Introduction

[Guest guest]

Hi Deborah and welcome:

It's good to see you here. I think you will find lots of support and

information; and most important, you will find folks who have stories much

like yours. When you can't find anyone who seems ot know much about a dual

diagnosis it is always good to hear there are others dealing with the same

situation.

Sometimes kid who we think have the dual diagnosis of ds/asd, turn out not

to once a decent evaluation is performed. I take the approach to this that

the label is not what is important. Reaching in to your cyhild's world,

especially whe you feel like you do not fit anywhere is what is important.

You belong here.

Andy was diagnosed with ASD around1997. He was about 9 years old at the

time. He is now 13. And while progress is slow, it is there. Most

importantly, by understanding how our child views the world a little

better, we have been able to support him better and he is much happier.

Where do you live? This group is extremely tenacious about trying to get

together. Perhaps someone lives nearby and you can at least make a phone

connection!

Well, I must go. My oldest is home from school.

WElcome!!

joan

At 12:43 PM 9/26/2002 -0700, you wrote:

>My name is Deborah and I am the mother of 10 children. Two of my children

>have Down Syndrome, one - - is also diagnosed with ASD.

>

> is 10 years old, possesses an incredible ability to open any lock, any

>time, any where. He enjoys the family pets - our four dogs. The cats do not

>enjoy him, neither does the guinea pig. Dogs will put up with anything from

>anybody who pays attention to them.

>

>He likes to be around people, not necessarily with them. His speech is

>limited to repeating, in a very soft voice, one or two words said to him.

>Prior to this year he did not speak at all.

>

> has three brothers - (13) who also has DS, (19), and

>(9). His six sisters are: (21), Johanna (17), Jill (15), Jenna (13)

>- his favorite, Torin (11), and Madeline (7).

>

>Madeline, and spend the most time with him. He likes to be

>around them, not necessarily with them. Madeline and get more

>cooperation out of him than anyone else.

>

>His favorite past-times are floating paper in front of fans, tossing

>anything out of 2nd story windows, hiding car keys, unlocking doors, rolling

>matchbox cars in box lids, and laying on top of the dogs. He is not terribly

>fond of shoes (as an apparel item). However, they hold great potential as

>toys and flying objects. The same can be said for shirts.

>

>I had my suspicions about for a few years now. This past year, his

>teacher and I both came to the conclusion at the same time that 's

>situation was complicated by his " autistic " behaviors. Chasing a diagnosis

>is difficult, especially when your child has a diagnosis the school system

>would rather address singularly. It is surprising how many people will tell

>you they have never heard of DS and ASD together, therefore, it must not

>exist. I attended a support group for parents of children with ASD Tuesday

>night. I was the only parent of a child with the dual diagnosis of DS and

>ASD.

>

>

>

>

>

[Guest guest]

In a message dated 9/26/02 12:45:06 PM Pacific Daylight Time,

dashriver@... writes:

<< My name is Deborah and I am the mother of 10 children. Two of my children

have Down Syndrome, one - - is also diagnosed with ASD.

is 10 years old, possesses an incredible ability to open any lock, any

time, any where. He enjoys the family pets - our four dogs. The cats do not

enjoy him, neither does the guinea pig. Dogs will put up with anything from

anybody who pays attention to them. >>

Welcome Deborah!

Great to have you with us. I'm sure you have lots of stuff to share with us.

You have quite the family. Are Jenna and twins? Are and

still home? Sounds like fits right in here! Hope we hear a lot from

you.

Gail :-)

Gail-Mom to Seth 6 ds/asd/pica, jo 10 the gymnast, 11 the

pianist, 25 beautiful but a pain, Jen 26 the wallet breaker, Grandma to

Errick 6 ALL boy and wife to , my hero.

[Guest guest]

Krilly,

There is a parent's group in Dallas/ Ft Worth called FEAT-NT, they are a

group of parents that are very knowledgeable about ABA. Also, they

periodically hold meetings and usually one big conference a year. They can

be a BIG resource for you in many ways.

Their website is http://www.featnt.org/ <http://www.featnt.org/> . (I am

the wemaster) Our next meeting is May 17th, 2003. Look for directions on

the meeting announcement on the website.

ABA is not very popular with most ISDs because it requires one-on-one. When

the ISD's talk about in-home training, USUALLY, they mean one hour a week

they will come to your home and help YOU learn skills to work with and

manage your child to reinforce what they are doing in school. They also

work with the child.

ABA focuses on working with the child intensively, usually one-on-one , in

the beginning , and with other children as the child progresses and needs

help with group social skills.

That doesn't mean you can't ask them to do ABA, with the in-home training

hours....you can ask, different ISD's embrace ABA differently, but in Texas,

most don't provide it without pulling teeth first.

Come to the next FEAT-NT meeting or locate other parents through your

nearest ASA group and that will be a good resource too. You should be able

to find some parents through ASA, also...... at

http://www.autism-society.org/ <http://www.autism-society.org/> look for

the Dallas chapter.

Hope this helps.

J. P. Reirdon

Webmaster

http://www.autismtreatment.info/ <http://www.autismtreatment.info/>

You CAN treat Autism!! Get treatment tips for children with Autism, PDD and

Aperger's Syndrome from parents who have successfully helped their children.

introduction

I am new to thid group and would just like to introduce myself. My

name is Krlly and I am 24 yrs old. My son was dx with mild autism

Dec 16th 2002 at The Child Study Center in Ft. Worth. He just turned

three in January. He is nonverbal but is a very loving child. Since

he turned three he is going to the public schools special preschool

program in Waxahachie, Texas where we live. We also do a gluten,

casein and soy free diet and we are doing vitamin and other

supplements. I can't say either way if any of these will fully help

but i like to give him a shot at any and every treatment. recently

we started participating in the study trial for secretin at the texas

center for autism research in san antonio. the reason i jo9ined this

group is i have no idea what i should ask for or expect my son to

receive through the school system or any other branch like dept. of

human services or mhmr. we are having another iep meeting tomorrow

so he can go year round in school and they have told me because of

his diagnosis he also qualifies for in home training and therapy. is

that different from aba? i would really love to get him set up to

recive aba but i have no idea how to do this. (please forgive my

ignorance) we have texas chips(amerigroup) as his insurance and im

not sure if they help pay for anything. where should i start. who

do i talk to - to find out where to get services. we live in ellis

county just south of dallas and no one out here seems to have any

groups. i know there has to be more of us around me but i havent

found anyone. help!!!!!!!

[Guest guest]

Welcome, Kathy!

You'll find lots of good information here since someone on this list has

probably had every possible complication. You'll get the " skinny " on any

question you ask.

Jim

Introduction

My name is Kathy, and I hail from Rockford Illinois, which is a suburb

of Chicago. I'm 39/Married. I've been fighting obesity just about all

my life, and my overall health is suffering- Joint problems etc. I've

made the decision to under go DS surgery. I was led to this group

from a hyperlink off another page which was anti- wls. I hope to gain

insight from the groups experiences with the DS sugery.

I am in the process of submitting insurance information to the Delano

group. If my insurance refuses me surgery (I hope not) I will

be private pay.

Kathy

[Guest guest]

On Wed, 23 Jul 2003 00:45:22 -0000, funon2whels wrote:

>My name is Kathy, and I hail from Rockford Illinois, which is a suburb

>of Chicago. I'm 39/Married. I've been fighting obesity just about all

>my life, and my overall health is suffering- Joint problems etc.

>I've made the decision to under go DS surgery. I was led to this group

>from a hyperlink off another page which was anti- wls. I hope to gain

>insight from the groups experiences with the DS sugery.

>I am in the process of submitting insurance information to the Delano

>group. If my insurance refuses me surgery (I hope not) I will

>be private pay.

>Kathy

>

>

Kathy,

You came to the right place. Ask anything you want, but be careful. Some

of the folks on these support groups have a twisted sense of humor, so the

answers may tend to get side-tracked.

You may also want to watch for postings signed by " from Wisconsin. "

She's a recent patient of Dr. keshishians and I think she's from Madison or

Janesville. Once you spot her message, you should be able to email her

privately with specific questions.

I'm originally from Sheboygan and we have close friends in Delavan and

Harvard, so I know the general area. Unless you like it HOT, try to

schedule your surgery outside the summer months. Delano in the summer gets

up to 110+ on some days. Think of Rockford at 85 with 90% humidity and you

get the idea of what that feels like.

Good luck with your insurance.

Jerry

[Guest guest]

JERRY, Sheboygan? Now I now how your e-mails sound --- LOL

Re: Introduction

On Wed, 23 Jul 2003 00:45:22 -0000, funon2whels wrote:

>My name is Kathy, and I hail from Rockford Illinois, which is a suburb

>of Chicago. I'm 39/Married. I've been fighting obesity just about all

>my life, and my overall health is suffering- Joint problems etc.

>I've made the decision to under go DS surgery. I was led to this group

>from a hyperlink off another page which was anti- wls. I hope to gain

>insight from the groups experiences with the DS sugery.

>I am in the process of submitting insurance information to the Delano

>group. If my insurance refuses me surgery (I hope not) I will

>be private pay.

>Kathy

>

>

Kathy,

You came to the right place. Ask anything you want, but be careful.

Some of the folks on these support groups have a twisted sense of humor,

so the answers may tend to get side-tracked.

You may also want to watch for postings signed by " from

Wisconsin. "

She's a recent patient of Dr. keshishians and I think she's from Madison

or Janesville. Once you spot her message, you should be able to email

her privately with specific questions.

I'm originally from Sheboygan and we have close friends in Delavan and

Harvard, so I know the general area. Unless you like it HOT, try to

schedule your surgery outside the summer months. Delano in the summer

gets up to 110+ on some days. Think of Rockford at 85 with 90% humidity

and you get the idea of what that feels like.

Good luck with your insurance.

Jerry

[Guest guest]

On Tue, 22 Jul 2003 17:53:23 -0700, Jim H wrote:

>You'll get the " skinny " on any

>question you ask.

>

>Jim

>

Kathy,

And Jim is one of our resident punsters and among the group you'll have to

watch. Ask him about the problem he had in Home Depot, Wal-Mart, and Dr.

K's elevator. You'd think he would learn about suspenders. LOL

Jerry

[Guest guest]

Hi Kathy,

I am from Madison, Wisconsin, so we are almost neighbors. I had my surgery

with Dr K on May 14th and I feel better today than before the surgery. You

sound very similar to me. This is a great place to ask questions - everyone

is very giving, helpful and funny.

Feel free to ask any quesitons especially about being an out of towner.

in Wisconsin

Down 48lbs and 1 lbs from being out of the 300's

Introduction

> My name is Kathy, and I hail from Rockford Illinois, which is a suburb

> of Chicago. I'm 39/Married. I've been fighting obesity just about all

> my life, and my overall health is suffering- Joint problems etc.

> I've made the decision to under go DS surgery. I was led to this group

> from a hyperlink off another page which was anti- wls. I hope to gain

> insight from the groups experiences with the DS sugery.

> I am in the process of submitting insurance information to the Delano

> group. If my insurance refuses me surgery (I hope not) I will

> be private pay.

> Kathy

>

>

>

>

>

[Guest guest]

On Wisconsin, JERRY and I LOVE Brats.

RE: Introduction

> On Tue, 22 Jul 2003 18:01:47 -0700, Jim H wrote:

>

> >JERRY, Sheboygan? Now I now how your e-mails sound --- LOL

> >

> If you ever want to talk about Bratwurst, you know how to call. Sheboygan

> county, home of ville Brats, not to mention all the other local

> brands, like Old Wisconsin. They even have a yearly festival and

Sheboygan

> is known as the Bratwurst Capital of the U.S.

>

> Jerry

>

>

>

>

[Guest guest]

>

> >You'll get the " skinny " on any

> >question you ask.

> >

> >Jim

> >

> Kathy,

>

> And Jim is one of our resident punsters and among the group you'll

have to

> watch. Ask him about the problem he had in Home Depot, Wal-Mart,

dont forget the nair incident!!!

vicki

[Guest guest]

Kathy

Welcome! Even though I am an aussie, I used to live in L.A and know lots of

people on the list...but Chicago is my absolute fav. city - lucky you!

You have made a good decision to chose the DS and Dr K. Please ask us anything

you want..we are pretty open.

Best wishes

Kristy in Australia

[Guest guest]

Welcome new groupie! It's a great bunch of people and some of us

(looks at Jim) are just a bit off *wink wink* and we wouldn't have it

any other way. The people on here are so full of information, love

and support. You came to the right place! We will laugh, and cry with

you if needed.

I am Katharine..A Hemodialysis Nurse, mother of a 13 yr old (for

another week unless she straightens up..Im gonna have to get a refund

on her if she doesn't LOL) and an 11 yr old son who's voice is so

funny to listen to (the change ) That's all I have time for LOL

I'm a pre-oper myself. So sometimes I ask stupid questions but

hey..we all need a good laugh from time to time

Katharine

> My name is Kathy, and I hail from Rockford Illinois, which is a

suburb

> of Chicago. I'm 39/Married. I've been fighting obesity just about

all

> my life, and my overall health is suffering- Joint problems etc.

> I've made the decision to under go DS surgery. I was led to this

group

> from a hyperlink off another page which was anti- wls. I hope to

gain

> insight from the groups experiences with the DS sugery.

> I am in the process of submitting insurance information to the

Delano

> group. If my insurance refuses me surgery (I hope not) I will

> be private pay.

> Kathy

[Guest guest]

> On Wisconsin, JERRY and I LOVE Brats.

GREAT! I have a couple Im willing to give away..maybe even pay you to

take! Oh man you aren't talking about kids. Shucks! *teehee*

Katharine

[Guest guest]

In a message dated 7/23/2003 10:15:23 AM Central Daylight Time,

sonofmosiah@... writes:

> Jim

> The innocent, little lamb.

>

>

After the nair incident, more like asheared lamb with big whelps...LOL.

in Bama

http://hometown.aol.com/mdl1031/myhomepage/profile.html

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

02/12-330.0 (minus 47.5 lbs)

05/12- 304.8 (minus 72.7 lbs)-BMI now 48

06/22- 290.8 (minus 86.7)BMI 46.

[Guest guest]

Now, Kathy, don't believe a word these women are telling you. They are a

bunch of sadistic, sex crazed, perverts. So, you just be careful what

you believe when they post.

I can't believe you'd bring up that NAIR incident, Vicki!!!! You ARE

sadistic!

Jim

The innocent, little lamb.

Re: Introduction

dont forget the nair incident!!!

vicki

[Guest guest]

Jim,

I am not sadistic. The rest I won't comment on....

in Bako

[Guest guest]

HAHAHAHAHA!! Who told you?? Have you been speaking to my man? LOL

Kat

> Now, Kathy, don't believe a word these women are telling you. They

are a

> bunch of sadistic, sex crazed, perverts. So, you just be careful

what

> you believe when they post.

>

> I can't believe you'd bring up that NAIR incident, Vicki!!!! You ARE

> sadistic!

>

> Jim

> The innocent, little lamb.

>

>

> Re: Introduction

>

>

> dont forget the nair incident!!!

>

> vicki

[Guest guest]

> Now, Kathy, don't believe a word these women are telling you. They

are a

> bunch of sadistic, sex crazed, perverts. So, you just be careful

what

> you believe when they post.

>

> I can't believe you'd bring up that NAIR incident, Vicki!!!! You

ARE

> sadistic!

>

> Jim

>

couldnt resist, darlin!!!!!!!!!!!! that one must be heard by all!!!

lol

vicki

[Guest guest]

> Jim,

>

> I am not sadistic. The rest I won't comment on....

>

> in Bako

>

>

>

[Guest guest]

Howdy all and ,

KD recieves ST and OT about twice a month each, and the ECI lady comes

usually twice a month. Last time I saw our ST I told her I wanted more sessions

for

him. With us being 90 mi from the biggest decent sized town, it's harder for

them. She told me if all else fails they could get the schools involved. I

don't exactly know who I would discuss it with at the ISD. Shoot when I was

pregnant with him I worried about who would tell me when it was time to enroll

him LOL. I'm not the brightest light on the tree... but none the less... KD

needs as much help as he can possibly get and I want it for him. I joined this

loop, in hope that someone in this area could serve as my mentor, as I learn

the " ropes " of who to talk to and about what. I appreciate all the emails and

welcome them with open arms.

Sincerely,

Valrie

[Guest guest]

Hi,

What you should ask for, kind of depends on what treatment therapies you are

doing, or intend to do. Talk to someone at the nearest ARC of Texas chapter

to you - http://www.thearcoftexas.org/Chapter%20Services/CSdir.html

<http://www.thearcoftexas.org/Chapter%20Services/CSdir.html> this is a

web page with a directory of ARC chapters out west. The ARC is a non-profit

group of Advocates. They are aware of the law and what your rights are.

They can advise you on how to get the treatment you want, but you need to

know what treatment you want to do.

http://www.autismndi.com/ <http://www.autismndi.com/> is a good website

for info about Dietary treatments.

http://www.cgiworker.com/danlist/danlist.html

<http://www.cgiworker.com/danlist/danlist.html> is a list of DAN doctors

(Defeat Autism Now) they are supposed to be current on the latest therapy

protocol for children with Autism.

and here are some sites I maintain about Autism

http://www.featnt.org/ <http://www.featnt.org/> is a parent's website

advocating early intervention, focusing on ABA.

http://www.AutismTreatment.info/ <http://www.AutismTreatment.info/> Talks

about ABA, Dietary treatment and other Bio-medical treatments

http://www.StarThrowers.org/ <http://www.StarThrowers.org/> Fundraising

for home treatment programs

I hope some of this helps.

J. P. Reirdon

Webmaster

<http://www.featnt.org/> http://www.featnt.org

" Building a Bridge of Hope "

Webmaster

<http://www.autismtreatment.info/> http://www.AutismTreatment.info/

You CAN treat Autism!!

Get treatment tips for children with Autism, PDD and Aperger's Syndrome from

parents who have successfully helped their children.

Webmaster

http://www.StarThrowers.org/ <http://www.starthrowers.org/>

Fundraising for In-Home treatment programs

Introduction

Hello all,

My name is Valrie. My son, KD, 28 mo old, has just been diagnosed

(yesterday) with severe autism. Right now I'm kinda at a loss as to what to

say. He

runs around the house, he doesn't usually hit himself or hurt himself. His

pain

threshold is fearfully high though. He, thank God, doesn't mind physical

contact in general. He's a climber, which is getting pretty rough on us.

We are

looking to find some financial help for his therapies, cfgf diet, and day

care. The dr said we needed to keep him around other kids as much as

possible,

for his language development. KD doesn't speak. Our insurance will not

cover

any of this. It specifically states that it will not cover anything to do

with developmental disorders except ADHD. I am in Stratford, TX. Up here

north

of Amarillo, about 90 mi. I'm practically in OK we're so far north LOL. If

anyone has anything they could share with me on getting him the help we need

for him I sure would appreciate it. Right now ECI is seeing him and he gets

to

see a therapist maybe once a week or so. I want him to get more but I don't

know exactly how much more I should ask for. I appreciate your time .

Sincerely,

Valrie

[Guest guest]

Hi Valrie,

I am sorry to hear about your son. I am in exactly the same boat as you are

with your son. My daughter is 28 months old. She has not been officially

diagnosed, becasue the Texas Children's Hospital can't see us until mid january,

but we are definitely in the " Autism Spectrum " . I am still struggling with

which direction to go and what best to do for my daughter. In the meantime i

came across the gfcf diet and decided to give it a shot - at least until we

could get in to see a doctor. We started the gfcf diet 3 1/2 weeks ago all on

our own just off of what we read on the internet. It has made quite a

difference in Hannah's social interaction and her overall awareness, not to

mention her " babbling " and word approximations have slowly started finding their

way back(at a slower pace than I would like, but progress is progress). I

highly recommend that you try it. The first thing I would do would be to go to

www.gfcfdiet.com . It has been a great source of information to us. Also, as

for ECI, we too have a speech therapist coming once a week to work with Hannah.

And, while she is a good sounding board for me I am not sure how much it is

helping. I have already been talking to ECI regarding the PPCD classes that

will start at age 3 once she " graduates " from ECI. I have heard really good

things about these classes. As for how much you should ask for with ECI....ask

away!!! What's the worst that could happen?!?! I totally feel for you and hope

that you can find things that work for you. I know I don't have that much good

info, but at least it's a start. I truly feel that we can beat this if we work

hard to find the right avenue of help for our children. Again, I highly

recommend that you give the gfcf diet a try - you might be amazed as to what

could come of it! Good luck!

brandee

Introduction

Hello all,

My name is Valrie. My son, KD, 28 mo old, has just been diagnosed

(yesterday) with severe autism. Right now I'm kinda at a loss as to what to

say. He

runs around the house, he doesn't usually hit himself or hurt himself. His

pain

threshold is fearfully high though. He, thank God, doesn't mind physical

contact in general. He's a climber, which is getting pretty rough on us. We

are

looking to find some financial help for his therapies, cfgf diet, and day

care. The dr said we needed to keep him around other kids as much as

possible,

for his language development. KD doesn't speak. Our insurance will not cover

any of this. It specifically states that it will not cover anything to do

with developmental disorders except ADHD. I am in Stratford, TX. Up here

north

of Amarillo, about 90 mi. I'm practically in OK we're so far north LOL. If

anyone has anything they could share with me on getting him the help we need

for him I sure would appreciate it. Right now ECI is seeing him and he gets

to

see a therapist maybe once a week or so. I want him to get more but I don't

know exactly how much more I should ask for. I appreciate your time .

Sincerely,

Valrie

[Guest guest]

,

I would suggest that you push ECI for more services. Your

description of your son sounds very much like my youngest son, .

He climbs everything in site and has a high pain threshold as well.

is non-verbal @ 35 months and is graduating from ECI this

month.

Have your ECI rep set up evals for your son for speech and OT

services, if he has not had them already. He should qualify for OT

based on sensory integration needs and speech as he is non-verbal.

Based on my experience, he should receive at least one session per

week with each of these therapists and one session a week from

a 'developmental specialist', sort of a catch-all phrase for a

generalist.

I would also start to research what the programs are that your local

ISD provides. Also, start to research what some of the therapies are

that will provide your son with the most benefit and be prepared to

ask the ISD to provide these services to your son.

I will be happy to let you know what worked for us.

Best of Luck!

-

[Guest guest]

In a message dated 8/19/2003 4:58:27 PM Central Standard Time,

Muziqua@... writes:

> Shoot when I was

> pregnant with him I worried about who would tell me when it was time to

> enroll

> him LOL.

Hehehe I am plenty bright but I had this thought too lol.

[Guest guest]

Hello Jim,

We live in Woodstock and my daughter has autism. I would be glad to help you out in any way I can. Please contact me at jgs3@... for further details.

Jim

From: Jim [mailto:bigflatdog@...] Sent: Sunday, March 13, 2005 7:29 PMautism Subject: Introduction

Hello everyone,

I would like to introduce myself. I'm Jim and I recently got married to a beautiful woman who has a wonderful son who has autism. She is moving to Woodstock, Georgia in a few months and I was wondering if I could impose on you to give me suggestions/advice on where to start to get him the assistance he needs in this area. He is eleven years old. I am so thankful to you for any help you can provide.

Jimautismlink <cindy@...> wrote:

What's cool about the new site is that anyone can add any service. Ifyou're a provider in the middle of nowhere Alaska, you can addyourself. We're hoping to make this the most comprehensive list onthe web. http://beta.autismlink.com/services.php?state=TX & region= & servicetype=2 Each state will have its own disucssion board, it's own statewidecalendar where anyone can add events, it's own news headlines.....etc.We'll also be adding a kids art gallery for folks to showcase artworkfrom their kiddos with autism.:-)We put alot of work into this with very little money. I hope it pans out.> I can help.....m_bernstein@b...> Volunteer?> > > > Hi all..> > AutismLink is about to go national and we could use some volunteers to> add stuff to the database from Georgia. Is anyone interested?> > Basically you'd just be adding therapy providers, schools, support> groups, that type of thing. It's very easy work -- just typing it in.> > If anyone can give me a few hours of their time, please let me know. > It's very helpful to newly dx'd parents. We're ready to start> immediately.> > cindy Waeltermann> AutismLink> > > > >