she should be

doing to help him along better. Evern worse are the looks and the

unspoken, " Oh Honey, you think he's going to talk? He's just too low...! "

I think mamy of us here have stopped dealing with our local DS

organizations because of the judgmental attitudes that people unknowingly

inflict.

Thinking along the lines of " personal best " for my son, or " compared to

last year, look how much he has changed " , keeps his own differences only

being compared to himself over time, not any other kid with DS or with

autism. That has helped me a LOT. It has taken some nasty stings out of

my thinking about how hurtful the comparison monster can be.

And- keeping a sense of humor (which can be tough, I know) can sure take

the zing out of a lot of mean and petty things.

Keep your wits and your wit baout you- and keep posting!

Hugs,

Beth Mum to Ben age 12

[Guest guest]

I apologize for opening a can of worms. I really had no intention of

doing that. I have enjoyed reading everyones stories, have learned

so much from all of you. I have read past posts also, learning even

more. And for that I thank each and every one of you.

As stated again and again, each and every one of us has had their

own experiences, unique to only them. It is your experience and

yours alone.

So when I read " we 'ALL' have been angry " ...or " we 'ALL' made it

through one horror " ...your putting your experience on everyone else.

For some reason, it bothers me a bit. And when I finally stated my

feelings on scoliosis, surgeries and flatback. well it sunk like a

lead rock. I was thought to have been saying suck it up. Good Lord

NO! I would never do that. I am really sooo sorry you thought that

Joanie.

Anger is fine..I have wanted to sucker punch a certain physical

therapist myself.

Hope I made my self a little clearer...I have also deleted my file

and other posts as to not cause further friction.

gonna waddle off to my corner now..