NDSS Conference

[Guest guest]

Plan on seeing me there Sara! I live 40 min form DC! So I will be there!

Michlle MOm to Bill (DS) and Alec age 4 and HUnter age2

[Guest guest]

GREAT !

Where do you live?? I'll be staying with my aunt and

uncle in Bathesda, MD (probably).

Cheers,

Sara

--- Shellhutch@... wrote:

> From: Shellhutch@...

>

> Plan on seeing me there Sara! I live 40 min form DC!

> So I will be there!

> Michlle MOm to Bill (DS) and Alec age 4 and

> HUnter age2

>

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

[Guest guest]

Silly me! And here is the ndss web site:

www.ndss.org

Sorry!

Sara

--- Sara Greenberg <DSyndrome@...> wrote:

> From: Sara Greenberg <DSyndrome@...>

>

>

> Hello!

>

> I spoke with the NDSS today and they should get back

> to me shortly. They seem interested in offering

> something special, in addition to the conference,

> for

> parents of children with Multiples and DS.

>

> Here is some information on their conference. It

> should be exceptional, as they have been planning it

> for two years (the NDSS Conference is NOT annual

> like

> the NDSC).

>

> The conference will be held in Washington, DC on

> July

> 27-29, 2000 at the Loews L'Enfant Plaza Hotel (right

> near the sonian!). The hotel web site is

> http://www.loewshotels.com/lenfanthome.html! A

> single

> room is $119 and a double is $129.

>

> The conference fees are as follows:

>

> *One adult family member - $225

> *Two adults from the same family - $400

> *Person with DS (ages 14 and up) - $100

> *Siblings (ages 14 and up) - $100

> *Professional - $250

> *Affiliate discount (one per group) - $125

>

> The NDSS will offer scholarships, so stay tuned!

> Also,

> if your local DS support group is an affliliate of

> the

> NDSS you MAY be able to get the affiliate discount.

>

> This is what the conference includes: 2.5 days of

> workshops and plenary sessions by top experts, 3

> networking breakfasts and 2 lunches, gala reception

> at

> the US Captol, admission to the exhibits and

> Festival

> of the Arts, invitation to the awards dinner,

> compendium, dance parties (with Burke), and

> MORE! Also, I believe that baby-sitting maybe

> available.

>

> Hope to see ya all there!

> Sara

>

>

>

> __________________________________________________

>

[Guest guest]

Mardi,

I think we parents of children with dual diagnosis should have our own

conference, don't you? I actually find myself unable to identify with the

Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure I

really feel at home with the Autism Society of America. Would be great to

have a newsletter coming on a regular basis on DS/ASD ..it was great to get

the info you put out in Disability Solutions, Joan. Look at all the info

that pops up on this list!!!

Lauri in Michigan with Gene 11 with DS and autism, Drew 9 and Melinda 4.

[Guest guest]

Joan,

If we had our own conference, I would personally be very interested in how to

identify the source of problem behaviors. Right now I am wondering about how

to do functional assessments, who does them and what sort of results do you

get. Perhaps this was in a prior Disabilities Solution. Second, I am very

interested in how to successfully include a child with DS/ASD in a regular

classroom environment. I have been trying for four years to get it right.

This year it is getting very tough due to increasing " problem behaviors " .

Not only behavior, but what should the inclusive day look like?? Third, we

are not into medication with my son...yet...and maybe won't get there. But I

read all the info on the list and print alot of it in case we ever see a

psychiatrist. I would want up to date information to share with him. A

section on current medication would be great. Fourth, a section on sensory

issues and intervention. Fifth, communication boards, devices, PECS, etc.

Six, Circle of Friends. I could go on and on but those would all be very

helpful to my family.

Lauri ( Gene 11, Drew 9, and Melinda 4)

[Guest guest]

At 10:07 AM 3/27/00 +0000, you wrote:

>From: " Mardi Deluhery " <mdeluhery@...>

>

I wonder

>if enough of us ask if they would have a strand of workshops on behavior

>issues. D.C. is close enough to get someone the Baltimore docs. The

>brochure that I got doesn't have any detail about workshops. Does anyone

>know any more? Joan?

Well......................

Here's the link with the agenda:

http://www.ndss.org/eventsconferences/nationalconference/program/program.html

They have this specific workshop planned:

Autism and Down Syndrome - Capone, M.D., Director, Down Syndrome

Clinic, Kennedy Krieger Institute & Bonnie , M.D., Cincinnati

Center for Developmental Disorders, University of Cincinnati

They also are planning a " networking " or " discussion " time after conference

hours for famlies of kids with ds and autism. I've been asked to facilitate

(that means I just make sure the room is open). I asked both Drs

and Capone to attend and they have agreed. Dr. Capone suggested we try to

find someone knowledgeable in " behavior " to attend also. I may ask Dr.

Dennis McGuire. Although he's not an autism specialist, he's a practical

sort of guy. But....I may not. I don't want too many " professionals " there.

My hope is that people can share about their families and network with each

other. And if there are some medical related questions specific to this,

we have a couple of docs there.

In Wisconsin, there was a brief (very brief) discussion at the DSMIG Q/A

session one day. Dr. Capone fielded it and then dropped me into the fire

from my quiet place on the sideline by saying I was working on some sort of

parent-networking (we had just gone to baltimore two months prior). That

was the pressure cooker to get the listserv up.

There was a lot of discussion in Pittsburgh on the topic. NDSC hadn't

really thought of it until I raised the question with the conference

organizer. Although I suspect Dr. Capone will be there also, I can't tell

you if they'll take my hint that it would be nice if they did that. They

did have a smaller workshop on the topic in Pittsburgh. I believe Sara

Cohen was there....unfortunately I was booked somewhere else for a

" feeding " wokrshop.

So....there's all the dirt.

Joan

[Guest guest]

At 11:21 AM 3/27/00 EST, you wrote:

>From: timothytlstein@...

>I think we parents of children with dual diagnosis should have our own

>conference, don't you?

It would be nice and fun. We can dream and see where our dreams take us. As

I recall our Aussie friends are bringing Mel for Sherry?

I actually find myself unable to identify with the

>Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure I

>really feel at home with the Autism Society of America.

Having been to all three fo these conferences, I can say that I understand

what youa re saying. However, I also have come to believe that no

conference meets everyone's needs entirely. I've gotten to the point where

I realize that if there are 3 workshops that I honestly walk away with

something tangible to work with, that it is a good conference overall. It's

too difficult to cover the vast range of abilities either in ds, autism, or

the two combined!

I think I felt hte most at home at the autism society meeting. The reason

was that the information was more easily adapted to Andys' needs. Most used

visual strategies, they understood the need for some sort of routine to the

teaching, and when I told people my son had ds and autism, they didn't

react like I was a leper. They just said, Oh. Well, tell me more about him.

I think the D/S issue on ds/asd has helped raise awareness that there are

families who feel left out and neglected in the ds community. It's not just

those of us whose children have autism, but frankly, it's kids who are not

speaking, kids who need significant curricular adaptation, kids who have

other medical issues (some physical, some neurological)---kids who are not

the " stereotype " that is proliferated by these organizations. You should

hear me at meetings raising questions that are relevant to kids who are

" lower functioning " or " atypical. " I'm forever speaking up for the child

whose speech is late to come or never comes, for the child who isn't potty

trained at 10, for the child who has not had a supportive classroom

environment and thus has " behaviors. " Quite frankly I stymie them a lot of

the time. But if they truly want to do what they say they want to do, they

will listen and make efforts to dela with the situation. I have a better

sounding board for this at NDSS than NDSC. That's not to say that NDSC

won't listen, but it is to say that they won't listen to *me* right now.

Sheila Hebein of NADS has probably the best understanding of where we

stand. She was quite vocal at the DSMIG meeting over our ds/asd issue I

guess. She is a great supporter, but her group is local and that's OK. She,

too, challenged everyone in the room not to forget that there is a wide

range of abilities and that " we " have neglected a great portion of the ds

community over the years. I wasn't there to hear it in person, but I heard

all about it when I arrived that night!

Now that I've rambled on and on....(can you tell this is an area I'm

passionate about?), I have a question of all of you. If you COULD have your

own conference, what would you want to know? What topics would be of

interest to you? The only way to justify the expenditure to someone like

NDSS is to understand the need very clearly. So.... help me here. I will

promise not to forget what is said and wait for my moments to pounce.

Joan

[Guest guest]

Joan,

This looks great. Now, I have to talk my dh into " letting " me go. I hope

to see some of you there. (If I make it)

S

________________________________________________________________

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[Guest guest]

On Mon, 27 Mar 2000 09:54:58 -0800 " Scherbert " <Scherb@...>

writes:

> From: " Scherbert " <Scherb@...>

>

> >

> >>Now that I've rambled on and on....(can you tell this is an area

> I'm

> >>passionate about?), I have a question of all of you. If you COULD

> have your

> >>own conference, what would you want to know? What topics would be

> of

> >>interest to you? The only way to justify the expenditure to

> someone like

> >>NDSS is to understand the need very clearly. So.... help me here.

> I will

> >>promise not to forget what is said and wait for my moments to

> pounce.

> >>

> Joan,

>

> 1. Medications-what being used, why, outcomes

> 2. ABA-and how to use it(practical stuff)

> 3. Sensory Intergration-how and why it helps

> 4. Finding and keeping a doctor who is knowledgable

> 5. Educating-IEP

> 6. School-homebased?-site based?-in home taught by local school

> system?

>

> that is a start!

>

>

>

Joan,

DITTO

Plus, accessing special programs (i.e. Beckett waiver, SSI, etc...)

S

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

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[Guest guest]

>

>>Now that I've rambled on and on....(can you tell this is an area I'm

>>passionate about?), I have a question of all of you. If you COULD have your

>>own conference, what would you want to know? What topics would be of

>>interest to you? The only way to justify the expenditure to someone like

>>NDSS is to understand the need very clearly. So.... help me here. I will

>>promise not to forget what is said and wait for my moments to pounce.

>>

Joan,

1. Medications-what being used, why, outcomes

2. ABA-and how to use it(practical stuff)

3. Sensory Intergration-how and why it helps

4. Finding and keeping a doctor who is knowledgable

5. Educating-IEP

6. School-homebased?-site based?-in home taught by local school system?

that is a start!

& Garry, parents of (9), (8), JJ (6), (5), and

Esther (3). All adopted & with Down Syndrome.

-

[Guest guest]

At 09:53 AM 3/27/00 -0800, you wrote:

>From: J Stolz <stolzfamily@...>

>Plus, accessing special programs (i.e. Beckett waiver, SSI, etc...)

Ooo. I have this on my wish list for D/S. Trouble is, each state is

different and not all states have a waiver (we don't, so there's no way for

me to access SSI at all without cutting my income dramatically).

Keep the ideas coming! I'm making a list.

And , if your DH " lets " you go (how I understand!), be sure and let me

know.

j

[Guest guest]

Among my list is:

1. When to introduce a system for communication other than sign langauge?

How do you know when Sign language isn't a viable option, nor is speech,

without drastically delaying the child's communicative progress?

2. How to promote learning at home without turning home into a school.

I have others, but that's it for now. I'm supposed to either be working or

going for a run!

j

[Guest guest]

BEHAVIOR STRATEGIES> Functional Analysis> Meanings of Behaviors Substituting

Relevant Social Behaviors for " Unacceptable " .

Can you see that behavior is the issue.

Sara

>>> jmedlen@... - 03/27/0 11:40 AM >>>

From: " Joan E. Guthrie Medlen " <jmedlen@...>

At 11:21 AM 3/27/00 EST, you wrote:

>From: timothytlstein@...

>I think we parents of children with dual diagnosis should have our own

>conference, don't you?

It would be nice and fun. We can dream and see where our dreams take us. As

I recall our Aussie friends are bringing Mel for Sherry?

I actually find myself unable to identify with the

>Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure I

>really feel at home with the Autism Society of America.

Having been to all three fo these conferences, I can say that I understand

what youa re saying. However, I also have come to believe that no

conference meets everyone's needs entirely. I've gotten to the point where

I realize that if there are 3 workshops that I honestly walk away with

something tangible to work with, that it is a good conference overall. It's

too difficult to cover the vast range of abilities either in ds, autism, or

the two combined!

I think I felt hte most at home at the autism society meeting. The reason

was that the information was more easily adapted to Andys' needs. Most used

visual strategies, they understood the need for some sort of routine to the

teaching, and when I told people my son had ds and autism, they didn't

react like I was a leper. They just said, Oh. Well, tell me more about him.

I think the D/S issue on ds/asd has helped raise awareness that there are

families who feel left out and neglected in the ds community. It's not just

those of us whose children have autism, but frankly, it's kids who are not

speaking, kids who need significant curricular adaptation, kids who have

other medical issues (some physical, some neurological)---kids who are not

the " stereotype " that is proliferated by these organizations. You should

hear me at meetings raising questions that are relevant to kids who are

" lower functioning " or " atypical. " I'm forever speaking up for the child

whose speech is late to come or never comes, for the child who isn't potty

trained at 10, for the child who has not had a supportive classroom

environment and thus has " behaviors. " Quite frankly I stymie them a lot of

the time. But if they truly want to do what they say they want to do, they

will listen and make efforts to dela with the situation. I have a better

sounding board for this at NDSS than NDSC. That's not to say that NDSC

won't listen, but it is to say that they won't listen to *me* right now.

Sheila Hebein of NADS has probably the best understanding of where we

stand. She was quite vocal at the DSMIG meeting over our ds/asd issue I

guess. She is a great supporter, but her group is local and that's OK. She,

too, challenged everyone in the room not to forget that there is a wide

range of abilities and that " we " have neglected a great portion of the ds

community over the years. I wasn't there to hear it in person, but I heard

all about it when I arrived that night!

Now that I've rambled on and on....(can you tell this is an area I'm

passionate about?), I have a question of all of you. If you COULD have your

own conference, what would you want to know? What topics would be of

interest to you? The only way to justify the expenditure to someone like

NDSS is to understand the need very clearly. So.... help me here. I will

promise not to forget what is said and wait for my moments to pounce.

Joan

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

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[Guest guest]

In a message dated 3/27/00 3:14:45 PM Eastern Standard Time,

timothytlstein@... writes:

<< I would want up to date information to share with him. A

section on current medication would be great. Fourth, a section on sensory

issues and intervention. Fifth, communication boards, devices, PECS, etc.

Six, Circle of Friends. I could go on and on but those would all be very

helpful to my family.

>>

Ditto. AND I would like to see ALL the various type approaches to dealing

with autism. For example, Floortime (you knew I was gonna say this Joan,

didn't you?!?). I am a HUGE believer in it for Maddie and it amazes me how

few people really understand it. It seems everywhere I go everybody knows

about ABA, discrete, TEACCH...............but no one seems to know Floortime.

As ALL here know, we can't make decisions about what works for our kids

unless we know ALL that's out there.

Donna

[Guest guest]

Joan, where or where do you get all the time and the abilitity to go to

all these conferences. I am so " jealous " . I have always found

information so wonderful but you are also so involved that is so great

but the time involved.......... I have gone to many Down Syndrome

conventions, well ok not many but at least a few and I have always hated

how the " stars " always appear. The ones who are high functioning. I

really do not think they give the true, the medium of that bell shaped

curve with regard to Down Syndrome you know the average. I do not know

why except that we do it in society in general with our movie stars and

glamour models but they are not the average " Joe " . I just would think

the these organization would really want to show ALL aspects of the

syndrome and what goes on not just the best of the best.

You are doing a wonderful job of bring this issue forward of DS/Autism

and that is so great. Man I wish I had the ability to go to this

conference for many reasons the most to just meet some of the people you

talk about. Keep up the great work. R.

" Joan E. Guthrie Medlen " wrote:

> From: " Joan E. Guthrie Medlen " <jmedlen@...>

>

> At 10:07 AM 3/27/00 +0000, you wrote:

> >From: " Mardi Deluhery " <mdeluhery@...>

> >

> I wonder

> >if enough of us ask if they would have a strand of workshops on

> behavior

> >issues. D.C. is close enough to get someone the Baltimore docs. The

> >brochure that I got doesn't have any detail about workshops. Does

> anyone

> >know any more? Joan?

>

> Well......................

>

> Here's the link with the agenda:

>

> ttp://www.ndss.org/eventsconferences/nationalconference/program/program.html

>

> They have this specific workshop planned:

> Autism and Down Syndrome - Capone, M.D., Director, Down

> Syndrome

> Clinic, Kennedy Krieger Institute & Bonnie , M.D., Cincinnati

>

> Center for Developmental Disorders, University of Cincinnati

>

> They also are planning a " networking " or " discussion " time after

> conference

> hours for famlies of kids with ds and autism. I've been asked to

> facilitate

> (that means I just make sure the room is open). I asked both Drs

>

> and Capone to attend and they have agreed. Dr. Capone suggested we try

> to

> find someone knowledgeable in " behavior " to attend also. I may ask Dr.

>

> Dennis McGuire. Although he's not an autism specialist, he's a

> practical

> sort of guy. But....I may not. I don't want too many " professionals "

> there.

> My hope is that people can share about their families and network with

> each

> other. And if there are some medical related questions specific to

> this,

> we have a couple of docs there.

>

> In Wisconsin, there was a brief (very brief) discussion at the DSMIG

> Q/A

> session one day. Dr. Capone fielded it and then dropped me into the

> fire

> from my quiet place on the sideline by saying I was working on some

> sort of

> parent-networking (we had just gone to baltimore two months prior).

> That

> was the pressure cooker to get the listserv up.

>

> There was a lot of discussion in Pittsburgh on the topic. NDSC hadn't

> really thought of it until I raised the question with the conference

> organizer. Although I suspect Dr. Capone will be there also, I can't

> tell

> you if they'll take my hint that it would be nice if they did that.

> They

> did have a smaller workshop on the topic in Pittsburgh. I believe Sara

>

> Cohen was there....unfortunately I was booked somewhere else for a

> " feeding " wokrshop.

>

> So....there's all the dirt.

>

> Joan

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

>

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

>

[Guest guest]

YES......YES.....YES....YOU GO GIRL!!!!! This is not the first time I

have heard what you are saying. Sometimes I felt it was duty as a

parent to get my kid to where all the " DownSyndrome Stars " are and if we

do not there must be something wrong and therefore we do not real fit as

we are to hard to deal with. Besides reality is always hard to deal

with. I really do not want to get on the soap box you did a great job

yourself besides I might not get down.

What would I like to see at a conference. That takes some thought. One

is well inclussion. Since Zach is now 15 I have lots of questions esp.

because of where he functions. I was such an inclusion fanatic at one

time but I have come a full 180 degress and it is too long to go into

but inclussion, especially in the older classes and the difference

really start to become apparent in and about fourth grade. It is not

inclusion for inclusions sack but where will the child be best served

where he will benefit the most to get the most from his education so the

he successfully go distance he can go and actually learn things that are

important for him to use and function in society and the community. I

do not hang with doctors and lawyers but with people I have things in

common with and relate to. Is that not where it is at. The pendulm

swings from segregation and self containment to full inclussion to where

it should be someplace in the middle and thats ok. It does not mean

you as a parent are not doing your job or the school does not want to

deal with inclussion it just means that we are looking at what the child

really needs to be successful in life. There is more but boy the

subject would definatly be great to brain storm with a whole group of

people live and in person. Oh the things we would come up with.

R.

From: " Joan E. Guthrie Medlen " <jmedlen@...>

At 11:21 AM 3/27/00 EST, you wrote:

>From: timothytlstein@...

>I think we parents of children with dual diagnosis should have our own

>conference, don't you?

It would be nice and fun. We can dream and see where our dreams take us.

As

I recall our Aussie friends are bringing Mel for Sherry?

I actually find myself unable to identify with the

>Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure

I

>really feel at home with the Autism Society of America.

Having been to all three fo these conferences, I can say that I

understand

what youa re saying. However, I also have come to believe that no

conference meets everyone's needs entirely. I've gotten to the point

where

I realize that if there are 3 workshops that I honestly walk away with

something tangible to work with, that it is a good conference overall.

It's

too difficult to cover the vast range of abilities either in ds, autism,

or

the two combined!

I think I felt hte most at home at the autism society meeting. The

reason

was that the information was more easily adapted to Andys' needs. Most

used

visual strategies, they understood the need for some sort of routine to

the

teaching, and when I told people my son had ds and autism, they didn't

react like I was a leper. They just said, Oh. Well, tell me more about

him.

I think the D/S issue on ds/asd has helped raise awareness that there

are

families who feel left out and neglected in the ds community. It's not

just

those of us whose children have autism, but frankly, it's kids who are

not

speaking, kids who need significant curricular adaptation, kids who have

other medical issues (some physical, some neurological)---kids who are

not

the " stereotype " that is proliferated by these organizations. You should

hear me at meetings raising questions that are relevant to kids who are

" lower functioning " or " atypical. " I'm forever speaking up for the child

whose speech is late to come or never comes, for the child who isn't

potty

trained at 10, for the child who has not had a supportive classroom

environment and thus has " behaviors. " Quite frankly I stymie them a lot

of

the time. But if they truly want to do what they say they want to do,

they

will listen and make efforts to dela with the situation. I have a better

sounding board for this at NDSS than NDSC. That's not to say that NDSC

won't listen, but it is to say that they won't listen to *me* right now.

Sheila Hebein of NADS has probably the best understanding of where we

stand. She was quite vocal at the DSMIG meeting over our ds/asd issue I

guess. She is a great supporter, but her group is local and that's OK.

She,

too, challenged everyone in the room not to forget that there is a wide

range of abilities and that " we " have neglected a great portion of the

ds

community over the years. I wasn't there to hear it in person, but I

heard

all about it when I arrived that night!

Now that I've rambled on and on....(can you tell this is an area I'm

passionate about?), I have a question of all of you. If you COULD have

your

own conference, what would you want to know? What topics would be of

interest to you? The only way to justify the expenditure to someone like

NDSS is to understand the need very clearly. So.... help me here. I will

promise not to forget what is said and wait for my moments to pounce.

Joan

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

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

[Guest guest]

WOW, you get exercise in too. I am really impressed and I am not being

sarcastic at all really I am just getting more " jealous " . Matter of

fact I notice my skin tone taking on the strange green

tinge....... HMMMMMM R.

" Joan E. Guthrie Medlen " wrote:

> From: " Joan E. Guthrie Medlen " <jmedlen@...>

>

> Among my list is:

>

> 1. When to introduce a system for communication other than sign

> langauge?

> How do you know when Sign language isn't a viable option, nor is

> speech,

> without drastically delaying the child's communicative progress?

>

> 2. How to promote learning at home without turning home into a school.

>

> I have others, but that's it for now. I'm supposed to either be

> working or

> going for a run!

>

> j

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

>

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

>

[Guest guest]

I am not surprised that a teacher who has a 25 year old son with DS would

say that autism doesn't co-exist with DS. I have a 20 year old daughter and

until very recently that is what everyone thought. It is certainly what I

was told for years. A lot of characteristics that we would now see as ASD

were written off as characteristics of " low functioning " persons with mental

retardation (whether the person had DS or MR for another reason). Autism

was a very narrow diagnosis that did not include the spectrum that we think

of today. As recently as 1995, Dr. Van Dyke etc. say in " Medical and

Surgical Care for Children With Down Syndrome " that " there is seldom a

particular advantage to adding the diagnosis of autism to a person with Down

Syndrome. There is some danger, however, because many people see autism as

a " hopeless " condition without much chance for change or response to

treatment. " (p.282).

What has changed radically in very recent years are the medication options

and the the therapeutic techniques such as PECS and discrete trial.

All of this is to say that there is an enormous need for more information

out there to parents and the professional community. Joan's Disability

Solutions issue has been very, very useful but we need to do lots more.

This discussion of a conference is pretty exciting although no small

endeavor.

Mardi

----------

>From: JANDMJKING@...

>onelist

>Subject: NDSS CONFERENCE

>Date: Wed, Mar 29, 2000, 11:32 AM

>

>From: JANDMJKING@...

>

>Joan,

>

>What I would like to see is more literature about a dual diagnoses. I

>called our local support group when I started suspecting Tori had autism and

>they know nothing about it being anything that could coexisting with ds. I

>call NDSS they sent me a list of all the medical things that could happen to

>people with ds. Autism was not on the list; and 2 small articles about ds/ads

> that were dated, not current articles. I would like to see them add asd to

>the medical list of things that could happen to people with ds. I don't

>know if I am the only one or not but I got and still get a lot of negative

>comments every time I say Tori has both ds and asd. Last year when we were

>going through trying to get her diagnosed her preschool teacher who is a

>special Ed teacher and also has a son 25 who has ds gave me the most trouble

>she told me no way does Tori have autism that the things I was seeing were

>common to kids with ds. Drs. teacher, school officials, and on and on have

>no clue. How can we get the word out that at least 10% of kids with ds also

>have asd? Plus wouldn't it be helpful for people who are living through

>having a child or an adult with ds/asd to be able to have more info. I know

>how relived I was when Disabilities Solutions had info in the special

>edition. I can at least wave it in front of someone's nose when they give me

>grief.

>

>Janet mom to Tori 5 ds - pddnos - ocd

>

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[Guest guest]

In a message dated 3/27/00 10:22:18 AM Central Standard Time,

timothytlstein@... writes:

<< I think we parents of children with dual diagnosis should have our own

conference, don't you? >>

Amen!! Who wants to organize? I'll help!

Maureen

[Guest guest]

In a message dated 3/27/00 10:42:19 AM Central Standard Time,

jmedlen@... writes:

<< f you COULD have your

own conference, what would you want to know? What topics would be of

interest to you? >>

A session on ABA - discreet trial training - other behavior modification

methods used with success in the DS-ASD population (Barbara Doyle?).

A session on how families can cope - support networks, in-home respite,

out-of-home respite, how to ask for help and how to get it, how to preserve

your marriage and family health, etc. (Like what you're doing at NADS,

Joan!!!) - this one could be facilitated by a panel of parents and perhaps a

phychologist or two.

A session on medications - what they are, how they work, side effects, etc.

and how to gather data about problem behaviors BEFORE deciding on if meds and

if so, what meds.

A session on how to coordinate all the docs in your child's life - who should

be the case manager - behavioral pediatrician, autism specialist, regular

pediatrician, etc. - coordination between all the docs, especially when your

child has lots of medical issues too, can be very difficult.

A session on education - curricular adaptations, circle of friends, how to

successfully include, etc.

I could go one, but I'd better stop! Are you sorry you asked, Joan?

Maureen

[Guest guest]

At 07:00 PM 4/1/00 EST, you wrote:

>I could go one, but I'd better stop! Are you sorry you asked, Joan?

>

Just the opposite. I find this very helpful.

j

[Guest guest]

joan,

about the ndss, i will be there......... sent in stuff already...... about

ryan and his touristy excursions, i would definitely recommend the old town

trolley......... you pay like 16.oo dollars, but see the whole town,

georgetown included......... the air and space is cool, along with the

natural history musuem.......but all the smiths are cool and to walk along

arlington cemetary at night and see changing of the guards is neato

too......... but since your time is limited you could always take him on teh

midnight cruise of dc...........that is my favorite and hes old enough to

enjoy it.........hope to say hello there.....leah

[Guest guest]

Leah:

Thanks for all the tourist tips. We will get there a few days early and are

staying a few days later so we can get it in. I do want him to see the

changing of the guard. Arlington is on our list, most definitely...as are a

few hundred other things. We get a private tour of the white house and a

capitol tour as well.

Is Ashton coming with you or....(dare I ask)....are you coming *alone*???

Hope to see you there.

j

[Guest guest]

I'm going to have to get DH looking at this. I want to go. I think I have

enough frequent flyer miles. Leah, are you staying in a hotel? Are you by

yourself? Do you need a roomie? (Dont you like my " subtle " approach??)

This is my goal, to get registered and plane reservations made for this

conference.

S

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[Guest guest]

Joan,

i am planning on coming alone..........hehe my hub finally took leave from

military last two weeks of july.........about time...... lolol anyways, i am

thinking of having him come up for a visit for the afternoon........i only

live about 40 miles outside dc, so its not to far......... and bring the

kids........ashton loves the zoo, the national aquarium and freedom plaza

which is by the hotel..... i used to work for a law firm by there and she

spent many days in their children's center........... its a nice place to

relax............but for the most part......i am on my own............zippee

skippe..........take care, leah