Re: Question, may be controversial

[Guest guest]

rowan's story is very similar to johnny's. we too had just come back from

vacation when rowan got his MMR shot- 2 months away from home in fact.

afterwards he developed a fever which is fairly usual but he just wasn't

himself, then the spots broke out - he had contracted the measles from the shot.

this too i understand is not too unusual. previous to the shot rowan had 5

words and was waving good bye. after the measles that stopped. at the time we

thought it was a result from being abroad for so long and then getting measles

that made him " not himself " . it's so hard to know. i am more concerned with

the " what do we do now " then the " how did this happen " . just the same, if i had

another child i am not sure i would immunize.

michelle

Re: Re: Question, may be controversial

ny got Violently ill after his MMR shot. It was given with two

other shots at 12 months. We had just come back from vacation a week

before he got the shots so I'm not sure how much of a factor that was

in his subsequent behavior. All I know he was vomitting and had a

fever for about a week after and was acting very strangely. Crying

and very clingy. Then he calmed down. He was starting to say a few

words before the shot and in my calendar I had indicated that he was

waving Bye and he stopped doing that after the shot also.

He never had stranger anxiety as a baby. So frankly I'm up in the air

about whether the shot caused the autism or he was born with it. He's

never had any of the bowel problems associated with mmr caused autism.

Also I just saw a web site that said that premature cutting of the

umbilical cord can cause autism, this is done on premature infants and

ny was born at 32 weeks. So i have no idea what could have caused

his autism.

jen

>Karin~ Both my boys got there intital MMR vac. I did not notice any

>change after, both of them had obvious delay prior. I did refuse the

>booster for both of them and have expemtions for both. I figure when

>there is a question and no answer about the issue, I wasn't going to

>chance my children regressing at all with a 2nd MMR.I am not saying i

>beleive that it is a cause, or that I don't.... I really don't know

>but I would rather be safe than sorry.:)

>

>Amy mom to

>Noah 6 Lucas 8 ASDs

>

>

>

>

>

>

>

>

[Guest guest]

here, here jacquie!!!! enough with the guilt and wondering already. lets get

down to the business of helping these kids!

Re: Re: Question, may be controversial

> Also I just saw a web site that said that premature cutting of the

> umbilical cord can cause autism, this is done on premature infants and

> ny was born at 32 weeks. So i have no idea what could have caused

> his autism.

>

>

> jen

I saw that website too, Jen, and FWIW I think it's a load of crap.

Every single one of us has done something someone says causes autism.

Jacquie

[Guest guest]

>

Has anyone else, thought it was genetic. Do any of you have history of

autism in your backgrounds? Amie

Genetic here. My sister is also autistic. She's soon to be 27 and doing

very well. Sometimes I post stories because she can be pretty damn

funny at times. Anyways, my cousin's boy just had autism added to his long

list of disorders (poor baby). Also, there is a long history of mental

illness as well. I believe that is one of the factors according to Temple

Grandin along with migraines (also in my family) and something else.

Amy H--in Michigan

Kepler 5 ASD and Bethany 6 1/2 NT

" Eternal vigilance is the price of liberty. " ~ Jefferson

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[Guest guest]

> >That reason being, when I first had him and we were still in the

>hospital,

>I had this feeling in my gut something was wrong. He was very badly

>jundiced, but I knew there was something more.

>

>Amie, I had the same feeling about . He was badly jaundiced too, and

>he

>could NOT tolerate skin-to-skin contact. He also REFUSED to be swaddled,

>screaming when he was. He was like no other baby I'd ever seen.

You can add Kep to this list. He was also badly jaundiced. The moment he

was born, the doctor grabbed him and Kep arched his back and nearly jumped

right out of the doctor's hands. We laughed about it at the time, but I was

worried too. I just knew it wasn't right. Kep was the opposite though,

loved the swaddling.

Amy H--in Michigan

Kepler 5 ASD and Bethany 6 1/2 NT

" Eternal vigilance is the price of liberty. " ~ Jefferson

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[Guest guest]

Same here Jacquie--they say that skin to skin is comforting to the babies--not

my child. I tried my damnest to b/feed him--but he wouldn't do it, it was

really strange. I was told by the home health care nurse, his Jundice had

something to do w/ that. He's level shot up to 19.5. It came to the point, he

wouldn't even eat. Me beng a first time mom, I had heard they weren't hungry

the first few days, so I believed it. I would try like hell to breast and

bottle feed him. His jundice made him so weak, that he couldn't even swallow.

We had to use a syringe for a few days to feed him. It was like feeding a baby

bird. Then we would have to rub his throat to get him to swallow it. It was

awful. Then his levels rapidly went down when they brought over those lights

and put it into his bassinet. When he was better and over the jundice, I would

wanna hold him and try to b/feed again--he would scream. Even as a baby, he

enjoyed being alone. He was a sweet baby, a very good baby to be exact, but he

didn't wanna be held or snuggled much:(. It broke my heart. I'm sorry you had

to go through that as well, but it is comforting to me to know I'm not alone

thinking he was born this way. I thought I was crazy for along time. Amie--who

probably is really crazy, just in denial.

Re: Question, may be controversial

>That reason being, when I first had him and we were still in the hospital,

I had this feeling in my gut something was wrong. He was very badly

jundiced, but I knew there was something more.

Amie, I had the same feeling about . He was badly jaundiced too, and he

could NOT tolerate skin-to-skin contact. He also REFUSED to be swaddled,

screaming when he was. He was like no other baby I'd ever seen.

Jacquie

[Guest guest]

My heart goes out to you too Becky. That is very admirable you are adopting a

special needs child. Alot of folks would want a " normal " child and not deal w/

the problems. Since you are in the process of adopting , can u get the

lawyer or whoever is doing his case subeana them to court for their biological

backgrounds? I hope u can find a way to get his medical. They're being really

shitty in my book. Hugs--Amie

Re: Re: Question, may be controversial

Amie

we are in the process of adopting . He has been with us 8 years. His

bio family also refuses any medical info. We have tried to express just how

important this is and their veiw is " so what its not my problem " GRRRR!!!

All we know is was normal development and functioning until 9 mo old

tha siezure so bad they life flighted him and than found he had lead

poisioning. he was full term. =That is it. and the only reason we know it is

because he was a foster child to us first and we got this info from the

agency on placement. Its really to bad that they are being this way my heart

goes to you for not getting the info you want

hugs

becky

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[Guest guest]

I think I could be somewhat on the spectrum as well. School was difficult to

me, unless it was one on one training. When I had a tutor I did great. I hate

social surroundings as well. I feel very uncomfortable around groups of ppl,

almost to the point I just wanna run out of the room screaming. I am a loner as

well. I always chalked it up as being an only child, we get used to our privacy

and being alone. I love music. When I was little and still to this day, if the

lights are left on in the car so to say and it starts that beeping sound, I'll

bing along w/ it silently in my head--of course, karson does it out loud. Any

sound he repeats. A vacuum, dryer, or dishwasher is to much racket at times for

me to take also. I thought that was just because I hate housework--LOL. But

since having Karson and looking at how different he is, I thought, well maybe he

isn't so different, he is like me in a way. I can understand why he does

certain things, coz I did/do them also. I learned on this list, autisic angels

live their lives in fear. I do too--I am a very paranoid person and ppl

intimidate me alot. It takes alot for somethings to click in my head, usually I

respond well to visuals and can't be read to--I have to read it to myself to

comprehend it, or my mind just wanders away. Karson has a fantastic memory and

I do to as well on little things, not big things. Things that are of no

importance--I remember. When Karson was diagnonsised it got me thinking and

that's when I started looking for my birthfamily. I have also read about the

gene trait and it seems really important to me know to know these things about

my bio-family. Sigh--oh well. I'll keep my chin up regardless:). Amie

Re: Question, may be controversial

>Has anyone else, thought it was genetic. Do any of you have history of

autism in your backgrounds? Amie

I believe 's is genetic. There is no autism in our backgrounds, unless

you count that Marc and I both APPEAR to be on the spectrum -- but that's

not confirmed. But there is a lot of chronic mental illness in my family,

with a couple cases of bipolar disorder -- and they have found that autism

CAN appear on the same gene that bipolar can appear on. Since I am bipolar,

I feel I probably passed that gene on to him.

Also, the fact he was so different from birth just screams genetic to me.

Jacquie

-who's not classifying autism as a mental illness.

PS -- Temple Grandin says there are three things in a family history that

can point to genetics. Can anyone remember them? I just know that we had

them all.

[Guest guest]

'boys talk late',

'he'll talk when he's ready,' and 'let's see about getting YOU some

counselling for your anxiety.'

OMG--Yes yes yes. I have heard these a million times, before Karson was

diagnonsised and I understand it was ppl trying to comfort me or whatever, but

comforting is not what I needed--answers were. Amie

Re: Re: Question, may be controversial

> About a year after her diagnosis at 6, I sent the service a letter

> telling them that I wasn't casting any blame, but that they needed to

> listen to their patient's mothers a bit more carefully. I also sent a

> copy of her eval & dx. Needless to say, they never responded.

I always WANTED to do that to the doctors who told me 'boys talk late',

'he'll talk when he's ready,' and 'let's see about getting YOU some

counselling for your anxiety.'

Good for you, Tina!

Jacquie

[Guest guest]

>bassinet. When he was better and over the jundice, I would wanna hold him

and try to b/feed again--he would scream. Even as a baby, he enjoyed being

alone.

OMG Amie. it's like reading something I wrote. I was the only one I'd met

until now whose baby had such a violent negative reaction to breastfeeding.

I was CRUSHED. But he was so MISERABLE! We tried for 8 days, and just kept

losing weight and losing weight...when we started bottlefeeding him, he

would take 8oz at one time. When I tried to breastfeed, we'd just sit there

in the chair, him purple and screaming and arching his back, me sweating and

crying and feeling utterly useless... It was a horrible, HORRIBLE time.

I'm glad that I know now about sensory defensiveness. It's really cleared

up a lot of the guilt that was instilled by 'well-meaning' strangers who saw

me bottlefeeding him in public informing me snottily that 'breast is best',

after which I'd go home again and cry and cry and feel overwhelmed by guilt.

In a perverse way, it's wonderful to read your story and know I wasn't

alone. :-)

Jacquie

[Guest guest]

emerld wrote:

> Also I just saw a web site that said that premature cutting of the

> umbilical cord can cause autism, this is done on premature infants and

> ny was born at 32 weeks. So i have no idea what could have caused

> his autism.

>

>

> jen

>

This is a new one on me. I can't imagine how in the world they came up

with this idea. If it is a cause of autism than about 95% of the kids

born in the US will develop it because early cord clamping/cutting is

standard procedure in most hospitals. It's not just premies that get

their cords cut really quickly.

~ Karin

[Guest guest]

Amie Lehman wrote:

> Has anyone else, thought it was genetic. Do any of you

> have history of autism in your backgrounds? Amie

> Karson 3 PDD-NOS

> Peyton 19 mos NT

>

Here is my very early theory on this: (remember I am such a newbie about

all of this, so don't take me too seriously - I am just musing)

I think there almost has to be a genetic link to Autism. If the shots

alone caused autism than there would be a lot more of it out there and

that is precisely the reason why the medical community doesn't want to

research the vaccination link. (well, at least part of the reason) I

think there must be a at least a genetic predisposition to it and then

added factors - whatever they may be, including vaccine reactions - can

either bring it on full-blown or aggravate a condition that may have

already been exhibiting symptoms since birth. In my son's case I saw

symptoms of sensory problems and social integration problems before he

ever got his first vaccination. There is no history of autism in our

families at all, I do have one grandparent who had Alzheimers and that's

about it as far as brain disorders go. I do see a few autistic type

signs in both my husband and my family (more on my husband's side) so I

think my son was just unfortunate enough to get the wrong combination.

Or maybe it was something developmental when he was in the womb. I

think it will be a long while before we know much more.

Also, I am a couple of chapters into Karyn Seroussi's (sp?) book about

it and she says she thinks it is an autoimmune disorder. I haven't read

enough of the book to understand her reasons for that yet, but I have

been interested in autoimmune disorders for awhile. There was an

explosion of people getting dx'ed with autoimmune disorders in the

1990's in my life. (people I knew personally) Chronic Fatigue

Syndrome; Lupus; Multiple Sclerosis and Fibromyalgia to name a few. I

think something weird is going on with our health in this day and age.

I think Autism is growing exponentially too. Our immune systems are not

working properly and often they are attacking us ourselves. I live by a

theory that a healthy immune system is one that is exercised. So I

don't suppress every symptom my body exhibits. If I have a runny nose I

don't try to dry it up, if I have a cough, I don't take a cough

suppressant (right away), I leave fevers alone unless they climb too

high. I figure that my body is trying to cure something and I try to

let it work for as long as possible before jumping in. Sometimes it is

hard to live with symptoms because now-a-days we don't have the time and

patience to be sick. When our body is screaming : GO TO BED AND REST;

we just can't do it. Anyway, my big problem with vaccinations is that

it takes a disease and injects it straight into our blood system so that

we will form antibodies against it right? Well, this method goes right

past all of our bodies defensive systems. Normally if I were exposed to

a person with Measles for instance, I would have a few barriers between

me and the sick person before I would myself contract the illness. I

have my skin, my mucus membrane system, in some diseases I also have my

lungs and my body's ability to cough up (and out) the bacteria. By the

time my blood stream has formed antibodies to go and fight this illness

the outer defenses have already been working on it and some defenses are

so good that even if exposed a person may not get the disease. When we

vaccinate, we skip all of that and inject a disease into our blood

stream. Good in theory, but what if it isn't good? What if we are

actually hurting our long term health or damaging our immune systems?

Well, I could ramble on and on about this but I don't know anything for

sure, these are just thoughts that I've come across in my pursuit of

natural health issues. However, in autism cases, I think that there is

a very good chance that these particular kids (not all) are more

susceptible to the problems that can be created with a vaccine due to

the " whatever " that is going on with the ASD (possibly genetic in

origin) and then it explodes and the kid gets bigger problems. It's

possible that in some cases a person has those " masked " symptoms or

autism-like symptoms that are dormant and then the shots bring it out

somehow. These would be those cheery typical babies that just sink

after getting shots (any of them possibly or perhaps the main culprit

MMR or maybe it's just that so many are given at one time). That brings

up another problem: no one would be exposed to all of these diseases at

once, and yet we expect little babies or toddlers to accept these

diseases (even " dead " versions of them) and form antibodies all at the

same time. What are we asking their little immune systems to do?

Sorry, I guess I've gone off on a rant. :-)

Take care all,

~ Karin

[Guest guest]

I heard all these platitudes too and if the appoitments in this office

weren't scheduled 15 minutes apart (and I saw the actual doctor about 5

minutes of that time) then I would have definitely talked to him more

about it a long time ago. I just felt *I* was instinctually wrong. ;-/

~ Karin

The Hunny Family wrote:

>

> > About a year after her diagnosis at 6, I sent the service a letter

> > telling them that I wasn't casting any blame, but that they needed to

> > listen to their patient's mothers a bit more carefully. I also sent a

> > copy of her eval & dx. Needless to say, they never responded.

>

>

> I always WANTED to do that to the doctors who told me 'boys talk late',

> 'he'll talk when he's ready,' and 'let's see about getting YOU some

> counselling for your anxiety.'

>

> Good for you, Tina!

>

> Jacquie

>

>

>

[Guest guest]

The Hunny Family wrote:

> I'm glad that I know now about sensory defensiveness. It's really cleared

> up a lot of the guilt that was instilled by 'well-meaning' strangers who saw

> me bottlefeeding him in public informing me snottily that 'breast is best',

> after which I'd go home again and cry and cry and feel overwhelmed by guilt.

>

> In a perverse way, it's wonderful to read your story and know I wasn't

> alone. :-)

>

> Jacquie

>

I'm so sorry that you received this discriminatory treatment! I know so

many breastfeeding women who were harangued and made to feel guilty for

feeding their children in public (even if completely covered), so it is

a huuuge shame that a breastfeeding woman (or anyone) would treat you

this way! It's sickening actually.

I never thought about it before but I can imagine that breastfeeding

would be particularly hard on some ASD children since there is all the

tactile stimulation of the feel in his mouth and the feel of the breast

against his face and then also their would be the smell of breastmilk

and body smell, which to typical babies would be attractive but maybe

not so to an ASD baby.

Did anyone see that Dr. Phil show about women who didn't want to be

Mothers? (and who already were mothers?) Well, after watching that

show I think we can safely let go of aaaaallllll of our guilt!!!!

~ Karin

[Guest guest]

How about a religious exemption? I don't know where you live, but in Georgia

they're not even allowed to ask what you're religion is.

Sissi

[Guest guest]

> Amie Lehman wrote:

>

> > Has anyone else, thought it was genetic. Do any of you

> > have history of autism in your backgrounds? Amie

I have one brother and three sisters. Two of my sisters, my brother and

myself -- each have at least one child on the spectrum. I'm starting to

suspect I have two.

We had an uncle on my mother's side who we now realize was autistic.

On the other hand, we have LOTS of immune system disorders in the family

too.

I know there's a genetic link and I suspect there's also an immune system

link. But the " cures " for immune-system autism don't work on my son.

Sissi Garvey

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[Guest guest]

when i first talked to my family doctor about there being something " wrong " with

rowan when he was about 15 months old he told me that " mom's can be so paranoid.

you read to many books. you are going to ruin your kids life looking for

something to be wrong with him " . arrogant, sexist, useless, prick ..... these

words spring to mind!

Re: Re: Question, may be controversial

I heard all these platitudes too and if the appoitments in this office

weren't scheduled 15 minutes apart (and I saw the actual doctor about 5

minutes of that time) then I would have definitely talked to him more

about it a long time ago. I just felt *I* was instinctually wrong. ;-/

~ Karin

The Hunny Family wrote:

>

> > About a year after her diagnosis at 6, I sent the service a letter

> > telling them that I wasn't casting any blame, but that they needed to

> > listen to their patient's mothers a bit more carefully. I also sent a

> > copy of her eval & dx. Needless to say, they never responded.

>

>

> I always WANTED to do that to the doctors who told me 'boys talk late',

> 'he'll talk when he's ready,' and 'let's see about getting YOU some

> counselling for your anxiety.'

>

> Good for you, Tina!

>

> Jacquie

>

>

>

[Guest guest]

In a message dated 9/23/2002 10:16:35 PM Eastern Standard Time,

Lehman_Amie@... writes:

> Has anyone else, thought it was genetic. Do any of you have history of

> autism in your backgrounds?

Hi Amie, yes and yes. My father has Asperger's traits and my second cousin's

son (on my father's side) has Asperger's. My father also has a first cousin

who had savant abilities. Pam