Newspaper article

[Guest guest]

I can't say I was ever angry with God, but I do get angry. I do have my little

pity parties. I get mad because I can't get just any teenage baby sitter to

watch so I can go out. I get mad because I can't just send him to Sunday

school and have a joyous time in my own Sunday school/church. I get mad because

when I do have someone watch him, I get the was so bad stories, or worse,

they end up bringing him to me 15 minutes later and I still have to deal with

him, and I don't get my time at all at church. I do yell when my little rubber

band gets stretched too tight (like right about now). I do catch my self asking

why he does things, and then answering myself like I suddenly remembered, oh,

yea, it's because he's autistic. I do wish sometimes that he was JUST DS, and

the autism would go away. And I am very thankful for psychiatric drugs, and

then feel guilty for that.

I had better stop, before this becomes a rant, and nothing to do with your post.

I would say go ahead and mention feelings. None of us are super women. We

handle it, but not always gracefully, more out of necessity. And if I hear one

more time how I handle it so gracefully and never whine about my

situation........I'll scream loud enough for our friends across the pond to hear

me...

Loriann

[Guest guest]

Hi, Everyone..........The lady from our local paper (Kankakee) will be

coming Tuesday to interview myself and Gareth for the article on dual dx. I

am a bit hestitient about opening up feeling-wise. I'd like other opinions

to share with the world here. You can e-mail me privately if you want.

Basically, I need to know feelings............am I the only one who was angry

with God and the world for this autism crap when it showed it's ugly face? I

had just gotten use to the DS child. Do others get so upset with their kids,

that they feel an institution is right down the road (before meds, I

seriously considered this)? Do other people yell at their kids to stop

doing things that we know they have no control over? I am always telling

Gareth he's driving me nuts when he gets into his rocking and growling mode.

Am I the only one who thanks God for psychotic drugs and feels guilty about

it at the same time? Should I just accept my son the way he is without meds?

I want so much for him to be a functional human being........meds are the

only way for that to happen.

[Guest guest]

Feelings? We get to feel???

Let me just say that I am *tired.*

When it was just DS, people were comfortable. We butted heads here and

there, but no one felt he couldn't be taught.

Now that it's ds/asd, I'm the 'teacher' not the parent getting support. No

one's teaching him anything all that extra ordinary. Im *tired* of doing

the research.

So...how do I fell most days?

*tired*

But when he grins and runs up to me for a hug and a kiss, the world is

right once more.

j

[Guest guest]

I honestly thought was heading for an institution as well before I

learned how to teach him better ( for the most part ) behavior. I was, and

still am occasionally, thoroughly furious at the double blow. Mad at God on

the one hand, grateful for helping me deal with it on the other. I see no

reason to not express feelings, but I understand what you may be afraid of.

I certainly don't want pity, and I don't want anyone else to say I am

whining ( even though I do all the time). What I would really like is for

others to just be aware that I can't treat the same way I treat my

other kids and how they treat theirs. I have to be louder, firmer, more

dramatic, stricter in all ways for him to " get it " at all. I am not being

mean or cruel. I am trying to teach him the best way I know how in order to

( I hope and pray) allow him the chance to participate in our world. That

is what I wish others would realize. ine

----------

> From: mfroof@...

> egroups

> Subject: Re:Newspaper article

> Date: Sunday, May 28, 2000 5:21 PM

>

> Hi, Everyone..........The lady from our local paper (Kankakee) will be

> coming Tuesday to interview myself and Gareth for the article on dual

dx. I

> am a bit hestitient about opening up feeling-wise. I'd like other

opinions

> to share with the world here. You can e-mail me privately if you want.

> Basically, I need to know feelings............am I the only one who was

angry

> with God and the world for this autism crap when it showed it's ugly

face? I

> had just gotten use to the DS child. Do others get so upset with their

kids,

> that they feel an institution is right down the road (before meds, I

> seriously considered this)? Do other people yell at their kids to stop

> doing things that we know they have no control over? I am always telling

> Gareth he's driving me nuts when he gets into his rocking and growling

mode.

> Am I the only one who thanks God for psychotic drugs and feels guilty

about

> it at the same time? Should I just accept my son the way he is without

meds?

> I want so much for him to be a functional human being........meds are

the

> only way for that to happen.

>

> ------------------------------------------------------------------------

> Old school buds here:

> 1/4057/10/_/691668/_/959559724/

> ------------------------------------------------------------------------

>

>

[Guest guest]

In a message dated 05/28/2000 7:23:25 PM Central Daylight Time,

mfroof@... writes:

<< am I the only one who was angry

with God and the world for this autism crap when it showed it's ugly face?

I

had just gotten use to the DS child. >>

No, Margaret, you are definitely not the only one! Sometimes I just don't

know who else to be angry with but God. Who else has control? I sometimes

feel like " Hey God, wasn't DS and a whole bunch of medical problems ENOUGH?

Why autism too? Can't you give the poor kid a break? " Then I'll hear about

someone else's child who has cancer or died or something, and I feel guilty

for feeling that way. Sigh...

<<Do others get so upset with their kids,

that they feel an institution is right down the road (before meds, I

seriously considered this)?>>

Yes, Margaret, we actually toured two residential facilities because things

with had gotten so rough that I became depressed, my husband's health

was going down the tubes due to chronic stress (he is diabetic), my teenage

daughter was doing tons of extra-curricular activities probably to be out of

the house as much as possible, and my 5 year old son was reacting to all the

stress with behavior problems! We felt like our family life was spinning out

of control and totally revolving around and her needs and behaviors.

Now that she has the proper DX of autism, is on an effective medication, and

we are finally getting some in-home support, things have improved and we are

no longer feeling like a residential placement is around the corner for her.

It's difficult to admit that I actually considered this, but I truly feared

my family might not survive intact. Bob's father, who was also diabetic,

died at 52 - Bob is 50. I felt desperate to make some kind of change, but

couldn't bear the thought of no longer being under my care in my

house. There was no win-win solution. Many times I prayed, " Lord, why did

you send me this child to love and then make it impossible for me to care for

her at home? Please help us! " The day after we visited the 2nd facility, I

read the Disability Solutions on DS-ASD and the rest is history!

<< Do other people yell at their kids to stop

doing things that we know they have no control over? I am always telling

Gareth he's driving me nuts when he gets into his rocking and growling mode.

>>

Again, no, Margaret - you are not alone here. I get so frustrated sometimes

by her behavior that I can feel myself losing my temper and have to go away

from her for a time out of my own. Even though I know she can't help the way

she is, that doesn't necessarily make it easier to take.

<< Am I the only one who thanks God for psychotic drugs and feels guilty

about

it at the same time? Should I just accept my son the way he is without

meds?

I want so much for him to be a functional human being........meds are the

only way for that to happen. >>

You are absolutely not the only one who thanks God for meds!! I am thankful

for Risperdal every single day since she began taking it and have thanked God

because it has meant that I can keep her at home. I don't feel guilty about

giving her medication because I can see how much it has improved the quality

of her life as well as ours. is so much happier now, my husband's

health is better, my teenage daughter is spending more time at home, and my

son has settled down considerably. I figure, what's to feel guilty about? I

do accept the way she is. The fact that I give her meds does not mean

that I don't accept her the way she is. It simply means that I accept the

fact that she needs them in order to achieve her fullest potential in life,

and I'm immensely grateful that they exist. To me it is no different than

giving my teenage daughter Cardizem every morning for the rhythym problem she

has with her heart. This particular problem is benign in that it is not

life-threatening, but it does make her very uncomfortable and interferes with

her daily functioning, so I give her the med and she feels much better. She

doesn't need it to live, but she needs it to live with the quality that I

wish for her. Same for .

I know this was long, but I could relate to it so well. I hope it helps.

Good luck with the interview!

Maureen

[Guest guest]

Donna,

At the risk of opening the " Religion can " , I have to say I basically agree with

you. God doesn't make bad things happen, but he uses bad things for good. If

you're a Christian, Satan has to ask God if he can do something to you.

Sometimes God will allow it in order to make you a better person, bring someone

else to him, etc. Or maybe it's for the better (eternity speaking) for the

child who was affected.

And please don't flame me, that's just my opinion.

Loriann

[Guest guest]

Your point about the free will does actually fit how I feel. I'm speaking

strictly of saved people. God sometimes allows things to happen to draw us

closer to him. Before I became a Christian (and I've only been one for about 8

years -after was born), God had to bring me to my knees before I would

come to Him for answers. I lost my husband (I chose to divorce him), my son (I

didn't want to put through a custody battle so I gave physical custody to

DH, maintaining joint custody in major decisions), my childhood memories

(because I had repressed memories come forward of my grandfather molesting me),

my job (got fired on trumped up charges that had they been true, they would have

prosecuted, but since they weren't, they just fired me), and my reputation (I

got black-balled). Would I chose to go through that again? No. Would I give

it back? No, because it brought me to God. Everytime good things are

happening, I tend to forget to praise God for it. I don't want that to sound

like when things are going good, and one forgets to praise God, He'll strike you

down. That's not what I mean. But when bad things do happen, I draw closer and

lean on Him more.

We live in an unsaved world, because of free will. Just as I wouldn't want to

MAKE a friend love me, God doesn't make any of us love Him. Let's face it, our

kingdom is yet to come, this world belongs to Satan. God's desire is for all of

us to be saved and have a relationship with Him, and for all the pain to be

taken away, and some day it will. In the mean time, I have Him to strengthen me

through my trials.

Loriann

[Guest guest]

In a message dated 5/28/00 8:23:28 PM Eastern Daylight Time, mfroof@...

writes:

<< Basically, I need to know feelings............am I the only one who was

angry

with God and the world for this autism crap when it showed it's ugly face? >>

Well, I wasn't mad at God. I wasn't mad at Him when Maddie was born with DS

either though. I have long since come to terms with my version of God in

my life and that is that life is what happens and God is up there coaching

us. Truthfully, if I thought God allowed this to happen to Maddie, I'd be

more than mad at Him. There's just too much evil and anguish in this world

for me to allow myself to believe someone is up there orchestrating it for

whatever reason. I know this sort of goes against the grain of what many

Christians believe, but it's what I feel in my heart to be true---my version

of the real meaning of *free will*. But believe me, I have my times that I'm

angry and it's usually at life. I have my cry or whatever else it may take

and carry on. ANd Margaret, sometimes it takes a lot more than that!!!! But

IMO, the anger is a very normal thing.

<<Am I the only one who thanks God for psychotic drugs and feels guilty about

it at the same time? Should I just accept my son the way he is without meds?

I want so much for him to be a functional human being........meds are the

only way for that to happen.>>

I don't think you should ever feel guilty for using medicines that help

Gareth (note that Maddie is not on meds--just saying that so you know). And

I feel that Gareth being on meds has nothing to do with whether or not you

accept him. You've already demonstrated that you accept and love Gareth.

And you're doing an excellent job. One of the things that I personally have

a BIG problem with is feeling sorry for Maddie. Weird, huh? Since I can't

STAND for someone to feel sorry for me. I remember those first few months

after Maddie was born being overwhelmed with pity for my baby. I honestly

never felt angry, but I was devastated by my pity. I didn't want to feel

sorry for a child of my own. It took me quite a long time to get over it and

them WHAM......out came the autism. I must tell the truth and say that at 6

1/2, I am still dealing with my pity feelings for Maddie----but this time

they don't bother me as much as when I dealt with the DS. Maybe I feel it's

more appropriate...I dunno. I've been too busy just dealing to delve, ya

know?!? But Margaret, no person's feelings on the issue are wrong or

right---they're just unique to that person. Many of us have those similar

feelings at various times in our life........but you love Gareth and are

doing the absolute best for him that you know how. No one in this entire

world could ever ask or want for more!!

{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}]

And always vent away!!! We ALL always care and never judge!! THat's what I

love about this list!! I genuinely feel I can speak from the heart and not

be judged!!

Donna

[Guest guest]

> Basically, I need to know feelings............am I the only one who

> was angry

> with God and the world for this autism crap when it showed it's ugly

> face?

I get very angry that Matt behaves the way he does, and I think I get

more angry the others (DH in particular) sees this as much as me not

diciplining him as his medical condition with behaviorial implications.

Do others get so upset with

> their kids,

> that they feel an institution is right down the road (before meds,

> I

> seriously considered this)?

Lately, I have been thinking more and more about this. Especially during

his track breaks from school, I just get so down because I CANNOT provide

the consistency that he needs to function optimally. Or even function at

all. I keep thinking that maybe someone else can do it better. I know

that no one else can love him the way we do, (Except for maybe Mrs. Ray,

his 1st grade teacher), but he needs more than just love. I'd better

stop, tears tear up a computer!

o other people yell at their kids to

> stop

> doing things that we know they have no control over?

Yes, yes, yes, yes, yes, yes.

I

> Am I the only one who thanks God for psychotic drugs and feels

> guilty about

> it at the same time?

I had to put Matt on a drug for long term alcoholics and heroine addicts

at age 4. Talk about looks from the pharmacists!

Should I just accept my son the way he is

> without meds?

> I want so much for him to be a functional human being........meds

> are the

> only way for that to happen.

>

I am torn with this too.

Sorry I couldnt' help. Just co-miserate!

S

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

AMEN MARY!!! VERY WELL SAID......LEAH

[Guest guest]

Donna,

I am a Christian, too, and I also believe that life is what happens and God

is coaching and supporting us. To me, it would be very hard to love a god who

put things on you ,just to see if you could handle it! I was very angry at

" life " when Reuben was born with all his problems. (He had open heart

surgery when he was 5 weeks old.) But if I didn't have God to depend on and

get us through, I don't think we could make it. He is our strength. I just

have a " pity party " when I get really down. Rant, and rave, and cry. Then I

crawl up in God's lap (so to speak) and He makes it better! ita

[Guest guest]

In a message dated 5/30/00 2:13:05 PM Central Daylight Time, duffey48@...

writes:

<< I genuinely feel I can speak from the heart and not

be judged!! >>

I agree 100%. There is no judgement here. I feel only acceptance.

Maureen

[Guest guest]

In a message dated 5/30/00 5:03:31 PM Eastern Daylight Time,

hsmyangel@... writes:

<<

And please don't flame me, that's just my opinion. >>

Loriann,

I would never flame you. That's the wonder of this list!!! Never mind

that I respect your opinion.

<<God doesn't make bad things happen, but he uses bad things for good>>

I also don't want to open the *religion can* because I'm sure everybody here

has their own philosophy.....but since you're asking me.....I don't believe

the above. That statement still makes for a very manipulative God and I

choose not to believe that's how it works. I won't go into examples since we

could all just read the front page of the newspaper. See, I believe it's

called free will....something I learned at a very early age. But when I was

six and learned free will, it meant to say yes or no to temptation. I think

as an adult, it's much more complicated than that. As an adult, it's all in

how you deal with the *hand you are dealt*. Let's face it; we all know or

at least have heard of people who have kids with DS or kids with autism and

are NOT dealing.......matter of fact, kids are being abused or worse. I

choose to believe that God didn't plan this----that life happened and that

free will happened and that if we love God and pray to Him for faith and

strength, we can get beyond our sorrows and work towards bettering the world.

That's just what *I* feel.

<< Sometimes God will allow it in order to make you a better person, bring

someone else to him, etc. >>

Well, the reason this statement doesn't work for me is because there is so

much agony in the world, that the number of suffering is beyond us. I just

can't believe that God is up there saying that millions of babies and

children *have* to die to prove a point......or to save one...what about the

ones that were lost. What makes the ones sacrificed so much less important

than those saved? That may work in war theories although I still have a hard

time with that.

I *do* however feel truly blessed that Maddie was brought to us. If we are

better people, it's because she has shown us how to be. Was that because of

God? Maybe? But I prefer to think that it was because of our family and

trust in each other, which indeed comes from our faith in God. BUT, that

doesn't happen to a lot of people and it's my belief that it's false to

think that just assuming it's *in God's hands* makes it all turn out ok. ANd

life may sound rosy from everything I just said....BUT you all know better.

Maddie pooped all over the furniture for the FOURTH time this week (I am

calling POttery Barn for a specific cover for our furniture so it doesn't get

destroyed more). We went down the shore (against my wishes) at my DH's

parent's house because he just really wants to be there (HA HA). Poop

everywhere and DH and I were scrubbing and cleaning up all weekend. Maddie

is throwing up everywhere also, so I just keep baby wipes and wet cloth handy

(GI doc has STILL not called----I'm ready to blow a gasket). I am beyond

worried about her reflux condition and losing major successes that have taken

us SO long.........But I pray for energy and strength and the ability to

communicate my anxieties and angers to those I love. That's what I pray for.

And I believe it *is* being Christian.

It's what I believe.......may be different than your beliefs. I am a

practicing Catholic and have issues with the Church.... you can bet. But I

follow a basic philosophy that gets me through.....isn't that really what

it's all about!

Heck, I've had this discussion numerous times------this is the first time

I've said this much....because I feel comfortable!!! Loriann, I admire you

for speaking your opinion and hope you respect mine.....I already know you

do...{{{{{Hugs}}}]

Donna

[Guest guest]

In a message dated 5/30/00 5:54:55 PM Eastern Daylight Time,

heirbornpr@... writes:

<< Then I

crawl up in God's lap (so to speak) and He makes it better! ita >>

Wow ita!! I really like that phrase!!

Donna

[Guest guest]

Isn't it amazing how the DoD continues to tout how this vaccine has been

approved since 1970 and yet they still don't know the proper route of

injection nor how many doses are effective? Proof positive that this

1970 FDA approved vaccine is still an experimental vaccine! I do believe

that the 1995 and 1999 Investigational New Drug applications submitted

by Dr. Myers also proves this fact. I can tell the CDC, FDA and DoD

right now how to improve the adverse effects reporting procedures! STOP

intimidating, threatening, and giving false medical diagnosis to those

that report an adverse reaction to this witch's brew!!! Also, give the

troops the proper information on how to report a problem with this

vaccine!!! And that bit of honest advise didn't cost millions to

research! Marie, thanks for the info and if you run across the link to

this story, please post it would you?

Bill

Marie Schatz wrote:

>

> Associated Press -Lansing: Anthrax testing to begin

> I'm sorry I don't have a link but I'm sure you guys can find it.

> Basically it says:

> that new tests could begin next week - they will be coordinated by the CDC.

> Also says military leaders plan to restart the program early in 2002 if the

govt approves Bioports vaccine process at renovated labs.

> " The studies that may begin next week won't determine whether there are

long-term health effects associated with the vacine. But another branch of the

CDC...will look at some safety issues related to the drug and the procedures for

reporting adverse effects " .

> " The project will seek to determine if the vaccine can protect recipients who

receive fewer doses than now required by the FDA and the military "

> The human clinical tests will seek to determine whether the anthrax vaccine is

best administered under the skin or directly into a muscle........

>

> So they are spending millions to determine:

>

> if intramuscular injections reduce swelling and rashes and

> whether the vaccine protects monkey's vs. anthrax with fewer shots

>

> Great (heavy heavy sarcasm).

>

>

[Guest guest]

Do you have the email address of the reporter?

Rita

[Guest guest]

I sent the front page, scroll down to article, click on article and at the

bottom of article is his name and email address

Coleen

AtTheLake wrote:

> Do you have the email address of the reporter?

>

> Rita

>

>

>

[Guest guest]

Tony Cappasso can be reached at 788-1543 or tony.cappasso@...

Article:

http://www.sj-r.com/news/Wednesday/n.htm

=-)

Cheryl

http://www.lymeinfo.net

>Do you have the email address of the reporter?

>Rita

--

[Guest guest]

Thanks Autumn,

I'll be checking it on Sat.

le

[Guest guest]

KEWL! I'm going to check it out. Thanks for sending!

Pattie

Newspaper article

From Autumn (Mom to Mark Cd5-Cd19 PID)

Just thought I would let you all know that our local paper did a follow up

story on Mark (first one was done in the summer). Mark will be featured on

the front page of The Oakland Press Saturday edition (2-16-02). You can

read the article on Saturday by going to:

www.theoaklandpress.com

A warm welcome to all the newcomers~

Always,

Autumn )

[Guest guest]

Autumn,

Now neat! I read the article and I still am just amazed at the strength

that you and your family have, especially Mark with all that he goes

through. What a great kid you have there!

[Guest guest]

Autumn,

Now neat! I read the article and I still am just amazed at the strength

that you and your family have, especially Mark with all that he goes

through. What a great kid you have there!

[Guest guest]

In a message dated 2/15/02 3:52:03 PM Pacific Standard Time,

autti@... writes:

> www.theoaklandpress.com

>

>

Autumn,

A great article on Mark! Im sorry he has to continue the shot until August,

but if it keeps him going then Ill be praying for less side affects. Did he

get his Tony Hawk skateboard? I'll be praying for you and your

husband........I know how hopeless it can feel when you can't do something to

help.

Our local paper also did a write up on .....if your interested it can be

found at http://www.chicoer.com/display/inn_recess/recess1.txt

le

[Guest guest]

In a message dated 8/7/03 9:09:16 AM Pacific Daylight Time,

srippetoe@... writes:

> Can they be sued for providing misleading info and not providing the whole

> truth?

Believe you could make a good case for fraud, though might be an uphill

fight. So, what else is new??!! Maybe better would be to file a motion for an

injunction...that the health dept. provide reliable, accurate information for

parents. I believe that is the way I would go.

Incidentally, I appreciated hearing your story. Good for you, Kay!! Lot of

lies about HIV=AIDS, too, as I have increasingly come to see over the last few

years. Please don't let ANYONE you know take AZT and other antivirals, as

these are dreadfully toxic. Anyone desiring more of the complete story may

email me directly. No ax to grind..just facts.

--Doc

[Guest guest]

The thing that made me so mad was the article stated it was " Kentucky state law "

to have your children fully immunized to enter public school! That is soo not

true! Grrr...

I'll have to word my letter carefully so they won't throw it in the " crack pot "

pile. : ) I thought I would say something like, " While it may be recommended

that children's immunizations are up to date in order to attend public school,

medical and religious exemptions are permitted under Kentucky law #XYZ which

states such and such... "

Kay

**************

Good for you! I noticed for my dd's elementary school that they DID mention

exemptions in the policy book,but I doubt most parents take the time to read the

whole thing.I did and I don't even know if I will ps or hs my kids when the time

comes.To bad you could not have added a flyer to to the paper mentioning the

exemptions,but I am sure that is probably a no-no.

sara

Newspaper article

My children deliver the little community paper to our neighborhood once a

week. I was glancing through it last night when this headline caught my eye,

" Health Department Helping Parents. " Well, it turned out to be all about how

important immunizations are and that they are " required " for children who attend

school in Kentucky. It went on to say that a child won't be allowed to remain

in school without updated immunizations.

How convenient, too, that the school and health department will be open later

hours and having special immunization clinics set up to make sure children get

their shots My kids thought I was going a bit bonkers when I got angry reading

the article. I showed them how the article was full of lies. That there was

no mention of exemptions. That their use of " required " and " must have " and

" won't be allowed to attend school without them " are all blatant lies!

So, I told my children I was going to write a letter to the editor of the

paper and request that they publish Kentucky's law on exemption for

immunizations. (I will conveniently provide that for them of course!) : ) I

really doubt that they will print my letter (they print some letters to the

editor).

My children thought it was pretty cool that I'm going to do this. I also have

talked with them in length about avoiding these shots for the children they may

have some day (they are 12 and 13).

Just wanted to vent. It makes me so mad that no one ever mentions exemptions.

I've seen signs out all over in front of schools reminding people to get their

childrens' " mandatory " immunizations before school. : (

Kay