I Need ALL of you to help--Creating the Informatoin Center

[Guest guest]

I'm not sure what kind of statement you need but here is my thoughts.

If you can use any of this please feel free to do so. You can edit it to

meet your needs. :-)

When Trisha was just a baby and I was seeking information on just Down

Syndrome (this is before we knew about Autism) there was not a lot of

information

that was easy to access. I started suspecting Trisha had the dual dx when

she was about 5-6 but all the professionals said it' just the DS. I found the

DS-Autism group and wow what a difference that has made in our life's. The

information shared with each other in this group, not to mention the support

and understanding and the friendships we have made over the years has been

more valuable to us than one could ever imagine. To have a central web site

where you can get information, support from other parents going through the

same is not only a dream come true but in my opinion a necessity.

Carol

Trishasmom

She isn't typical, She's Trisha!

If we always do what we always did,

we'll always get what we've always gotten!

[Guest guest]

I forgot to mention, because of all the support, education, information

that was shared with me over the years the very fact that Trisha will be going

to an Autism school this year is partly due to the help I have received from

this group! Thanks everyone!

Carol

Trishasmom

She isn't typical, She's Trisha!

If we always do what we always did,

we'll always get what we've always gotten!

[Guest guest]

I'm behind you 100% Joan!

Liz

I Need ALL of you to help--Creating the Informatoin

Center

> Hi Everyone,

>

> For YEARS I have wanted to start a more official website for all of

> us: parents, professionals, and people with Down syndrome and

> autistic spectrum disorders. Due to changes in my work situation, I

> am now at a point where I can actively pursue this. If you are a

> subscriber to the print edition of Disability Solutions, you

> received an donation envelope. On that envelope there is a place to

> designate funds for " The Down Syndrome and Autism Internet

> Invormation Center. " It has warmed my heart when a donation comes in

> specifically for this project.

>

> Today and tomorrow I will be attempting to write my first " letter of

> intent " for this project. What this means is I am writing to a

> foundation to ask them to consider a proposal to create this

> informatoin center.

>

> But to do this, I need your help.

>

> Here is what I need:

>

> 1. If you have been told that people with Down syndrome can NOT have

> both DS and autism, tell me that story in about 5 sentences. Tell me

> WHO said it (not hteir name, but their title) and when it was said

> to you.

>

> 2. If you had or are having trouble finding someone to evaluate your

> child for autism, tell me your location and describe the situation

> in about 5 sentences.

>

> 3. If you have beent old, despite evaluations to the contrary, that

> your child does NOT have autism, but rather severe MR, I'd like to

> hear about that as well.

>

> I will not use names without permission. If I use your quote, I will

> run it by you before I send it out.

>

> HOWEVER, I need these quotes NOW. I must have this pulled together

> by Wednesday.

>

> Last, any ideas of what you would like to have happen with an

> internet information center would be most welcome too. For a

> reference of what I've seen and been considering,check out

> www.bpkids.org.

>

> We all need to pull together fo this one! This is OUR project. I

> plan to include as many people and organizations as I can--and you

> are my group of experts (advisory panel)!

>

> thanks!

> Joan

>

>

>

>

>

>

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

> Checkout our homepage for information, bookmarks, and photos

> of our kids. Share favorite bookmarks, ideas, and other information by

> including them. Don't forget, messages are a permanent record of the

> archives for our list. http://groups.yahoo.com/group/

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

>

[Guest guest]

Thanks!

Got any statements for me?

I'll keep you guys posted...

j

--- Liz D wrote:

> I'm behind you 100% Joan!

>

> Liz

> I Need ALL of you to

> help--Creating the Informatoin

> Center

>

>

> > Hi Everyone,

> >

> > For YEARS I have wanted to start a more official

> website for all of

> > us: parents, professionals, and people with Down

> syndrome and

> > autistic spectrum disorders. Due to changes in my

> work situation, I

> > am now at a point where I can actively pursue

> this. If you are a

> > subscriber to the print edition of Disability

> Solutions, you

> > received an donation envelope. On that envelope

> there is a place to

> > designate funds for " The Down Syndrome and Autism

> Internet

> > Invormation Center. " It has warmed my heart when a

> donation comes in

> > specifically for this project.

> >

> > Today and tomorrow I will be attempting to write

> my first " letter of

> > intent " for this project. What this means is I am

> writing to a

> > foundation to ask them to consider a proposal to

> create this

> > informatoin center.

> >

> > But to do this, I need your help.

> >

> > Here is what I need:

> >

> > 1. If you have been told that people with Down

> syndrome can NOT have

> > both DS and autism, tell me that story in about 5

> sentences. Tell me

> > WHO said it (not hteir name, but their title) and

> when it was said

> > to you.

> >

> > 2. If you had or are having trouble finding

> someone to evaluate your

> > child for autism, tell me your location and

> describe the situation

> > in about 5 sentences.

> >

> > 3. If you have beent old, despite evaluations to

> the contrary, that

> > your child does NOT have autism, but rather severe

> MR, I'd like to

> > hear about that as well.

> >

> > I will not use names without permission. If I use

> your quote, I will

> > run it by you before I send it out.

> >

> > HOWEVER, I need these quotes NOW. I must have

> this pulled together

> > by Wednesday.

> >

> > Last, any ideas of what you would like to have

> happen with an

> > internet information center would be most welcome

> too. For a

> > reference of what I've seen and been

> considering,check out

> > www.bpkids.org.

> >

> > We all need to pull together fo this one! This is

> OUR project. I

> > plan to include as many people and organizations

> as I can--and you

> > are my group of experts (advisory panel)!

> >

> > thanks!

> > Joan

> >

> >

> >

> >

> >

> >

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

> > Checkout our homepage for information,

> bookmarks, and photos

> > of our kids. Share favorite bookmarks, ideas, and

> other information by

> > including them. Don't forget, messages are a

> permanent record of the

> > archives for our list.

> http://groups.yahoo.com/group/

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

> >

[Guest guest]

Actually, I was quite lucky. I had worked with kids with Autism and started

realizing how alike Tori's behaviors were to theirs. I presented it to the

professionals, and they agreed with me! And here we are.

Liz

I Need ALL of you to

>> help--Creating the Informatoin

>> Center

>>

>>

>> > Hi Everyone,

>> >

>> > For YEARS I have wanted to start a more official

>> website for all of

>> > us: parents, professionals, and people with Down

>> syndrome and

>> > autistic spectrum disorders. Due to changes in my

>> work situation, I

>> > am now at a point where I can actively pursue

>> this. If you are a

>> > subscriber to the print edition of Disability

>> Solutions, you

>> > received an donation envelope. On that envelope

>> there is a place to

>> > designate funds for " The Down Syndrome and Autism

>> Internet

>> > Invormation Center. " It has warmed my heart when a

>> donation comes in

>> > specifically for this project.

>> >

>> > Today and tomorrow I will be attempting to write

>> my first " letter of

>> > intent " for this project. What this means is I am

>> writing to a

>> > foundation to ask them to consider a proposal to

>> create this

>> > informatoin center.

>> >

>> > But to do this, I need your help.

>> >

>> > Here is what I need:

>> >

>> > 1. If you have been told that people with Down

>> syndrome can NOT have

>> > both DS and autism, tell me that story in about 5

>> sentences. Tell me

>> > WHO said it (not hteir name, but their title) and

>> when it was said

>> > to you.

>> >

>> > 2. If you had or are having trouble finding

>> someone to evaluate your

>> > child for autism, tell me your location and

>> describe the situation

>> > in about 5 sentences.

>> >

>> > 3. If you have beent old, despite evaluations to

>> the contrary, that

>> > your child does NOT have autism, but rather severe

>> MR, I'd like to

>> > hear about that as well.

>> >

>> > I will not use names without permission. If I use

>> your quote, I will

>> > run it by you before I send it out.

>> >

>> > HOWEVER, I need these quotes NOW. I must have

>> this pulled together

>> > by Wednesday.

>> >

>> > Last, any ideas of what you would like to have

>> happen with an

>> > internet information center would be most welcome

>> too. For a

>> > reference of what I've seen and been

>> considering,check out

>> > www.bpkids.org.

>> >

>> > We all need to pull together fo this one! This is

>> OUR project. I

>> > plan to include as many people and organizations

>> as I can--and you

>> > are my group of experts (advisory panel)!

>> >

>> > thanks!

>> > Joan

>> >

>> >

>> >

>> >

>> >

>> >

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

>> > Checkout our homepage for information,

>> bookmarks, and photos

>> > of our kids. Share favorite bookmarks, ideas, and

>> other information by

>> > including them. Don't forget, messages are a

>> permanent record of the

>> > archives for our list.

>> http://groups.yahoo.com/group/

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

>> >

[Guest guest]

Hi Joan, Hope this isn't too late.

Here is what I need:

1. If you have been told that people with Down syndrome can NOT have

both DS and autism,

Yes, Seth's preschool teacher and ped both said no autism with DS. The

teacher changed her mind after working with Seth a few weeks.

2. If you had or are having trouble finding someone to evaluate your

child for autism,

No, got the dual Dx at age two

..

3. If you have beent old, despite evaluations to the contrary, that

your child does NOT have autism, but rather severe MR,

Yes, still get that once in a while, but usually not after the person works

with Seth a couple times. Finally got asd as the primary dx on Seth's IEP

Gail :-).

[Guest guest]

HI jOAN,

I thouoght was acting autistic when we lived in West Virginia I did some

research on the subject and presentred it to his teacher. I asked her to

look through it and tell me what she thought. She returned it to me a few days

later and said " Very interesting I never heard of such a thing before. " I then

took 2 hours away to Columbus childrens hospital for his dual diagnosis.

We are in New York now and have no problems.

Viola

[Guest guest]

Thanks for your work here Joan, I may be too late but it is Tues, so

just wanted to say:

went to a great pre-school when 2 and his own therapists were

suspecting autism. A woman who was a social worker at the pre-school

I believe, and who was a big part of the school told me she felt

like had d/s only and if I look around alot of the kids there

were like him.

other then this as he got older and was evaluated at 3, it seems

everyone thought he seemed more like a child with autism than ds.

One dr. said just not important to think of autism diag.

this is just how his brain works.

Joan, you are doing a great job. sorry I am so late with this!

let us know if you need anything else. Dawn

> Hi Everyone,

>

> For YEARS I have wanted to start a more official website for all

of

> us: parents, professionals, and people with Down syndrome and

> autistic spectrum disorders. Due to changes in my work situation,

I

> am now at a point where I can actively pursue this. If you are a

> subscriber to the print edition of Disability Solutions, you

> received an donation envelope. On that envelope there is a place

to

> designate funds for " The Down Syndrome and Autism Internet

> Invormation Center. " It has warmed my heart when a donation comes

in

> specifically for this project.

>

> Today and tomorrow I will be attempting to write my first " letter

of

> intent " for this project. What this means is I am writing to a

> foundation to ask them to consider a proposal to create this

> informatoin center.

>

> But to do this, I need your help.

>

> Here is what I need:

>

> 1. If you have been told that people with Down syndrome can NOT

have

> both DS and autism, tell me that story in about 5 sentences. Tell

me

> WHO said it (not hteir name, but their title) and when it was said

> to you.

>

> 2. If you had or are having trouble finding someone to evaluate

your

> child for autism, tell me your location and describe the situation

> in about 5 sentences.

>

> 3. If you have beent old, despite evaluations to the contrary,

that

> your child does NOT have autism, but rather severe MR, I'd like to

> hear about that as well.

>

> I will not use names without permission. If I use your quote, I

will

> run it by you before I send it out.

>

> HOWEVER, I need these quotes NOW. I must have this pulled

together

> by Wednesday.

>

> Last, any ideas of what you would like to have happen with an

> internet information center would be most welcome too. For a

> reference of what I've seen and been considering,check out

> www.bpkids.org.

>

> We all need to pull together fo this one! This is OUR project. I

> plan to include as many people and organizations as I can--and you

> are my group of experts (advisory panel)!

>

> thanks!

> Joan

[Guest guest]

Hi Joan,

I have never actually posted before! I should at least introduce myself.

My name is Margie and my husband and I have an adorable almost 4

year old named Cristian with DS and now Autism. We are presently in the

middle of a move from Southern California to the East Bay in Northern

California. I joined this group because I suspected my son had both DS

and Autism. This group helped me to push for the diagnosis. I hope that

you realize how amazing you are!!

I hope that you can still use the information.

Here is what I need:

1. If you have been told that people with Down syndrome can NOT have

both DS and autism,

Yes, my son Cristian's pediatrician who has many patients who have DS

stated he did not think that was possible and particularly with Cristian

since he was so social.

The pediatric PT who provided early intervention services for Cristian

until he was 3 also stated that it was unlikely you could have both

diagnosis.

2. If you had or are having trouble finding someone to evaluate your

child for autism,

I was told by our regional center counselor ( California) that he did not

have autism because Cristian was too social!! His early intervention

school also stated he could not possible have autism. But I will tell you

that his preschool teacher in our school district suggested I have him

evaluated when I was asking for OT services for him this past April. She

stated she thought he might also have autism.( The school denied OT

services!!) My regional center counselor then agreed to have him

evaluated and he received the diagnosis about three months ago and he

will be 4 in October.

..

3. If you have been told, despite evaluations to the contrary, that

your child does NOT have autism, but rather severe MR,

The same preschool special ed teacher that suggested he might have autism

now states he might just really be immature and have severe MR! She

stated this when I requested an IEP based on his new diagnosis. ( We are

moving to another school district!)

Thank you ,

Margie