Intro

July 26, 2001

welcome sarah, feel freee to write whenever you feel like it, and write

whatever you feel is good to share with us. Cheryl

Intro

Hello. My name is and my daughter is 10 1/2. We both have

AS (she was officially dx'd 3 years ago and my dx came by way of her

dx). I homeschool her--we are entering our 2nd year just now. Since

the diagnoses, I have been active with a few email lists concerning

AS/ASD. But now we are moving into a whole new realm of diagnostic

testing, special diets, etc. and I feel I need to branch out and get the

perspectives of others. Since her dx 3 years ago, we have not gone the

route of specialists, therapy, diet, etc. But, after having her home

last year 24/7 in a homeschool setting, I began to get a glimpse into

her daily struggles with academics that I had not seen before. As I

reviewed her work a few months ago, it became very apparent that she is

struggling with some kind of processing disorder. So, we are meeting

with several specialists between now and August to run tests (DAN!

Doctor, Audiologist, Vision Therapist, Neur-Pych, and mood Bell).

I hope to get a clearer picture of her needs, and from that, be able to

teach to her level and learning style. I am sure I left out more about

us than I actually revealed here, but that's not intentional. It's just

hard to know what to say. I look forward to getting to know the members

in this group and becoming an active participant.

Peace,

July 26, 2001

Welcome

It is good to have you on the list. This is a great place to share

thoughts and experiences.

Tracey

Groseclose wrote:

> Hello. My name is and my daughter is 10 1/2. We both

> have

> AS (she was officially dx'd 3 years ago and my dx came by way of her

> dx). I homeschool her--we are entering our 2nd year just now. Since

> the diagnoses, I have been active with a few email lists concerning

> AS/ASD. But now we are moving into a whole new realm of diagnostic

> testing, special diets, etc. and I feel I need to branch out and get

> the

> perspectives of others. Since her dx 3 years ago, we have not gone

> the

> route of specialists, therapy, diet, etc. But, after having her home

> last year 24/7 in a homeschool setting, I began to get a glimpse into

> her daily struggles with academics that I had not seen before. As I

> reviewed her work a few months ago, it became very apparent that she

> is

> struggling with some kind of processing disorder. So, we are meeting

> with several specialists between now and August to run tests (DAN!

> Doctor, Audiologist, Vision Therapist, Neur-Pych, and mood Bell).

>

> I hope to get a clearer picture of her needs, and from that, be able

> to

> teach to her level and learning style. I am sure I left out more

> about

> us than I actually revealed here, but that's not intentional. It's

> just

> hard to know what to say. I look forward to getting to know the

> members

> in this group and becoming an active participant.

> Peace,

>

July 26, 2001

Hi - This is such a great list I know you'll find alot of help

and support here. I'm Deanna and my girls are Bridget 5.5 and

autistic and 2.4 and not. This will be our first year

homeschooling. Bridget was in ECSE preschool for one year and that

has been a great experience. We are really excited to start our new

adventure in home education. Welcome,

Deanna

> Hello. My name is and my daughter is 10 1/2. We both

have

> AS (she was officially dx'd 3 years ago and my dx came by way of her

> dx). I homeschool her--we are entering our 2nd year just now.

Since

> the diagnoses, I have been active with a few email lists concerning

> AS/ASD. But now we are moving into a whole new realm of diagnostic

> testing, special diets, etc. and I feel I need to branch out and

get the

> perspectives of others. Since her dx 3 years ago, we have not gone

the

> route of specialists, therapy, diet, etc. But, after having her

home

> last year 24/7 in a homeschool setting, I began to get a glimpse

into

> her daily struggles with academics that I had not seen before. As I

> reviewed her work a few months ago, it became very apparent that

she is

> struggling with some kind of processing disorder. So, we are

meeting

> with several specialists between now and August to run tests (DAN!

> Doctor, Audiologist, Vision Therapist, Neur-Pych, and mood

Bell).

> I hope to get a clearer picture of her needs, and from that, be

able to

> teach to her level and learning style. I am sure I left out more

about

> us than I actually revealed here, but that's not intentional. It's

just

> hard to know what to say. I look forward to getting to know the

members

> in this group and becoming an active participant.

> Peace,

>

August 27, 2002

Hi Donelle

Welcome to the group. My name is Tracey and we have two daughters. Our

oldest is Coral and she is 12 and our youngest, Skylar, will be 10 in

October and she was diagnosed autistic at the age of 3. We live in

Ontario, Canada. This is a great list full of support and ideas. Glad

to have you with us.

Tracey

Donelle wrote:

>

> Just a brief intro-

>

> I just joined your group. My name is Donelle. I have two daughters.

> One is almost 9 and NT. The other is 7.5 y.o. and HFA. I live in San

> Diego area. I'm looking forward to chating with other mothers of

> autistic girls.

>

> Donelle

>

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

>

August 27, 2002

Welcome aboard Donelle. I have 3 kids two are autistic. My daughter

acts totally oposite then my son. Both are autistic. is age 9

and is 4 1/2. I have heard that California takes care of there

special education. Charlene

-- Intro

Just a brief intro-

I just joined your group. My name is Donelle. I have two daughters. One is

almost 9 and NT. The other is 7.5 y.o. and HFA. I live in San Diego area. I

m looking forward to chating with other mothers of autistic girls.

Donelle

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

August 28, 2002

is mainstreamed, but does get pulled out for speech and adaptive PE. She

gets OT as well, but she sees at day-care instead of pulling her out. So

far, my only complaint is that the maistream teachers are not trained in autism.

Donelle

cheezer wrote: Welcome aboard Donelle. I have 3 kids two are autistic.

My daughter

acts totally oposite then my son. Both are autistic. is age 9

and is 4 1/2. I have heard that California takes care of there

special education. Charlene

-- Intro

Just a brief intro-

I just joined your group. My name is Donelle. I have two daughters. One is

almost 9 and NT. The other is 7.5 y.o. and HFA. I live in San Diego area. I

m looking forward to chating with other mothers of autistic girls.

Donelle

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

August 28, 2002

Same thing here, her teacher and aide understand the situation, but the

other teachers sure don’t. so I have a video now, that I have given the

aide, and she tells me she is going to get the other teachers to watch

it, so they are better informed, I just hope they do, and don’t treat it

all as a joke. Cheryl S

Intro

Just a brief intro-

I just joined your group. My name is Donelle. I have two daughters. One

is almost 9 and NT. The other is 7.5 y.o. and HFA. I live in San Diego

area. I m looking forward to chating with other mothers of autistic

girls.

Donelle

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

August 28, 2002

I spent an hour with the teacher yesterday and gave her a copy of " Autism

Through a Sister's Eyes " to get her started on understanding some of 's

quirks. I also got her e-mail address so I can send some links. What video do

you use? Where did you get it?

Donelle

Mark Sommerfeld wrote:Same thing here, her teacher and aide understand the

situation, but the

other teachers sure don’t. so I have a video now, that I have given the

aide, and she tells me she is going to get the other teachers to watch

it, so they are better informed, I just hope they do, and don’t treat it

all as a joke. Cheryl S

Intro

Just a brief intro-

I just joined your group. My name is Donelle. I have two daughters. One

is almost 9 and NT. The other is 7.5 y.o. and HFA. I live in San Diego

area. I m looking forward to chating with other mothers of autistic

girls.

Donelle

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

August 24, 2003

Hi Kim,

I think you will find this group very encouraging. I know you know my daughter

Rochelle. We went to early intervention together. There are more children being

dual dx'd and you will find you are not alone even in our county. I just wanted

to let you know it is a little slow on weekends and in the summer. This group is

really good at brain storming and helpful suggestions for problem behavior.

Hugs

Diane (mom to Rochelle-7 ds/asd/celiac and Danny-9 ld/asd/ocd)

>

> From: " Kim & Bernardo Amenabar " <kbamenabar@...>

> Date: 2003/08/24 Sun AM 12:16:21 EDT

> < >

> Subject: Intro

>

August 24, 2003

Hi Kim,

Welcome aboard. Your post is something that I can relate to as well

as many here on the list. These are the same feelings that most of

us battle when we we see our child not like others and this list is

just wonderful sharing or looking for a way with the trials, errors

medically, educational, or home issues and this to me has been a

great comfort knowing that I'm not alone and has open doors for my

15 y/o son.

This is a challenge when raising a child with difficult issues. Not

an easy journey not knowing some areas that are triggering the

bizarre behaviors.

I hear you, as you are a busy professional such as yourself and this

is a new arena which would require taking time to help your child.

You are no failure on this area, no feeling sorry just some HOPE!

On what you wrote with the repetitive behavior. " At this point he

has only about 5 words that he still uses (out of over 50 before).

He rarely makes eye contact.

" obsessed with long objects(sticks, poles, pieces of wood, rulers)

or watches endless tapes of Sesame Street or Teletubbies. He rarely

responds to his name or any commands or questions. It's so hard to

reach him " .

He can be taught its just going to figure which teaching techniques

that adress his needs. Maybe not to the point where he can be like

other Down's but at least to some comfort that he can be taught some

difficult areas that our kids can not process as others and this

cuts down some frustration and learn some independent skills of

belonging.

My son is achieving many wonderful gains with ABA/VB, visual

support, & sensory integration. He started out with limited language

as he did not know them without being prompted or he would not know

how to use his words. The items he is obsessed with are great

reinforcements. Its still a journey but its a relief to understand

and address my son's needs and you will do the same for ,

once you researched and apply the teaching techniques that will work

for him.

Sites I wish to share which has been worth a look has resources:

ABA, links & training, very informative with great ideas on

educating children with autism, its just knowing how to modify

around our children where it will not be hard, confusing, etc. -

http://www.kathyandcalvin.com/

Click under Autism & ABA

www.MariposaSchool.org

Example- " Dealing With Behaviors Before They Happen " , etc.

A great understanding site on possiblities of why our child react

they way they do which helped me to learn when my son has a bizarre

behavior. Plus it was great opportunity to listen to her at an

Autism conference as well as many other great professionals.

http://www.autism.org/temple/visual.html

My Experiences with Visual thinking Sensory Problems and

Communication Difficulties by Temple Grandin, Ph. D.

Check out the files and links on the left hand sign of our list to

see if there is anything that might help.

Hope something helps as I do understand every individual are unique

and I just wanted to give you some hope and never give up. We all

need a shoulder to lean on and this list has become an amazing cyber

family, not just anyone out on the other side of not understanding.

Welcome aboard.

Irma,15,DS/ASD

http://www.theraceschool.org/aba/dictionary.htm

August 24, 2003

In a message dated 8/24/03 7:55:59 AM Central Daylight Time,

writes:

> . I guess I'm feeling sorry for myself when I should really be focusing on

> him but sometimes I just can't see any light at all at the end of the

> tunnel. I hear about all these wonderful things happening for people with DS,

> going to college, living independently, self-advocacy and I can't imagine any

of

> that for . It's hard to imagine him even feeding himself.

>

> I'm not really sure why it's all getting to me so much lately but it is. So

> I'm hoping some of you can understand and not be offended by my anger and

> despair right now. I don't know who else could understand without giving me

> pity and THAT I don't want.

>

> Thank you for giving people like me a place to fit in.

>

> Kim Amenabar

> mom to Klaudia (9) and (6)

>

Hi Kim,

I certainly don't begrudge anyone some anger and despair. Being the last week

before school starts here I'm tired and feeling some of that despair.

Welcome to the group and we will all cheer with all our might when

feeds himself. It will happen.

Karyn

August 24, 2003

Hi Kim,

Welcome to the list. My son is 5 1/2 and also began losing much of his

speech at around " 3 " . He had quite a bit too!!! I will say, don't give up

on . Tim has regained some of his speech though not nearly what

it was and at times it is like pulling teeth but he is at least verbalizing

some of his needs (mostly food and drink). My son was diagnosed in May of

2002 (May 16th to be exact...I won't ever forget the date!). I was in deep

despair and not able to do a thing about the ASD until this past

spring/summer......I too, had thought I had just gotten a lot of the DS

down pat and then was thrown into the world of ASD and didn't want to be

there!!!:) Give yourself the time to despair and be angry. My son loves

Barney, the Wiggles and Blue's Clues. You are lucky that is into

Sesame. I think that there is a lot more that can be learned from it than

most of the others and he is probably taking in a lot more than what you

realize. I have found much support from a couple of other mom's that have

children with ASD in the school district. I still have my DS local support

group but I usually only attend functions with the other Moms. There is a

huge difference in my son and the other children with just DS when we get

them together. Take heart that there are others of us out there!!!! Good

Luck and keep us posted on your " journey " !!!

H.

At 12:16 AM 8/24/03 -0400, you wrote:

>I'm new to your group although not new to Ds or PDD. My son, is

>6 but was formally diagnosed with PDD almost 2 years ago. It's just taken

>me awhile to realize that I do need some support but I just don't fit in

>with the parents whose kids just have one or the other . It seems like no

>one has a child like my son or at least I've never seen anyone like him

>and I've been a teacher for over 11 years.

>

> started losing speech at around 3 years old, although he did

>have some repetitive behaviors and arm & leg flapping beginning around 18

>months that were the first tip offs to the autism. At this point he has

>only about 5 words that he still uses (out of over 50 before). He rarely

>makes eye contact. He wanders around the house obsessed with long

>objects(sticks, poles, pieces of wood, rulers) or watches endless tapes of

>Sesame Street or Teletubbies. He rarely responds to his name or any

>commands or questions. It's so hard to reach him. Just when I came to

>grips with the Down syndrome and was feeling like we could have a " normal "

>life, started slipping away. I guess I'm feeling sorry for

>myself when I should really be focusing on him but sometimes I just can't

>see any light at all at the end of the tunnel. I hear about all these

>wonderful things happening for people with DS, going to college, living

>independently, self-advocacy and I can't imagine any of that for

>. It's hard to imagine him even feeding himself.

>

>I'm not really sure why it's all getting to me so much lately but it

>is. So I'm hoping some of you can understand and not be offended by my

>anger and despair right now. I don't know who else could understand

>without giving me pity and THAT I don't want.

>

>Thank you for giving people like me a place to fit in.

>

>Kim Amenabar

>mom to Klaudia (9) and (6)

>

September 14, 2003

Hi Chuck

Welcome to the group. I'm newish too, having only been diagnosed a

couple of months, following weight loss, stomach pain, joint aches etc.

Glad to hear you responded well initially to the drugs. This group is

an invaluable source of info and support. There's even a 'get together'

in Vegas next w/e. Can't make it myself as it's a bit of a trek from

the UK, but you never know for next year!

Caroline 2

On Sunday, September 14, 2003, at 03:55 PM, Cornelius wrote:

> My name is Chuck Cornelius from Houston, Texas. I was Dx with Stills

> in October of 1991 at Stanford University. I was in the mist of a

> full blown , " text " book, version of stills, but unknown to my Family

> Doctor, the internist, and the infectious disease doctor. After

> nearly two months of testing, including a bone marrow biopsy, I was

> sent to the reumatologist who took one look and said " you have

> Stills. " I was then given the proper medication and a month later I

> was back to " normal. "

>

> Since 1991 I have had a few outbreaks, with mild affects. Since June

> 2003 I have been fighting another bout. Fevers, weight loss,

> muscle-joint pain, etc...I am on Plaquinel, Enbrel, Prednisone now. A

> side affect from the first bout is that my pancreas was damaged by the

> fevers, and spleen enlargement. Therefore, I was Dx with Type II

> diabetes two years ago. I now have to deal with Hyperglycemia (mild

> with diet) too. I should be able to go back to work soon, thank god!!

>

> Chuck Cornelius

> Houston, Texas

> pcornelius@...

> February 7th, 1966

>

September 14, 2003