[Guest guest]

we have them for nathan too, one for each vehicle, very nice, no more carrying

him half the parking lot etc. shawna

To: @...: liz.desantis@...: Tue, 26 Jun 2007

16:40:52 -0400Subject: Re: Re:

I have a Handicap Parking Placard because of Miss Tori (a/k/a Miss

Stop/Drop/Flop) Re: Re: No, I don't, but I have thought about

it. Doesn't seem entirely right considering my girls can walk, but with Katy

unwilling in some instances, I do sometimes wish I had that handicap thingy. Do

you have one?mum592001 wrote: OMG , you have the

twins, the thought of not one but two who you have to consider. I can relate to

those emergency restroom urges. Hate those moments. I understand what you mean

on the rushing in and out errands. We do always have to always work around so

much. Thank goodness all went well and once again with the " not alone feeling "

with what you have shared. I really hope you do find something that will work

for your little ones. Do you at least have a handicap placecard?

Irma,18,DS/ASD>> Wow, I had a similar instance when my twins were

babies, I was out running errands, the girls were sleeping in their carseats,

and I had to use the bathroom. I drove to my house, pulled all the way up into

my garage, and went to leave the car running while I went to the bathroom, which

is just inside the house door of the garage. But a lady's car had just been

stolen at our local WalMart with her baby in the back, and I was plagued with

fear about this, so I took off my clicker, and leaving the ignition on, I locked

the van. Of course could not reopen. Called a locksmith in a panic, and he was

there in a matter of minutes, which is apparently a policy whenever there is a

child locked in a car. He said he would have to call the police to report it

though, and I begged him not to, and he obliged. There was also no charge for

the service. > > Now my girls are 7, and recently we were running to Walgreens.

The kids were in the back watching a movie, and my non-DS twin asked if they

could wait in the car. I said yes, but only if you stay in your seatbelt until I

get back, at which time I will need you to unlock the car for me. So I left it

on with the doors locked, knowing I would not be able to unlock it myself. The

whole time I was in the store, which was only a minute or two, I was freaking

out thinking what if she somehow knocked the car into gear, and the doors are

locked, so no one can jump in and help them, and, and. and....... and I will not

do that again. I hate how much work it is to take them into a store for a one

minute thing, but there just isn't another option. Katy won't walk for long, and

at 55ish pounds, it is exhausting lifting her into a cart, or carrying her, or

setting up her big ole special needs stroller, just to run in to pick up some

pictures or something, but that's just the way> it is.>[Non-text portions of

this message have been removed][Non-text portions of this message have been

removed]

[Guest guest]

Laurie,

Yes they are still little. They will be 3 the 30th of next month. My husband

and I took them to church this morning and they were so GOOD...Will did start to

cry when he saw my sister that was here yesterday but it was just for a few

seconds. He laid down on the pew beside me and lay there for a little while and

then went to sleep. I had to wake him up when church was over. Matt went to

sleep too, but Paw Paw woke him up.).

Thanks,

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

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.

[Guest guest]

Hah. My middle, highly gifted son chewed on his shirt collars too. Normal is a

very thin line.

Beth, mom to , age 7, with DS, autism, and a leukemia survivor; also mom to

, 14, and , 11

<<First, she chews on her tshirt collar.>>

Hi, Everyone........this brought a chuckle. My oldest 'normal' kid use

to do this all the time that age!!! Can't give you any advice except get

her a chew toy and put a bib on her for the slobbering and drooling!!!. Thank

goodness, he outgrew it!!!

Take care, Everyone.

Margaret

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[Guest guest]

In a message dated 9/29/2007 8:24:07 A.M. Eastern Daylight Time,

mfroof@... writes:

Gareth and Maddie both were good at that!!!

Take care, Everyone.

Margaret

he he he....Yep.

, Maddie's sensory integration therapist used to build mountains

for her during therapy. She'd take her gigantic ball and throw a gigantic

mat over it, with the ball right in the center. Maddie adored it. You

know, I remember looking into a method of working with children with autism,

called the method. The concept was that since so many kids with

autism like to climb, or be up high, that therapists would work with kids on

these contraptions up in the air. I'm not explaining this well. Here is a

blurb from their site.

<<The Method uses two major strategies to restore typical

developmental progressions: One involves the transformation of children's

aberrant

systems (lining up blocks, driven reactions to stimuli, etc.) into functional

behaviors; the other is the systematic and repetitive introduction of

developmentally relevant activities involving objects and people. Activities are

chosen

to fill developmental gaps. This process is facilitated by narrating the

children's actions while they are elevated 2.5 feet above the ground on an

Elevated Square and similar challenging structures. Elevating the children

enhances

sign-word guidance of behavior and body-other awareness as well as

motor-planning and social-emotional contact. It also helps children transition

from

one engaging object or event to another or from object involvement to

representational play. >>

Donna

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[Guest guest]

In a message dated 10/1/2007 7:58:12 P.M. Eastern Daylight Time,

christine1223@... writes:

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/_

(http://groups.yahoo.com/group/)

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

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[Guest guest]

How's about something like this with DOWNTISM across the center?

Liz

What if we take a poll to see what people would think? Maybe narrow it

down to a few choices? I personally would love a magnet or sticker and

a bracelet like the awareness ones. Maybe they should look the same?

If we did a blue and yellow puzzle pieces together with Downtism

written on it on one side then the other Awareness? Or Down

Syndrome-Autism Awareness? Both a ribbon and bracelet could be

intertwined like that right?

[Guest guest]

Shoot! It didn't go thru! I will put it on the site!

What if we take a poll to see what people would think? Maybe narrow it

down to a few choices? I personally would love a magnet or sticker and

a bracelet like the awareness ones. Maybe they should look the same?

If we did a blue and yellow puzzle pieces together with Downtism

written on it on one side then the other Awareness? Or Down

Syndrome-Autism Awareness? Both a ribbon and bracelet could be

intertwined like that right?

[Guest guest]

Hey, I put the suggestion for the ddx ribbon up on the site.....Check it out!

What if we take a poll to see what people would think? Maybe narrow it

down to a few choices? I personally would love a magnet or sticker and

a bracelet like the awareness ones. Maybe they should look the same?

If we did a blue and yellow puzzle pieces together with Downtism

written on it on one side then the other Awareness? Or Down

Syndrome-Autism Awareness? Both a ribbon and bracelet could be

intertwined like that right?

[Guest guest]

i got a dumb question, but how do i go to the site to see it??

Liz D wrote:

>

> Hey, I put the suggestion for the ddx ribbon up on the site.....Check

> it out!

>

>

> What if we take a poll to see what people would think? Maybe narrow it

> down to a few choices? I personally would love a magnet or sticker and

> a bracelet like the awareness ones. Maybe they should look the same?

> If we did a blue and yellow puzzle pieces together with Downtism

> written on it on one side then the other Awareness? Or Down

> Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> intertwined like that right?

>

>

>

[Guest guest]

No dumb question... Scroll to the bottom of this page, and click on Photos....

>

> What if we take a poll to see what people would think? Maybe narrow it

> down to a few choices? I personally would love a magnet or sticker and

> a bracelet like the awareness ones. Maybe they should look the same?

> If we did a blue and yellow puzzle pieces together with Downtism

> written on it on one side then the other Awareness? Or Down

> Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> intertwined like that right?

>

>

>

[Guest guest]

Just a thought, but because Autism uses the puzzle pieces and it is so well

known, it might be copyrighted. We should make sure that if we are using the

Autism puzzles, that we can legally.

Holly

What if we take a poll to see what people would think? Maybe narrow it

down to a few choices? I personally would love a magnet or sticker and

a bracelet like the awareness ones. Maybe they should look the same?

If we did a blue and yellow puzzle pieces together with Downtism

written on it on one side then the other Awareness? Or Down

Syndrome-Autism Awareness? Both a ribbon and bracelet could be

intertwined like that right?

[Guest guest]

I can check that out!

Liz

What if we take a poll to see what people would think? Maybe narrow it

down to a few choices? I personally would love a magnet or sticker and

a bracelet like the awareness ones. Maybe they should look the same?

If we did a blue and yellow puzzle pieces together with Downtism

written on it on one side then the other Awareness? Or Down

Syndrome-Autism Awareness? Both a ribbon and bracelet could be

intertwined like that right?

[Guest guest]

i checked out the photo. i think you should get rid of the puzzle piece

in the center, it automatically looks like its for Autism. Are the

colors for ds blue? if so, i think you should make half the magnet all

puzzles with the autism colors and the other half the blue and have

Downtism written on it. does that make any sense? in other words, one

side all blue and the other all puzzle pieces with Downtism written on

it. my husband is ragging on me because i told him a long time ago the

downtism was stupid but mostly i think i was worried what other people

would think. he always told our friends " were going to get a magnet

that says Downtism " and he would say " people need to get down with the

Downtism " hes a very silly person

Liz D wrote:

>

> Shoot! It didn't go thru! I will put it on the site!

>

>

> What if we take a poll to see what people would think? Maybe narrow it

> down to a few choices? I personally would love a magnet or sticker and

> a bracelet like the awareness ones. Maybe they should look the same?

> If we did a blue and yellow puzzle pieces together with Downtism

> written on it on one side then the other Awareness? Or Down

> Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> intertwined like that right?

>

>

>

[Guest guest]

also, im not sure of Downtism anymore because to everyone else outside

of our world may not get it. I think if we say Autism/Down Syndrome

Awareness would be better. I dont know that also doesnt seem like the

two co-exist, huh? I mean that sounds like the two exist but not at the

same time whereas downtism does.

Have you guys been hearing on the news lately about children and

cold/cough medicines? They are saying now that it may be harmful to

give a child under 2 decongestants and children under 6 anithistamines.

Has anyone else heard the part about the child being under 6 not to

give certain medicatons to? i may not be making any sense right now, i

am so tired since we were up at 4am, im going to lay in bed and set my

dvr once again for CSI. I hate it when all my shows start at 9! cant

make it to ten anymore. Im rambling on..........good night to all my

downtism supporters.

christine wrote:

>

> i checked out the photo. i think you should get rid of the puzzle piece

> in the center, it automatically looks like its for Autism. Are the

> colors for ds blue? if so, i think you should make half the magnet all

> puzzles with the autism colors and the other half the blue and have

> Downtism written on it. does that make any sense? in other words, one

> side all blue and the other all puzzle pieces with Downtism written on

> it. my husband is ragging on me because i told him a long time ago the

> downtism was stupid but mostly i think i was worried what other people

> would think. he always told our friends " were going to get a magnet

> that says Downtism " and he would say " people need to get down with the

> Downtism " hes a very silly person

>

> Liz D wrote:

> >

> > Shoot! It didn't go thru! I will put it on the site!

> >

> >

> > What if we take a poll to see what people would think? Maybe narrow it

> > down to a few choices? I personally would love a magnet or sticker and

> > a bracelet like the awareness ones. Maybe they should look the same?

> > If we did a blue and yellow puzzle pieces together with Downtism

> > written on it on one side then the other Awareness? Or Down

> > Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> > intertwined like that right?

> >

> >

> >

[Guest guest]

Hi all just wanted to share with you family photos i finally posted.

please check them out. They will be under Haylee.

christine wrote:

>

> i got a dumb question, but how do i go to the site to see it??

>

> Liz D wrote:

> >

> > Hey, I put the suggestion for the ddx ribbon up on the site.....Check

> > it out!

> >

> >

> > What if we take a poll to see what people would think? Maybe narrow it

> > down to a few choices? I personally would love a magnet or sticker and

> > a bracelet like the awareness ones. Maybe they should look the same?

> > If we did a blue and yellow puzzle pieces together with Downtism

> > written on it on one side then the other Awareness? Or Down

> > Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> > intertwined like that right?

> >

> >

> >

[Guest guest]

Downtism is cute, but people won't get it. For awareness I'd go with Down

syndrome-Autism Awareness.

JMHO,

Beth

>

> What if we take a poll to see what people would think? Maybe narrow it

> down to a few choices? I personally would love a magnet or sticker and

> a bracelet like the awareness ones. Maybe they should look the same?

> If we did a blue and yellow puzzle pieces together with Downtism

> written on it on one side then the other Awareness? Or Down

> Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> intertwined like that right?

>

>

>

[Guest guest]

Cute. The Ampersand (and sign) behind the words is neat. How would we ribbon it?

I'm tired; sorry. Maybe I'm not making sense or haven't read enough of the

messages.

Beth

>

> What if we take a poll to see what people would think? Maybe narrow it

> down to a few choices? I personally would love a magnet or sticker and

> a bracelet like the awareness ones. Maybe they should look the same?

> If we did a blue and yellow puzzle pieces together with Downtism

> written on it on one side then the other Awareness? Or Down

> Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> intertwined like that right?

>

>

>

[Guest guest]

You know, I think you are right. I totally love the Downtism, but

what does everyone else think? I really think we should do a poll,

can that be done on the site? And this would be a great way to at

least start spreading the word, ya know??

> >

> > Shoot! It didn't go thru! I will put it on the site!

> >

> >

> > What if we take a poll to see what people would think? Maybe

narrow it

> > down to a few choices? I personally would love a magnet or

sticker and

> > a bracelet like the awareness ones. Maybe they should look the

same?

> > If we did a blue and yellow puzzle pieces together with

Downtism

> > written on it on one side then the other Awareness? Or Down

> > Syndrome-Autism Awareness? Both a ribbon and bracelet could be

> > intertwined like that right?

> >

> >

> >

[Guest guest]

In a message dated 10/22/2007 1:21:57 P.M. Eastern Daylight Time,

megsoracco@... writes:

Heck, I am

considering it myself. I have done it! I just think it would be so

much less of a hassle for her and with everything going on, it would

be better for her I think. Plus in 9 years, who know what will be

available. But, I do worry about it. Especially with sexual abuse etc.

Trisha is 15 and has been having her period for about 4 years now. We have

not put her on the pill or other forms of BC mainly because with her not

able to tell us if something is not right with her body how would we know until

it might be too late that the pills are causing things like heart

palpitations, dizziness or any other possible side effect. The sad part that

even if

we provide BC for our children it won't stop the possible sexual abuse only

the possible outcome of the abuse. What is the answer? I don't have a clue at

this moment, I only know that with a history of heart defect, I'm not sure

what is the safest mode of BC to use and while I do keep an open mind I also

have to consider the possible side effects some of which can be life

threatening. Her having her periods are not the issue for me, that is a

natural

part of life even if child bearing is not the goal. It's making sure whatever

I

do, I do it with her best interest at heart and with the least amount of

risk possible. Until she can communicate if something is wrong that we cannot

visually see I'm leery about any and all meds that have risks of stroke, heart

attacks etc. JMHO

Carol

Trishasmom

She isn't typical, She's Trisha!

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[Guest guest]

My one caveat on LRE - look for the best fit for your daughter. You knw

your daughter best. If she needs to be in a more restrictive environment to

be comfortable enough to learn then THAT will be the LRE for her.

>

> <<I don't think I have heard of a newfie? I will have to google that and

>

> find out about that breed. I have

> heard that the dx should be autism first not ds but have not fully

> comprehended

> that. I was not aware that she could get more services based on this but

> it

> makes sense. >>

>

> Hi, Everyone...........newfie is short for Newfoundlands. They are

> 120-150 # cuddly bears. Very laid back, calm, gentle, and very smart. They

>

> make great door mats!!! When Gareth was younger, ours would follow him,

> too,

> and be in the same room with him. The only down side, they have to be

> brushed regularly.

> As for the schooling.....some of us have been in districts from H#** and

> others are very good districts. Some you have to fight for everything

> while

> others are two steps ahead of the parents in 'giving'. What ever you

> decide, DO

> NOT give up on the academics. ALWAYS push for academics!!! ALWAYS push for

>

> the least restrictive class for your daughter.

> Take care, Everyone.

> Margaret

>

> ************************************** See what's new at

> http://www.aol.com

>

>

[Guest guest]

In a message dated 10/26/2007 4:45:21 P.M. Eastern Daylight Time,

mfroof@... writes:

Hi, Everyone....Hi, Everyone....<WBR>...I always thought

autism....opposite of Donna. Anyways, it could be from both

Yep, could be. I just know the kids at Maddie's school who have autism,

don't do the drop/flop thing. And I know that it's been a topic on the DS

listserv ever since I've been a member back in the nineties. That and the

wandering, which Joan actually did an issue on in Disability Solutions quite a

while back. Isn't it something how all the behaviors associated to these

conditions are so similar, yet people think of them as night and day.

Donna

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[Guest guest]

Elie also had flop and drop on the right leg always. This past year (he is

21), a new PT found that his ham strings and achilles tendon were shortened

.. After being fit with short leg braces (up to the knee) and a year of PT,

yesterday he walked a 2 mile and hour treadmill for 35 minutes - without

braces!!!

Maybe the flop and drop is physical and then becomes learned behavior.

>

> <<I don't want to rely ONLY On a stroller for her, cause I want those

> leg

> muscles to get developed.>>

>

> Hi, Everyone.......I always thought the flop and drop was the

> autism....opposite of Donna. Anyways, it could be from both. We found out

> when

> Gareth was 15, that his right hip had been almost completely eroded from

> weak

> muscles causing the hip bone to grind against the femur head. That is

> definitely

> from the DS. BUT....the autism is what made the dx so difficult due to the

>

> high pain tolerance of autistic kids. When Gareth hurts, I know there is

> something wrong. It wasn't until the hip was so far gone that he

> experienced

> nerve damage that we found out about it. That was probably his reason for

> all

> those years of 'flop and drop'!!!

> Take care, Everyone.

> Margaret

>

> ************************************** See what's new at

> http://www.aol.com

>

>

[Guest guest]

yeah Donna, the kids with autism just run, really fast. I think the low

muscle tone plays a big role in the stop, drop and flop for our kids. I don't

think I really understood how it fatigued to walk or even stand for long

periods due to the muscle tone issue.

Karyn

Posted by: " duffey48@... " _duffey48@... _

(mailto:duffey48@...?Subject= Re:%20) _duffey48 _

(http://profiles.yahoo.com/duffey48) Fri

Oct 26, 2007 3:36 pm (PST)

In a message dated 10/26/2007 4:45:21 P.M. Eastern Daylight Time,

_mfroof@..._ (mailto:mfroof@...) writes:

Hi, Everyone....Hi, Everyone...Mega<WBR>...I always thought

autism....opposite of Donna. Anyways, it could be from both

Yep, could be. I just know the kids at Maddie's school who have autism,

don't do the drop/flop thing. And I know that it's been a topic on the DS

listserv ever since I've been a member back in the nineties. That and the

wandering, which Joan actually did an issue on in Disability Solutions quite

a

while back. Isn't it something how all the behaviors associated to these

conditions are so similar, yet people think of them as night and day.

Donna

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[Guest guest]

Hi Margaret and everyone

I live in Colorado, and would love to talk with anyone who might live close.

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[Guest guest]

Hi

thanks so much. Sometimes there is a ray of hope when you can't find one.

You were my ray of hope today. Can't imagine life without meds. Yikes.

However, hopefully someday we will get there too. Eb will pick everything and

I

do mean everything up from the carpet. She will find what the vacuum

doesn't, and then usually eat it.

I am so happy I found this group. I have been living in my own little world

and am getting ready to adopt again.

I live in Colorado.

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