new to the group

[Guest guest]

> I know this is briefe and does not address everything or much at

> all, however I guess My wife and I are at our wits end right now and

> would like to ask where do we start?

>

> Who do we go to first, what do we try first, is there a good string

> of emails that address this already that I should look at first.

You might want to start by reading stories of recovery, so you can

learn what information is out there.

http://www.danasview.net/recover.htm

I have biomedical information here

http://www.danasview.net/parent3.htm

Dana

[Guest guest]

Yes, many of us have read " Evidence of Harm. " What a great book! There is

a group about such issues called " EOHarm " that you may be interested

in.

Pamela

" Courage is doing what you're afraid to do. There can be no courage unless

you're scared. "

Eddie Rickenbacker, top US fighter ace, WWI

_____

From: [mailto: ]

On Behalf Of Angelina

Sent: Thursday, July 13, 2006 12:49 PM

Subject: [ ] new to the group

hi i am new to the group and i have a four year old son who has

autism. He doesn't sleep and doesnt eat and doesnt say a word and i

have tried many different types of supplement crap that doctors have

given him plus b12 shots and nothing has worked on him so now i give

him nothing but pediasure, lactaid whole milk and he is on a sleeping

pill because nothing i do seems to help him at all he is also on a

stool softener so he can go to the bathroom. I would also like to ask

if anyone has read a book called Evidence of Harm: Mercury in Vaccines

and the Autism Epidemic: A Medical Controversy by Kirby because

what i have read about it so far in very upsetting and distrubing and

makes me very angry. So if anyone has any answers for me please let me

know. thank you.

[Guest guest]

Welcome to the list. Yes, many of us have read evidence of harm. Consider

getting a DDI hair elements test for your son. Also consider avoiding any more

vaccines. Other books on this topic include " A Shot in the Dark " by Barbara Loe

Fisher about the DPT, and " What Your Doctor May NOT Tell You About Childhood

Vaccines " by Dr. Cave. Have you tried or considered the gfcf diet?

Did your son get early intervention, is he getting preschool services? What

about speech therapy? How long ago was he diagnosed?

S S

<p>hi i am new to the group and i have a four year old son who has

<br>

autism. He doesn't sleep and doesnt eat and doesnt say a word and i <br>

have tried many different types of supplement crap that doctors have <br>

given him plus b12 shots and nothing has worked on him so now i give <br>

him nothing but pediasure, lactaid whole milk and he is on a sleeping <br>

pill because nothing i do seems to help him at all he is also on a <br>

stool softener so he can go to the bathroom. I would also like to ask <br>

if anyone has read a book called Evidence of Harm: Mercury in Vaccines <br>

and the Autism Epidemic: A Medical Controversy by Kirby because <br>

what i have read about it so far in very upsetting and distrubing and <br>

makes me very angry. So if anyone has any answers for me please let me <br>

know. thank you.<br>

<br>

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

[Guest guest]

I feel your anger. I cried a lot through that book.

Please do not get discouraged. Read the files here and consider

getting a hair elements test for your son as suggested. It was

the best money I have spent. Then I knew what toxins my son had and

what to do about them.

You mention constipation. A common problem for my son, have you

tried probiotics? And going casein free with his foods. My son no

longer eats any dairy, we use probiotics every day. This has helped.

Have you tried melatonin for sleep? We use this too and it works

without any side effects. Inability to sleep can be the result of

metal toxicity as well. There are supplements to help his brain make

the right hormones for sleeping.

I would likely guess that many questions will be answered with that

hair test. When you get the results post in on this board. Others

will interpret it for you and give some guidance.

If your son is toxic in metals on his hair test you can chelate him.

Removing the metals from his body and brain may help him. Metals

interfer with every body and brain function. Constipation is a sign

of heavy metal toxicity. This was the first symtpom that led me to

question my son's health..not to mention the abnormal development.

Read the files section and learn as much as you can on Andy Culter's

chelation protocol, and supplements for ASD kids. Post the hair

test. Read a lot...and don't give up!!

>

> hi i am new to the group and i have a four year old son who has

> autism. He doesn't sleep and doesnt eat and doesnt say a word and

i

> have tried many different types of supplement crap that doctors

have

> given him plus b12 shots and nothing has worked on him so now i

give

> him nothing but pediasure, lactaid whole milk and he is on a

sleeping

> pill because nothing i do seems to help him at all he is also on a

> stool softener so he can go to the bathroom. I would also like to

ask

> if anyone has read a book called Evidence of Harm: Mercury in

Vaccines

> and the Autism Epidemic: A Medical Controversy by Kirby

because

> what i have read about it so far in very upsetting and distrubing

and

> makes me very angry. So if anyone has any answers for me please

let me

> know. thank you.

>

[Guest guest]

>

> hi i am new to the group and i have a four year old son who has

> autism. He doesn't sleep and doesnt eat and doesnt say a word and i

> have tried many different types of supplement crap that doctors have

> given him plus b12 shots and nothing has worked on him so now i give

> him nothing but pediasure, lactaid whole milk and he is on a sleeping

> pill because nothing i do seems to help him at all he is also on a

> stool softener so he can go to the bathroom.

The sleep and constipation problems can be food related. Have you

considered digestive enzymes?

http://www.enzymestuff.com/

Here is constipation info

http://www.danasview.net/constip.htm

Sleep issues are commonly caused by food intolerance [especially

milk], phenol intolerance, and/or yeast overgrowth

http://www.danasview.net/phenol.htm

http://www.danasview.net/yeast.htm

Enzymes can help with both. I used HNI enzymes with much success

http://www.houstonni.com/

The book Evidence of Harm is a good book. You might consider finding

a Rescue Angel in your area

http://www.generationrescue.org/

Dana

[Guest guest]

Hi and Welcome. First things first, you cannot say you're sorry for

anything in this group.

Secondly, you should probably pursue an evaluation for your son. You could

check into doing it through the public school system, but you might be better

off doing it privately. Talk to you pediatrician about a referral to a

developmental pediatrician or neuropsychologist who has experience in the

autism

spectrum. There are supports/therapies out there that can help you and your

son. This article might help as you are homeschooling him. Please ask

questions. We are a full service group, with lots of experience and support to

give. There are also some families on list who are homeschooling...I'm sure

they will share their experiences. Pam

_Asperger Syndrome: Guide for Teachers_

(http://www.udel.edu/bkirby/asperger/teachers_guide.html)

This one is about homeschooling a child with special needs

_HSC - Homeschooling with Special Challenges_

(http://www.hsc.org/chaos/specialchallenges/)

[Guest guest]

Hello hello! I understand the tears,,, I have been there! Somedays I

go right back, too.

We are constantly faced by 'jerks' that think they know everything

about our kids and we must be wrong. It can be really frustrating.

My kids haven't fit in with their own age peers and have gotten the

negative comments, too.

The problem is, I see what they are doing, and it is only on

occasion do they actually act in a way that is so developmentally

delayed.

I would look to his pediatrician to see if he will refer you for a

Neuropsych or something in that league. You will want to check your

insurance. My insured paid all except for the educational testing.

That was 300.00

I know that is important too, so it depends on $$$.

They paid because of the 'behaviors' and we were looking for a clear

diagnosis.

Also, a good talk with your little guy would be good.

In My Opinion, talking about " why some kids are so mean. why would

they do things like that? DO you think maybe they don't understand

other kids sometimes? "

Sort of a way to help him come to terms with kids that may be really

rude to him. My now 13 year old used to be in tears when kids were

mean (and just plain rude) and now he says he doesn't care. I think

our talks helped a lot.

Who knows, but just a thought!!

Remember, you are not alone. Even if people around you make you feel

that way~

*smiles*

lisa B

>

> Hello,

>

> This is my very first post and I am crying as I write it. My son

> has not been officially diagnosed with Asperger's, but I have

known

> for a long time that something is wrong, but I'm not sure how to

> deal with it. My son is 9 and has always been homeschooled. When

> people ask why I homeschool I am quite vague but it is basically

b/c

> he doesn't do well in big groups esp. around children. He wants

to

> be a part of the group but he gets overwhelmed. This past year

has

> been a draining one for the whole family. He started out in

Karate

> and cub scouts (2 years ago). Karate has been good, but cub

scouts

> has gone down hill. He used to be so excited to go and would jump

> in " whole hog " but he has never felt like a part of the group.

The

> older he gets the more he realizes this and it is breaking my

heart.

>

> Today we went to Burger King to meet with a new homeschool group.

> He kept running up to the table saying, " That kid just called me a

> loser! " This is typical of most of our social interactions for

the

> past year. I have gotten to the point where I just want to become

a

> hermit. I began searching the web a while back and came upon a

> definition of Asperger's. He seems to fit a lot of the traits.

My

> question to all of you now is where should I go from here. I am

> sorry for such a long, rambling post, but I am at my wit's end.

> Thank you in advance.

>

[Guest guest]

Hi Lenore,

Welcome to the group. I am so sorry to read that you lost your dh. This is a

great group with loads of support and advice.

Beck

( ) new to the group

i just wanted to say hi. this is a year for new adventures. my dh passed away

in march and i have 2 boys 2 raise. my 13 yo was dx'd hfa in july. i'm hoping

that i may learn from the group and be able to get some answers when i need

them. bye for now Lenore w.

---------------------------------

How low will we go? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

Welcome! I hope we can all be a support for you.

I bet you will find lots to learn from everyone!

>

> i just wanted to say hi. this is a year for new adventures. my dh

passed away in march and i have 2 boys 2 raise. my 13 yo was dx'd

hfa in july. i'm hoping that i may learn from the group and be able

to get some answers when i need them. bye for now Lenore w.

>

>

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

> How low will we go? Check out Messenger's low PC-to-Phone

call rates.

>

>

[Guest guest]

There is a great book " Enzymes for Autism and Related Desorders " I think that

is how it is called. And you can buy it here www.enzymestuff.com this is the

Autors web page and it is very informative.

Cecilia

---- trinahamer <trinahamer@...> wrote:

> Hello, I am looking for info on enzymes, are there any books I

> should order and what about info on the web. Where should I start

> looking to educate myself on this subject.

>

> My son is 10,non-verbal autism, and has the most horrible eating

> habits Carbs and red apples and he eats only the orange peel, he will

> drink water and that's it.

>

> Much thanks, Trina Hamer

>

> Anyone here from Maine?

>

>

>

>

>

[Guest guest]

>

> Hello, I am looking for info on enzymes, are there any books I

> should order and what about info on the web. Where should I start

> looking to educate myself on this subject.

This site is good

http://www.enzymestuff.com/

Dana

[Guest guest]

Hi Sally,

There are a number of us with older kids with AS on this list. My son,

, is 18 and just started college. I can relate to the bullying,

unfortunately. It happened at his public school, and it happened again a

year or two later at the private school we moved him to to escape it. We

only got resolution when we stormed in with the district case manager and

demanded it. (Should have done this earlier, I know.) But your son is

entitled to a bullly-free education, and the district is obligated to

provide it. This goes along with his right to a Free and Appropriate

Public Education, or FAPE.

I'm glad you've joined us, and look forward to getting to know you better.

Liz

> Hi,

>

> I just wanted to take a minute to introduce myself to the group. Our

> family is from the New Castle, PA area. I am the mom of a 14 year old

> boy who has just been diagnosed with Asperger's within the last year.

> He is just entering 9th grade this year, and has struggled for many

> years with social difficulties (among other difficulties). He was also

> born with a birth defect and has had an artifical leg since he was 22

> months old. This, his social awkwardness and his high intelligence has

> made him a target for bullies for several years.

>

> He has had diagnoses in the past ranging anywhere from ADHD to

> BiPolar. He also suffers with Trichitollimania (compulsive hair

> pulling).

>

> I am hoping that this group will help me learn about asperger's and

> also help me through the day to day struggles that all of us go

> through.

>

>

>

>

>

[Guest guest]

I have been fighting the bully battle for over two years now. It's

funny, but my son is the one who was always in trouble because he is

the one that had the melt downs or became physical. I am

documenting every incident this year no matter how trivial and call

his emotional support teacher and tell her what happened.

I also have questions on where to turn for support, advocacy with

the school, and answers to questions like where, and what do we do

now that he has this diagnosis. I have twice had him tested

independantly for OT (he has some major sensory issues) and have

been turned down twice by insurance for any therapy. His

psychiatrist disagrees with the psychologist in his diagnosis.

The teachers get frustrated with him because they say he is so

smart, they should not have to tell him things over and over again.

(Like write your assignment down, sit down, don't talk out, etc.)

He is on his own this year without a wrap around, or any therapy.

Our psychologist no longer accepts my insurance, so I am in the

process of looking for a new one. Oh yeah, did I mention that he

also has Trichotillomania (compulsive hair pulling) and has an

artifical leg due to a birth defect. Just gives the kids more to

tease him about.

Sorry for rambling, and thanks for listening....

Sally

>

> Hi Sally,

>

> There are a number of us with older kids with AS on this list. My

son,

> , is 18 and just started college. I can relate to the

bullying,

> unfortunately. It happened at his public school, and it happened

again a

> year or two later at the private school we moved him to to escape

it. We

> only got resolution when we stormed in with the district case

manager and

> demanded it. (Should have done this earlier, I know.) But your son

is

> entitled to a bullly-free education, and the district is obligated

to

> provide it. This goes along with his right to a Free and

Appropriate

> Public Education, or FAPE.

>

> I'm glad you've joined us, and look forward to getting to know you

better.

>

> Liz

>

> > Hi,

> >

> > I just wanted to take a minute to introduce myself to the group.

Our

> > family is from the New Castle, PA area. I am the mom of a 14

year old

> > boy who has just been diagnosed with Asperger's within the last

year.

> > He is just entering 9th grade this year, and has struggled for

many

> > years with social difficulties (among other difficulties). He

was also

> > born with a birth defect and has had an artifical leg since he

was 22

> > months old. This, his social awkwardness and his high

intelligence has

> > made him a target for bullies for several years.

> >

> > He has had diagnoses in the past ranging anywhere from ADHD to

> > BiPolar. He also suffers with Trichitollimania (compulsive hair

> > pulling).

> >

> > I am hoping that this group will help me learn about asperger's

and

> > also help me through the day to day struggles that all of us go

> > through.

> >

> >

> >

> >

> >

>

[Guest guest]

I used to live in Yardley! Loved it! Gorgeous area. Ok, carry on w/

your regularly scheduled thread. lol!

~

> > Hello all, this is , mom to age 11 and she also has AS.

> This is our first time writing to the group. We are from

> Pennsylvania.

> >

> > is exactly the same about food. She will only eat certain

> cheeses or pizza from a certain place. It is really difficult to

> feed her at restaurants and even with family, though they understand

> and don't mind fixing her something she likes.

> >

> > Hope to hear more about everyone soon.

>

>

> Hi ,

> Welcome to the group. I'm from PA too. What part of PA are you from,

> if you don't mind saying? I'm in the Philly suburbs.

>

> Kathy

>

>

>

[Guest guest]

Sally where are you located? If you had outside OT evaluationcompleted that

warrants therapy and it is educationally founded, you need to present the

outside evaluation to your IEP team. If they refuse the service, get their

refusal in writing. I will again refer to Unlocking the Puzzle which is a

great

resource for teachers and others working with an Asperger's child. _Welcome

to Unlocking the Puzzle!_ (http://aspergertips.com/pageONE.html) You also

need to look into Medicaid funding in your state. Pam

[Guest guest]

Maybe you should suggest an autism consultant come in to do an observation

or perhaps request an FBA (Functional Behavior Assessment). If your child is

exhibiting those behaviors they have a function. If it isn't sensory based,

then the school is responsible to find out why and how he/she can be helped

in the school environment. Pam

[Guest guest]

>I am located in Lawrence County, Pennsylvania. I did show the

evaluation to the IEP team. They also had the IU come in (last

year) and do an eval. The IU said there were no sensory issues.

(1st time he was observed was during an in school suspension and

while taking a test.) If he has no sensory issues, why does he pull

his hair out, chew on his clothes, sharpen his pencil 15 times

during class, fall out of his chair, etc., etc.) I have an IEP

meeting coming up in a few weeks, I will take this latest eval to

the meeting and ask again.

I do have medicaid through the PA loophole, it was the medicaid that

denied the service stating it was educational need, not medical. My

primary insurance has a clause stating they do not cover autism.

I will check out Unlocking the Puzzle.

Thanks,

Sally

> Sally where are you located? If you had outside OT

evaluationcompleted that

> warrants therapy and it is educationally founded, you need to

present the

> outside evaluation to your IEP team. If they refuse the service,

get their

> refusal in writing. I will again refer to Unlocking the Puzzle

which is a great

> resource for teachers and others working with an Asperger's

child. _Welcome

> to Unlocking the Puzzle!_

(http://aspergertips.com/pageONE.html) You also

> need to look into Medicaid funding in your state. Pam

>

>

>

[Guest guest]

Hi,

Looks like we are neighbors, I'm live right down 224 in Poland Ohio. I have

a 10 year old that was just diagnosed this past winter.

Suzanne

-- ( ) New to the Group

Hi,

I just wanted to take a minute to introduce myself to the group. Our

family is from the New Castle, PA area. I am the mom of a 14 year old

boy who has just been diagnosed with Asperger's within the last year.

He is just entering 9th grade this year, and has struggled for many

years with social difficulties (among other difficulties). He was also

born with a birth defect and has had an artifical leg since he was 22

months old. This, his social awkwardness and his high intelligence has

made him a target for bullies for several years.

He has had diagnoses in the past ranging anywhere from ADHD to

BiPolar. He also suffers with Trichitollimania (compulsive hair

pulling).

I am hoping that this group will help me learn about asperger's and

also help me through the day to day struggles that all of us go

through.

[Guest guest]

The developmental pediatrician we are currently seeing out of Akron's

Children's Hospital gave our son the diagnosis of Cerebral Encephalopathy

(with autistic manifistations) or something like that so the insurance would

cover the diagnosis. Seems to be a problem with a lot of insurance companies

-- Re: ( ) New to the Group

>I am located in Lawrence County, Pennsylvania. I did show the

evaluation to the IEP team. They also had the IU come in (last

year) and do an eval. The IU said there were no sensory issues.

(1st time he was observed was during an in school suspension and

while taking a test.) If he has no sensory issues, why does he pull

his hair out, chew on his clothes, sharpen his pencil 15 times

during class, fall out of his chair, etc., etc.) I have an IEP

meeting coming up in a few weeks, I will take this latest eval to

the meeting and ask again.

I do have medicaid through the PA loophole, it was the medicaid that

denied the service stating it was educational need, not medical. My

primary insurance has a clause stating they do not cover autism.

I will check out Unlocking the Puzzle.

Thanks,

Sally

> Sally where are you located? If you had outside OT

evaluationcompleted that

> warrants therapy and it is educationally founded, you need to

present the

> outside evaluation to your IEP team. If they refuse the service,

get their

> refusal in writing. I will again refer to Unlocking the Puzzle

which is a great

> resource for teachers and others working with an Asperger's

child. _Welcome

> to Unlocking the Puzzle!_

(http://aspergertips.com/pageONE.html) You also

> need to look into Medicaid funding in your state. Pam

>

>

>

[Guest guest]

I had a neuropsychologist make the diagnosis. Pam

[Guest guest]

I agree, it is very hard. I have a 6 yr old son with AS and it is hard when my

friend's sons are diving and doing the backstroke on the swim team or doing

backflips on the trampoline in gymnastics. My son doesn't find the bike to be

very enjoyable because of his balance issues and I still help him to get

dressed. Every year you will see progress with the developmental delays, some

faster than others. You will be amazed at some of the things that can be

accomplished with therapy and the right attitude.

I just keep trying to explore and expose my son to a variety of things so he can

find what he is good at and what makes him happy. I also have to remind myself

that my son is a good, sweet, loyal person that I really like, so I am sure

others will too. I think the hardest thing for me is anticipating kids being

mean to him. I want to protect him from that so much, but I can't always be

there so I am working on giving him strategies, coping skills, and sending him

to social skills groups. It is hard on the pocketbook though. I am now

coloring my hair from a box and I put that $ toward my son. I think its $ well

spent. Keep reaching out to this group and take one day at a time.

Debbie Melamed

( ) new to the group

I am new to this group and just wanted to introduce myself. My name

is and I have a 5 year old son with Asperger's (just

diagnosed) and a 19 month old. Sometimes I feel so overwhelmed and

hope that I can learn from others in the same situations. We're still

working on potty training, educating family members who think that

he's just misbehaving, and dealing with developmental delays. It's so

hard to see your child struggling with something that comes so easily

to others, be it potty training, bike riding or getting dressed. I am

glad groups like this exist so people like me don't feel so alone.

[Guest guest]

Hiya , I am fairly new to the group too and haven't really

introduced myself. My name is Asha and I have 2 boys- Harvey is 4 and

has AS, OBD, auditory and severe behavioural problems and poss

ADHD/conduct disorder and Kai who is three. He has in-toeing and

epilepsy andfor a time we thought he may have AS but it seems more

likely to be ADD.

I live in Bedfordshire and look forward to getting to know you all,

Asha , Al, Harvey and Kai x

[Guest guest]

That is the part I struggle with the most too. I worry so much about kids being

mean to my son. He is however in a very good school with a zero tolerance

policy for that sort of behavior, but who can be around ALL the time to watch

what happens between the kids?

Melamed <melamedj@...> wrote: I agree, it is very hard.

I have a 6 yr old son with AS and it is hard when my friend's sons are diving

and doing the backstroke on the swim team or doing backflips on the trampoline

in gymnastics. My son doesn't find the bike to be very enjoyable because of his

balance issues and I still help him to get dressed. Every year you will see

progress with the developmental delays, some faster than others. You will be

amazed at some of the things that can be accomplished with therapy and the right

attitude.

I just keep trying to explore and expose my son to a variety of things so he can

find what he is good at and what makes him happy. I also have to remind myself

that my son is a good, sweet, loyal person that I really like, so I am sure

others will too. I think the hardest thing for me is anticipating kids being

mean to him. I want to protect him from that so much, but I can't always be

there so I am working on giving him strategies, coping skills, and sending him

to social skills groups. It is hard on the pocketbook though. I am now coloring

my hair from a box and I put that $ toward my son. I think its $ well spent.

Keep reaching out to this group and take one day at a time.

Debbie Melamed

( ) new to the group

I am new to this group and just wanted to introduce myself. My name

is and I have a 5 year old son with Asperger's (just

diagnosed) and a 19 month old. Sometimes I feel so overwhelmed and

hope that I can learn from others in the same situations. We're still

working on potty training, educating family members who think that

he's just misbehaving, and dealing with developmental delays. It's so

hard to see your child struggling with something that comes so easily

to others, be it potty training, bike riding or getting dressed. I am

glad groups like this exist so people like me don't feel so alone.

[Guest guest]

Hi,

I'm new to the group too. My name is Sara and I have 6 and 4 year old

sons and a 2 year old daughter. My 6 year old Sam hasn't formally

been diagnosed with AS, but both his teacher and social worker at his

school have talked to me about getting him evaluated. I have known

for some time that something isn't right. He just doesn't seem to fit

in socially with his peers and seems to get really depressed at the

fact that he doesn't make friends easily. I guess, lucky for him he is

great at any sort of electronic game and that has helped brings kids

to our house to play. He is such a neat kid and it breaks my heart,

like it does all of you for your kids, that he feels like an oddball.

I am so thankful though that he has a really great teacher this year,

one who previous to teaching 1st grade, taught special ed for 14 years.

I'm sure that I am going to be on here alot. Even though I had a

feeling about it, it's still really hard.

[Guest guest]

Hi Nikki, welcome to the group~

I'm new myself but have gotten some good advice and some great

support already. Hope you find the same experience!

>

> Hello everyone! I'm new to the group, just wanted to say hi and

give a

> quick intro.

> I'm Nikki, 31, married and living in a small college town in Ohio.

I

> have 3 boys--- (12), Trevor (10) and (9). Trev was

finally

> diagnosed this July with Asperger's. While it wasn't a huge

surprise

> (he's always been my quirky boy), it was an adjustment for us, in

> terms of finally being able to get the school to recognize

> his " quirks " and work with them, etc. Plus, he's heading into

> his 'tween years and I'm a little nervous as to how to handle some

of

> the situations that arise with this stage and Asperger's.

> At any rate, I'm looking forward to getting to know everyone and

> learning more about all of you

> Nikki

>