NDSS Conference

June 26, 2000

mary, i could use a " roomie " hehe i was planning on staying in hotel, but

have to wait to make reservations after i pay off my credit card from my

oklahoma trip......... i paid my registration fee with leftover scholarship

money.....hehe don't tell on me!!!!lolol i didnt sign up for the dinners or

anything just the regular conference fee......... but i will have dough for

room by then.....i only live about 40 miles outside dc, so its not to

bad........ if i have to drive i will, its not to bad, half my neighbors

work in dc and commute every day...... the train by my house runs right

there........... so we'll see, but let me know...........take care, leah

ps i think the rooms are 119 a night and its two nights, so if we roomied it

would only be 119 a piece......let me know.......heck i can sleep outside on

cardboard over a street vent like half of dc.......lolo take care

June 26, 2000

maybe those of us attending conference could get together for breakfast,

lunch, dinner, midnight snack, chocaholic party, lmao or whatever we choose

and actually meet in person......lmao there is so much to do in dc, i am sure

we could find something mutual........... leah

June 26, 2000

not to be stupid here, maybe i overlooked it, but where is the conference

at? in W.D.C. in georgia? on the southern east coast, and when is it? how

much does something like that cost? ive never been able to ever attend

something like that, due to nothing like that is ever held in Iowa, it seems

anyways or i never hear of any. shawna

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

>Reply-egroups

>egroups

>Subject: Re: NDSS Conference

>Date: Sun, 25 Jun 2000 21:40:49 -0700

>

>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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June 26, 2000

shawna,

the conference is in wash, dc july 27-29, i think.......the cost is 215 for

the conference and the rooms run about 119 a night........... i am calling

to see if i can get military discount or gov. rates........

June 26, 2000

There are two conventions this summer:

NDSS is in Washington, DC July 27-29. At the L'Enfant

NDSC is also in Washington DC August 4-6 At the DC Hilton and Towers

Dr. Capone is presenting on DS/autism at both. EAch have their strong

points and their weak points. The NDSS one covers breakfast and lunch in

the registration fee. NDSC is somewhere around $75 to register, but you're

on your own for food. Hotel costs are quoted as about the same for both.

j

June 27, 2000

how does one register then? shawna

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

>Reply-egroups

>egroups

>Subject: Re: NDSS Conference

>Date: Mon, 26 Jun 2000 18:58:43 -0700

>

>There are two conventions this summer:

>

>NDSS is in Washington, DC July 27-29. At the L'Enfant

>

>NDSC is also in Washington DC August 4-6 At the DC Hilton and Towers

>

>Dr. Capone is presenting on DS/autism at both. EAch have their strong

>points and their weak points. The NDSS one covers breakfast and lunch in

>the registration fee. NDSC is somewhere around $75 to register, but you're

>on your own for food. Hotel costs are quoted as about the same for both.

>

>j

>

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June 27, 2000

Leah,

I'm still talking to hubby to see if this is in the budget. I'll push him

to make a decision today. I'd love to go, but the cost, between air fare,

hotel, and conference is considerable.

I looked at the site, and it appears that the 119 per night rooms are

gone, but there are some for a little more (134 I think) at a Holiday Inn

supposedly within walking distance.

Are you still interested?

S

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June 27, 2000

shawna,

you can go to www.ndss.org and click on the conference link......you can then

print out the registration application and send it in......all application

must be in by july 17th......... leah

June 28, 2000

yes i am still interested mary........ if all else fails, i can always drive

back and forth......my doors are open to you......... i have a five bedroom

and we only occupy three......so seriously if you need too, let me

know......not a prob........... my house is everyones house......heheh take

care, leah

July 6, 2000

Judi

I haven 't been posting, but now have time between Danny going to summer

school at 7:30 and n going to different school at 10:30. Do you know

what's happening with the NDSS Conference? I've made travel arrangements

(by train) hotel reservations (Holiday Inn Capitol) and daycare

arrangements for Dan ) Just he and I are going. I really want to meet up

with anyone else who is going to the conference. Anyone out there going?

Bringing your children? Husband?

Jean

(n and Danny's (Ds) mom age 7

July 6, 2000

Hey Jean! Glad to see you may have time to post

again. I know we've all missed your wonderfully

eloquent posts and insights!

Mike and I briefly talked about taking a vacation and

maybe go to both conventions, but nothing ever came of

it. I know Sara Greenberg had talked to the NDSS

folks and they were supposed to get a room for all the

" multiples " families to meet.

Sure wish we were going and could all meet - take lots

of pictures & post 'em!

Have fun-

Judi-Mom to Sam & , 3 1/2, Identical Twins

--- scottjeanroberts <scottjeanroberts@...>

wrote:

> Judi

>

> I haven 't been posting, but now have time between

> Danny going to summer

> school at 7:30 and n going to different school

> at 10:30. Do you know

> what's happening with the NDSS Conference? I've

> made travel arrangements

> (by train) hotel reservations (Holiday Inn Capitol)

> and daycare

> arrangements for Dan ) Just he and I are going. I

> really want to meet up

> with anyone else who is going to the conference.

> Anyone out there going?

> Bringing your children? Husband?

> Jean

> (n and Danny's (Ds) mom age 7

>

__________________________________________________

July 6, 2000

Sorry to say, we, Van Houten's are not going to any conference this

year, too many children to scramble around for child care! And the twins

are only 15 months, and there are TWO of them! Not alot {or any} family

help from either side.........wish we could be going feel like I would

have apsorbed it also better this year than IF we went last

year{sleeping now again} and we live in northern New Jersey, the ride

would not have been too bad..........too sad

Want to hear all about it when you all return!!!

Gail.........Bobby 6, Jillian 3 1/2, and Tara {Ds} 15 months

>

> Judi

>

> I haven 't been posting, but now have time between Danny going to summer

> school at 7:30 and n going to different school at 10:30. Do you know

> what's happening with the NDSS Conference? I've made travel arrangements

> (by train) hotel reservations (Holiday Inn Capitol) and daycare

> arrangements for Dan ) Just he and I are going. I really want to meet up

> with anyone else who is going to the conference. Anyone out there going?

> Bringing your children? Husband?

> Jean

> (n and Danny's (Ds) mom age 7

>

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

> Who invented Gatorade -- and what part did it play in

> winning the1967 Orange Bowl? Find out the true facts at

> 1/6212/2/_/598201/_/962885366/

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

>

> http://DSyndrome.com/Multiples

July 7, 2000

I've decided against going after all. Everyone at home whose opinion I

value thinks it's going to be too much to go alone, just Danny and I,

especially when I'm so unsure of who else will be there. I'm unsure of him

being in daycare while I'm in the conferences, what if he doesn't like the

people, etc....

So, I'll wait until some year when we can go as a family, and maybe bring

along a teenage sitter or something for when and I go into

conferences.

Danny's best friend, , who also has Ds is having his 8th birthday party

(a cookout) tomorrow night. Danny has been invited for a sleepover. We

said yes, considering how well our families know each other, and also having

had successful playdates at our house and at 's. Danny is over the

moon he's so excited.

Jean

n and Danny's(Ds) age 7, mom

April 21, 2001

Thinking about it...have to go to LA in June, not sure if I want to go back

in July.

Wish it was in SF but lucky to have it here in CA.

Judy

April 21, 2001

At 01:32 PM 4/21/2001 EDT, you wrote:

>National Down Syndrome Society Conference

> " One Vision, One Voice "

>July 6 - July 8th

>Westin Hotel, San Diego, CA 1-800-Westin-1 (discount rates)

>Registration

>NDSS at 1-800-221-4602

Anyone going?

I can't promise much, but I " m on the " conference committee. " I can tell you

that Dr. will be there; Dr. Capone isn't sure yet. I can also

tell you that I've arranged to do a " visual strategy " session, that I hope

will involve either some " make and take " or problem solving. Other topics

are teaching reading using visual strategies, the genome stuff (hugely

fascinating), lots on adult issues, and I can't remembver the rest.

j

April 21, 2001

LEAH is going if she gets the scholarship..... and leah is very interested

in the visual strategies stuff too.. make and take is good.,.... i think

more parents get a better feel if they do hands on stuff versus sitting in a

room crowded trying to here and take notes....if you do something, you have

something to actually take home and use as a visual to futher enhance

whatever you might be doing.... i just did a visual thing in my house for

some preschool moms interested in pecs, boardmaker and so on.....but i know

i don't have joan's expertise..... and i really liked dr. patterson, she

inspired me to still have hope and not give up on ms. prissy..... take care

all, leah

>From: Joan <jmedlen@...>

>Reply-

>

>Subject: Re: NDSS Conference

>Date: Sat, 21 Apr 2001 18:10:47 -0700

>

>At 01:32 PM 4/21/2001 EDT, you wrote:

> >National Down Syndrome Society Conference

> > " One Vision, One Voice "

> >July 6 - July 8th

> >Westin Hotel, San Diego, CA 1-800-Westin-1 (discount rates)

> >Registration

> >NDSS at 1-800-221-4602

>

>Anyone going?

>

>I can't promise much, but I " m on the " conference committee. " I can tell you

>that Dr. will be there; Dr. Capone isn't sure yet. I can also

>tell you that I've arranged to do a " visual strategy " session, that I hope

>will involve either some " make and take " or problem solving. Other topics

>are teaching reading using visual strategies, the genome stuff (hugely

>fascinating), lots on adult issues, and I can't remembver the rest.

>

>j

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April 21, 2001

so cancel appt and reschedule....... not that easy i realize.....lmao just a

suggestion...hehe

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

>Reply-

>

>Subject: NDSS Conference

>Date: Sat, 21 Apr 2001 19:41:27 -0800

>

>Now you guys are making me jealous!!! Garry and I seriously considered

>going down for this to San Diego, it's only a 12 hours drove south from

>here. But.....JJ and have dr. appt that week end. Bummer!

>

> & Garry, parents of (10 ds), (9 ds), JJ (7

>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

>adopted.

>

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April 21, 2001

nancy,

is this the doctor that diagnosed jj... dr. leichtman? did iremember

right??????? so long ago that i think you wrote that..something about

meeting him in a hotel? i hope my memory serves me correctly...it's so hard

to keep up with everyone.....lamo

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

>Reply-

>

>Subject: Re: NDSS Conference

>Date: Sat, 21 Apr 2001 19:54:36 -0800

>

>Unfortunitly the doctor will not be in this area(actually 3 hours away) for

>another 6 months. garry and I had the trip all planned too. There are

>about 4 or 5 Navy Lodges in San Diego that we could stay at. Plus we

>still

>know people there we knew 17 years ago when we were stationed there.

>

> & Garry, parents of (10 ds), (9 ds), JJ (7

>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

>adopted.

>

>----------

> >From: " leah leah " <okieleah@...>

> >

> >Subject: Re: NDSS Conference

> >Date: Sat, Apr 21, 2001, 6:47 PM

> >

>

> >so cancel appt and reschedule....... not that easy i realize.....lmao

>just a

> >suggestion...hehe

> >

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

> >>Reply-

> >>

> >>Subject: NDSS Conference

> >>Date: Sat, 21 Apr 2001 19:41:27 -0800

> >>

> >>Now you guys are making me jealous!!! Garry and I seriously considered

> >>going down for this to San Diego, it's only a 12 hours drove south from

> >>here. But.....JJ and have dr. appt that week end. Bummer!

> >>

> >> & Garry, parents of (10 ds), (9 ds), JJ (7

> >>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

> >>adopted.

> >>

> >

> >_________________________________________________________________

> >Get your FREE download of MSN Explorer at http://explorer.msn.com

> >

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

> >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.

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

> >

April 21, 2001

Joan,

I'll have to lobby really hard to go to this one-only about 4 hours from

us here in Vegas.

I'll let you know

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April 21, 2001

nancy,

i think personally you have to take a little of this and a little of that

from each doctor and use to your child's advantage. we have one doctor i

can't stand but he can write awesome letters to the school and doesn't

hesitate to do so, so i put up with his ignorance and arrogance...... he

still looks good on paper...lmao good luck at doctors.......leah

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

>Reply-

>

>Subject: Re: NDSS Conference

>Date: Sat, 21 Apr 2001 20:16:35 -0800

>

>Yes Leah, your memory is good. He dx'd JJ autism 2 years ago, and last

>year

>he dx'd his Celiac Disease. Not everyone will agree with him and some of

>the things he recommends but they have helped us.

>

> & Garry, parents of (10 ds), (9 ds), JJ (7

>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

>adopted.

>

_________________________________________________________________

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April 21, 2001

nancy,

i think personally you have to take a little of this and a little of that

from each doctor and use to your child's advantage. we have one doctor i

can't stand but he can write awesome letters to the school and doesn't

hesitate to do so, so i put up with his ignorance and arrogance...... he

still looks good on paper...lmao good luck at doctors.......leah

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

>Reply-

>

>Subject: Re: NDSS Conference

>Date: Sat, 21 Apr 2001 20:16:35 -0800

>

>Yes Leah, your memory is good. He dx'd JJ autism 2 years ago, and last

>year

>he dx'd his Celiac Disease. Not everyone will agree with him and some of

>the things he recommends but they have helped us.

>

> & Garry, parents of (10 ds), (9 ds), JJ (7

>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

>adopted.

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

April 21, 2001

Unfortunitly the doctor will not be in this area(actually 3 hours away) for

another 6 months. garry and I had the trip all planned too. There are

about 4 or 5 Navy Lodges in San Diego that we could stay at. Plus we still

know people there we knew 17 years ago when we were stationed there.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: " leah leah " <okieleah@...>

>

>Subject: Re: NDSS Conference

>Date: Sat, Apr 21, 2001, 6:47 PM

>

>so cancel appt and reschedule....... not that easy i realize.....lmao just a

>suggestion...hehe

>

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

>>Reply-

>>

>>Subject: NDSS Conference

>>Date: Sat, 21 Apr 2001 19:41:27 -0800

>>

>>Now you guys are making me jealous!!! Garry and I seriously considered

>>going down for this to San Diego, it's only a 12 hours drove south from

>>here. But.....JJ and have dr. appt that week end. Bummer!

>>

>> & Garry, parents of (10 ds), (9 ds), JJ (7

>>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

>>adopted.

>>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com

>

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

>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.

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

>

April 21, 2001

Yes Leah, your memory is good. He dx'd JJ autism 2 years ago, and last year

he dx'd his Celiac Disease. Not everyone will agree with him and some of

the things he recommends but they have helped us.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

April 22, 2001

Hi ! Wanted to share this , many of you are aware of some of this

information .

This morning was our local Autism Society Meeting, the discussion was

on Communication . My favorite was a Go Board W/Icon Holders (9) . Of

course this could be done with construction paper , laminated pec

pictures , velcro and etc.

Suggested Assistive Technology for Individuals with Autism :

Voice output

Picture symbols

Sequence / cue cards

Touch screen

Modified keyboard

Switch access

Sign language

Who to contact for Information /Evalution :

Public school

Private Practice (Rehab, PT,OT,SLP/Aud)

University Clinics

Hospitals Clinics

Rehabilitation Centers

Useful internet sites :

www.rehabtool.com - provide information on AT devices and use also

gives comprehensive product information and direct links to vendors.

www.augcom.com - a good link for augmentative communication devices .

www.autism-info.com - good information concerning AT and useful

links .

Routines are an important aspect of working with individuals with

autism . Therefore incorporating AT devices within the routines

increases the opportunities for communication .

Settin up the environment : Introducing the activity (i.e.dressing )

Adding visual supports (pictures ,

objects ,printed word with AT device )

Repeat activity to establish routine .

Wait for initiation from individual .

The importance of using AT is to incorporate into all opportunties of

social interaction to communicate and participate in educational,

daily living events .

As most of these Assistive Technology are expensive and if needed at

home . Sometimes it could be claim through Insurance as Durable

Medical Equipment .

Language Development Software for Individuals with Autism -

Level 1 : Individuals with Low-level Language Skills.

Level 2 : Individuals with Emerging Language Skills .

Level 3 : Individuals with Moderate-Level Language Abilities .

Level 4 : Individuals with Higher-Level Language Skills .

Websites :

www.dimensionsspeech.com

Vendor Information :

www.laureatelearning.com

www.learningfundamentals.com

www.attainment-inc.com

www.mayerjohnson.com

www.silverlingmm.com

A big plus discussed was Parent Training -Parent training can occur

at any location . The committee should have some assessment of parent

skills needed to implement the parent part of educational

responsibilites . If the parents need to develop skills , then the

committee determines how those needs will be met . Some districts

choose to finance attending meetings or conferences. Some districts

create and offer training at a district level . Some districts choose

to provide consultants that can provide the needed training . Again ,

this is an individual decision based on individual needs and may or

may not take the form of what is typically provided to parents .

An example was given from a High School Teacher , there are alot of

young adult with special needs that could not talk . Due to parents

not following through at home with communication training .

The best communication suggestion was the one and only PECS .

Interactive visual was the winner .

April 22, 2001