Question

[Guest guest]

Just throwing in the pot...that my son has no other diagnosis that would

affect speech...and he did not communicate in sentences until he was about 5

years old. I WISH I would have used more sign. His teachers did, and he was

happier at school! I can't really chime in on when you let more sign go...I

think its going to be an individual decision...

Angel

Mom to 15 mds/hirschsprung's

and 5 other kids..ha.

In a message dated 7/29/2008 10:19:17 A.M. Mountain Daylight Time,

chopkins@... writes:

Hi...this is where i get really confused. I have posted questions like

t his before. My daughter is only 9 mths old and i've asked b/f if MDS

children truly have so many communication problems. I recieved

responses that most children that do usually have a separate diagnosis

along with MDS. So i'm wondering if your daughter also has a seperate

diagnosis as well? My daughter (Macie) babbles, not a lot, but

screeches, and hollers and does da-da when she wants to. Did you

daughter babble on " target " or did she ever?

Camisha

>

> My daughter is starting to really communicate these days. Not in

full

> sentences, but if she want a banana, she will come up to me, tap me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like

I

> said, no sentences but lots of letting us know what she wants through

> words. My question is, at what age did you all with older ones let go

> completely of the sign, and let your child work more on the words?

Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your thoughts.

> Diane

>

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[Guest guest]

My daughter is starting to really communicate these days. Not in full

sentences, but if she want a banana, she will come up to me, tap me,

and then say nana. If she needs to go potty she will say pee pee.

Some of what she is saying is all so new this summer. It seems like

new words are popping out each day. And the part that is surprising

me is how intentional her communication is. She is 3 and 1/2. Like I

said, no sentences but lots of letting us know what she wants through

words. My question is, at what age did you all with older ones let go

completely of the sign, and let your child work more on the words? Or

did you? I find us moving further and further from the signing, and

more and more closer to the words. Would love to hear your thoughts.

Diane

[Guest guest]

Angel, That is great information. Did you wish it cuz he was

frustrated until the sentences came, or for another reason? Thanks

for your input. Diane

> >

> > My daughter is starting to really communicate these days. Not

in

> full

> > sentences, but if she want a banana, she will come up to me,

tap me,

> > and then say nana. If she needs to go potty she will say pee

pee.

> > Some of what she is saying is all so new this summer. It seems

like

> > new words are popping out each day. And the part that is

surprising

> > me is how intentional her communication is. She is 3 and 1/2.

Like

> I

> > said, no sentences but lots of letting us know what she wants

through

> > words. My question is, at what age did you all with older ones

let go

> > completely of the sign, and let your child work more on the

words?

> Or

> > did you? I find us moving further and further from the

signing, and

> > more and more closer to the words. Would love to hear your

thoughts.

> > Diane

> >

>

>

>

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

>

> Become a member of IMDSA today at http://www.imdsa.org

> *******************************************************

> Purchase your MDS awareness bracelet

> today!http://www.imdsa.org/Awareness/aware.htm

>

*********************************************************************

*****

> Contact IMDSA Today at:

> IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-

LINK

>

*********************************************************************

> Share your story today! http://www.mosaicdownsyndrome.com

> *********************************************************

> To unsubscribe from this list, send e-mail to:

> MosaicDS-unsubscribeegroups

> *************************************************

> To visit the e-group website go to:

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

> *************************************************Yahoo! Groups

Links

>

>

>

>

>

>

>

>

> **************Get fantasy football with free live scoring. Sign up

for

> FanHouse Fantasy Football today.

> (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

>

>

>

[Guest guest]

Diane

When the child has mastered the word completely they usually just drop the

sign and when they begin communicating their needs enough with words that they

are satisfied, they automatically quit signing. Tim quit signing around 4 or 5.

I wouldn't worry about it though.... it is a good thing that they know how to

sign! Most people wish they had the ability!

I promise, the signing definitely is increasing the vocabulary!

Kristy

mblessed5t wrote:

My daughter is starting to really communicate these days. Not in full

sentences, but if she want a banana, she will come up to me, tap me,

and then say nana. If she needs to go potty she will say pee pee.

Some of what she is saying is all so new this summer. It seems like

new words are popping out each day. And the part that is surprising

me is how intentional her communication is. She is 3 and 1/2. Like I

said, no sentences but lots of letting us know what she wants through

words. My question is, at what age did you all with older ones let go

completely of the sign, and let your child work more on the words? Or

did you? I find us moving further and further from the signing, and

more and more closer to the words. Would love to hear your thoughts.

Diane

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

http://www.mosaicmoments.today.com

[Guest guest]

I CAN! (Unforunately) NE GA RESA did that to me. This was the school!

I am not a speech therapist and I have no formal training as one;

however, I have 5 years research under my belt with this (neural

pathways) and I am a nurse and I recommend that simultanous signed

language and verbal speech be used. What the child does not catch

with verbal speech, he/she will catch with the signed language.

Afterall, aren't the " professionals " recommending sign language

for " all " babies as a mode of preverbal communication? <br>

The speech therapist is " hoping " that he/she will " eventually " drop

the signed language and " just be verbal " ; supporters of this belief

think that they won't talk if they sign. I " know " they will do both

if and when they can. <br>

For us, I aspire that we " all " will be fluent in two languages and

how " smart " is that? Likewise, how dumb is it to just " drop " a

language that you have begun to learn and be proficient in? That does

not sound right, does it? And my point precisely is this>>> " If it

does not sound right to drop the signed language, and the parent

feels as if it is wrong to do so, then you better stick with it. The

parent usualy knows what is best for their child. " <br>

My humble suggestion would be to locate a supportive speech

therapist, who incorporates the way you view things. (This method

also works with choosing doctors.)<br>

Stick with both verbal and signed language both. Your child will be

smarter and you will be happier. (And if you want to " light up " all

areas of the brain at once, then incorporate " music " into the

language. Music on an MRI has been shown to illuminate virtually all

areas of the brain.)<<I can provide the research if you want it? ---I

hope I have helped you. ALL the Best....

<br> P.S> I know I probably responded in the wrong place, under

Kristy's post, but I was in a hurry. Sorry.

> My daughter is starting to really communicate these days. Not in

full

> sentences, but if she want a banana, she will come up to me, tap

me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like

I

> said, no sentences but lots of letting us know what she wants

through

> words. My question is, at what age did you all with older ones let

go

> completely of the sign, and let your child work more on the words?

Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your

thoughts.

> Diane

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa.org

> http://www.mosaicmoments.today.com

>

>

[Guest guest]

Ok. I'm gonna try this AGAIN! This is the third time I've tried to post this

today. *Crossing fingers and toes while clicking send*

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: , - Kenton County

Sent: Tue 7/29/2008 2:12 PM

To: 'MosaicDS '

Subject: RE: Question

My last post did not come through for some reason, so I'm pasting it here.

Signing does not delay spoken language, but acts as a bridge to spoken language.

Signing is communication; it is language. Consider this. Would you rather have

your child sign " milk, " or throw a tantrum - and throw objects - because she

cannot get across to you what she wants/needs? As for when to stop, why stop?

It's not going to harm her in any way to be able to sign. It can only help. It

sounds like the signing has already been a bridge for your daughter to be able

to speak. As she learns more words, she may not use the signs as much, but I

reiterate that it will not hurt her to be able to sign, or for you to sign with

her. Do you think Deaf parents of hearing children stop signing with their

children when the children learn to talk? No, they keep on signing and the

children are bilingual.

Also, I'm with Kristy. I can't imagine a speech therapist telling you not to

sign with your child! The research is out there and the speech therapists are

usually the first ones to encourage parents to sign with their children. I

honestly wonder how old this person is that she would not know the benefits of

signing for all children. My goodness, PBS even has an entire show devoted to

teaching children to sign!

A.

Special Educator

Simon Kenton High School

(859)960-0348

cynthia.jones@...

" Deaf People Can Do Anything Except Hear! " (I. King Jordan)

Confidentiality Notice - This email is intended only for the person to whom it

is addressed and may contain confidential information. Any unauthorized review

is prohibited. If you are not the intended recipient, kindly contact the sender

by reply email and destroy all copies of the original message. If you are the

intended recipient, but do not wish to receive communication through this

medium, please advise the sender immediately.

________________________________

From: MosaicDS [mailto:MosaicDS ] On Behalf Of

Kristy Colvin

Sent: Tuesday, July 29, 2008 2:06 PM

To: MosaicDS

Subject: Re: Question

I just can't imagine a ST telling you not to sign! I would wonder where this ST

has trained at. I thought that all ST's understood the benefits of signing!

Also, research has shown that babies who are taught sign language have much

better communication skills and less frustration than babies who aren't. (these

are babies without speech delays!)

Keep signing!!!

Kristy

Grovers <diane_grover@... <mailto:diane_grover%40bellsouth.net> >

wrote:

Kristy, This make complete sense. I do still sign with her words that she has

been saying too. So it is good for us to drop those, and keep up with the

others. THANK you so much for this. Now I know what I have to do. We have not

stopped learning new ones yet, and I do think they are helping her with learning

words. I always get hung up on the ST telling us to not sign at all, and I start

to wonder if we are doing harm. I know it is one person's opinion, but I am glad

to hear others. Thanks to all for sharing. Diane

-------------- Original message from Kristy Colvin <kristy@...

<mailto:kristy%40imdsa.org> >: --------------

Diane

When the child has mastered the word completely they usually just drop the sign

and when they begin communicating their needs enough with words that they are

satisfied, they automatically quit signing. Tim quit signing around 4 or 5. I

wouldn't worry about it though.... it is a good thing that they know how to

sign! Most people wish they had the ability!

I promise, the signing definitely is increasing the vocabulary!

Kristy

mblessed5t <diane_grover@... <mailto:diane_grover%40bellsouth.net> >

wrote:

My daughter is starting to really communicate these days. Not in full

sentences, but if she want a banana, she will come up to me, tap me,

and then say nana. If she needs to go potty she will say pee pee.

Some of what she is saying is all so new this summer. It seems like

new words are popping out each day. And the part that is surprising

me is how intentional her communication is. She is 3 and 1/2. Like I

said, no sentences but lots of letting us know what she wants through

words. My question is, at what age did you all with older ones let go

completely of the sign, and let your child work more on the words? Or

did you? I find us moving further and further from the signing, and

more and more closer to the words. Would love to hear your thoughts.

Diane

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

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

http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/>

[Guest guest]

It was also described to me that signing helps to build more connections in the

brain and helps with brain development even if they do forget what the signs are

a few years from now. That is what we parents are trying to to is build as many

connections in those heads as we can! I know that Ollie has started to do the

sign and say the word and then drops the sign and just uses the words. Signing

gives them an opportunity to get their voices heard before they can make the

words.

________________________________

> To: .@...; MosaicDS

> From: cynthia.jones@...

> Date: Tue, 29 Jul 2008 17:57:59 -0400

> Subject: RE: Question

>

>

> Ok. I'm gonna try this AGAIN! This is the third time I've tried to post this

today. *Crossing fingers and toes while clicking send*

>

> A.

> Special Educator

> Simon Kenton HS

> 11132 Madison Pk.

> Independence, KY 41051

> (859)960-0348

> cynthia.jones@...

>

> ________________________________

>

> From: , - Kenton County

> Sent: Tue 7/29/2008 2:12 PM

> To: 'MosaicDS '

> Subject: RE: Question

>

> My last post did not come through for some reason, so I'm pasting it here.

>

> Signing does not delay spoken language, but acts as a bridge to spoken

language. Signing is communication; it is language. Consider this. Would you

rather have your child sign " milk, " or throw a tantrum - and throw objects -

because she cannot get across to you what she wants/needs? As for when to stop,

why stop? It's not going to harm her in any way to be able to sign. It can only

help. It sounds like the signing has already been a bridge for your daughter to

be able to speak. As she learns more words, she may not use the signs as much,

but I reiterate that it will not hurt her to be able to sign, or for you to sign

with her. Do you think Deaf parents of hearing children stop signing with their

children when the children learn to talk? No, they keep on signing and the

children are bilingual.

>

> Also, I'm with Kristy. I can't imagine a speech therapist telling you not to

sign with your child! The research is out there and the speech therapists are

usually the first ones to encourage parents to sign with their children. I

honestly wonder how old this person is that she would not know the benefits of

signing for all children. My goodness, PBS even has an entire show devoted to

teaching children to sign!

>

> A.

>

> Special Educator

>

> Simon Kenton High School

>

> (859)960-0348

>

> cynthia.jones@...

>

> " Deaf People Can Do Anything Except Hear! " (I. King Jordan)

>

> Confidentiality Notice - This email is intended only for the person to whom it

is addressed and may contain confidential information. Any unauthorized review

is prohibited. If you are not the intended recipient, kindly contact the sender

by reply email and destroy all copies of the original message. If you are the

intended recipient, but do not wish to receive communication through this

medium, please advise the sender immediately.

>

> ________________________________

>

> From: MosaicDS [mailto:MosaicDS ] On Behalf Of

Kristy Colvin

> Sent: Tuesday, July 29, 2008 2:06 PM

> To: MosaicDS

> Subject: Re: Question

>

> I just can't imagine a ST telling you not to sign! I would wonder where this

ST has trained at. I thought that all ST's understood the benefits of signing!

Also, research has shown that babies who are taught sign language have much

better communication skills and less frustration than babies who aren't. (these

are babies without speech delays!)

>

> Keep signing!!!

> Kristy

>

> Grovers wrote:

> Kristy, This make complete sense. I do still sign with her words that she has

been saying too. So it is good for us to drop those, and keep up with the

others. THANK you so much for this. Now I know what I have to do. We have not

stopped learning new ones yet, and I do think they are helping her with learning

words. I always get hung up on the ST telling us to not sign at all, and I start

to wonder if we are doing harm. I know it is one person's opinion, but I am glad

to hear others. Thanks to all for sharing. Diane

> -------------- Original message from Kristy Colvin : --------------

>

> Diane

> When the child has mastered the word completely they usually just drop the

sign and when they begin communicating their needs enough with words that they

are satisfied, they automatically quit signing. Tim quit signing around 4 or 5.

I wouldn't worry about it though.... it is a good thing that they know how to

sign! Most people wish they had the ability!

>

> I promise, the signing definitely is increasing the vocabulary!

> Kristy

>

> mblessed5t wrote:

> My daughter is starting to really communicate these days. Not in full

> sentences, but if she want a banana, she will come up to me, tap me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like I

> said, no sentences but lots of letting us know what she wants through

> words. My question is, at what age did you all with older ones let go

> completely of the sign, and let your child work more on the words? Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your thoughts.

> Diane

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa.org

> http://www.mosaicmoments.today.com

>

>

[Guest guest]

Thanks for all of your feed back. This is who evalutated my daughter and told

me not to sign with her.

http://www.talktools.net/site/web-content/child_solutions/index.htm

My therapist was teaching me some of this approach, and I was able to have Sara

herself evaluate my daughter. She believes in a lot of feeling the words and

letters to form them. We have done a LOT of oral motor since birth with my

daughter, based on Sara's works. So I have had it in my head for a while to not

sign, since she is so well known in her field. This is in a nut shell what she

taught us, and what we have followed over the last 3 and a half years.

www.verbalbehavior.pbwiki.comf/StrawsandHornsInSpeechtherapy.pdf

Does anyone else follow Sara's approach?

Thanks for all of your feed back. I am learning a ton! Diane

--------- Re: Question

>

> I just can't imagine a ST telling you not to sign! I would wonder where this

ST has trained at. I thought that all ST's understood the benefits of signing!

Also, research has shown that babies who are taught sign language have much

better communication skills and less frustration than babies who aren't. (these

are babies without speech delays!)

>

> Keep signing!!!

> Kristy

>

> Grovers wrote:

> Kristy, This make complete sense. I do still sign with her words that she has

been saying too. So it is good for us to drop those, and keep up with the

others. THANK you so much for this. Now I know what I have to do. We have not

stopped learning new ones yet, and I do think they are helping her with learning

words. I always get hung up on the ST telling us to not sign at all, and I start

to wonder if we are doing harm. I know it is one person's opinion, but I am glad

to hear others. Thanks to all for sharing. Diane

> -------------- Original message from Kristy Colvin : --------------

>

> Diane

> When the child has mastered the word completely they usually just drop the

sign and when they begin communicating their needs enough with words that they

are satisfied, they automatically quit signing. Tim quit signing around 4 or 5.

I wouldn't worry about it though.... it is a good thing that they know how to

sign! Most people wish they had the ability!

>

> I promise, the signing definitely is increasing the vocabulary!

> Kristy

>

> mblessed5t wrote:

> My daughter is starting to really communicate these days. Not in full

> sentences, but if she want a banana, she will come up to me, tap me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like I

> said, no sentences but lots of letting us know what she wants through

> words. My question is, at what age did you all with older ones let go

> completely of the sign, and let your child work more on the words? Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your thoughts.

> Diane

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa.org

> http://www.mosaicmoments.today.com

>

>

[Guest guest]

Yes, I agree with this. I see this in all of my kids, they don't say as much as

others, but they are taking it all in. So yes, this does make sense to me. And

I could not agree more. Neat huh. Diane

-------------- Original message from " " :

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

....Also, I have figured out (by watching people in general) that

usually those who are smarter listen more and talk less. Perhaps, we

are not giving credit where it is justly due here. :0) Has anyone

ever thought that our children are just listening to us more than

speaking because they are " learning " and " thinking " . Perhap those

extraordinary pathways in the brain are firing so much (rather than

less) that they are too busy to talk. Think about it. (Sorry for

jumping in here on your post, Angel. It actually was not in response

to anything you said or did not say. It was just a thought I realized

a long time ago.....I hope it helps some o us out there.):0)))

<br>

> >

> > My daughter is starting to really communicate these days. Not

in

> full

> > sentences, but if she want a banana, she will come up to me, tap

me,

> > and then say nana. If she needs to go potty she will say pee

pee.

> > Some of what she is saying is all so new this summer. It seems

like

> > new words are popping out each day. And the part that is

surprising

> > me is how intentional her communication is. She is 3 and 1/2.

Like

> I

> > said, no sentences but lots of letting us know what she wants

through

> > words. My question is, at what age did you all with older ones

let go

> > completely of the sign, and let your child work more on the

words?

> Or

> > did you? I find us moving further and further from the

signing, and

> > more and more closer to the words. Would love to hear your

thoughts.

> > Diane

> >

>

>

>

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

>

> Become a member of IMDSA today at http://www.imdsa.org

> *******************************************************

> Purchase your MDS awareness bracelet

> today!http://www.imdsa.org/Awareness/aware.htm

>

**********************************************************************

****

> Contact IMDSA Today at:

> IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-

LINK

>

*********************************************************************

> Share your story today! http://www.mosaicdownsyndrome.com

> *********************************************************

>

[Guest guest]

I went to the weblink, but I stopped reading at " oral-motor

deficiency " ;let me explain why. For years, all I have heard is

this: " Children with Down Syndrome typically have problems with

speech because of the low facial tone. " Several speech therapists

proclaimed this,even in their reports, as the " probable reason " for

lack of speech in my son. (this was before the Apraxia of Speech

diagnosis.) I finally discovered along the way that two things were

wrong with this statement when referencing my child: first, he does

not have Down Syndrome, but rather he has MDS; second, he has no

issues whatsoever with hypotonia in the facial or oral region.

(LOL...I can tell this when he eats and then again when he sceams and

pitches fits....ROTFL ;0)That is when I started looking at other

reasons. And then we pinpointed a couple of reasons: One, he has no

need to talk; Two, he may have damage from a NG Tube or other devices

to his vocal cords. (Children with any diagnosis of of any type of

DS, and typically it is just DS becaue of the missed diagnosis of

MDS, sometimes get a NG tube at birth as a routine procedure. (Not

all, but a lot, do because the doctors think all of the babies with

this diagnosis cannot nurse or eat well....which is so not true for

100% of them.) I do know one thing that helps and here it is: when I

stopped worrying so much, things started improving. Don't get me

wrong....this s a legitimate concern because speech is a fundamental

quality of everyday life and living is much more diffcult without

speech. But when we realized he understands everything we say, half

the worry was gone. (The failed audiograms were 100% wrong and they

almost had me talked into piercing his eardrums...whew! glad we did

not do that one!) Sometimes, he does not " want " to listen. (Typical

child, especially typical with overexpression of the gene...the

stubborn gene...lol)

> > My daughter is starting to really communicate these days. Not in

full

> > sentences, but if she want a banana, she will come up to me, tap

me,

> > and then say nana. If she needs to go potty she will say pee pee.

> > Some of what she is saying is all so new this summer. It seems

like

> > new words are popping out each day. And the part that is

surprising

> > me is how intentional her communication is. She is 3 and 1/2.

Like I

> > said, no sentences but lots of letting us know what she wants

through

> > words. My question is, at what age did you all with older ones

let go

> > completely of the sign, and let your child work more on the

words? Or

> > did you? I find us moving further and further from the signing,

and

> > more and more closer to the words. Would love to hear your

thoughts.

> > Diane

> >

> > Kristy Colvin

> > IMDSA President

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > International Mosaic Down Syndrome Association

> > PH:

> > Toll Free: 1-888-MDS-LINK

> > http://www.imdsa.org

> > http://www.mosaicmoments.today.com

> >

> >

[Guest guest]

Yep. :0)

<br>

> > >

> > > My daughter is starting to really communicate these days. Not

> in

> > full

> > > sentences, but if she want a banana, she will come up to me,

tap

> me,

> > > and then say nana. If she needs to go potty she will say pee

> pee.

> > > Some of what she is saying is all so new this summer. It seems

> like

> > > new words are popping out each day. And the part that is

> surprising

> > > me is how intentional her communication is. She is 3 and 1/2.

> Like

> > I

> > > said, no sentences but lots of letting us know what she wants

> through

> > > words. My question is, at what age did you all with older ones

> let go

> > > completely of the sign, and let your child work more on the

> words?

> > Or

> > > did you? I find us moving further and further from the

> signing, and

> > > more and more closer to the words. Would love to hear your

> thoughts.

> > > Diane

> > >

> >

> >

> >

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

> >

> > Become a member of IMDSA today at http://www.imdsa.org

> > *******************************************************

> > Purchase your MDS awareness bracelet

> > today!http://www.imdsa.org/Awareness/aware.htm

> >

>

**********************************************************************

> ****

> > Contact IMDSA Today at:

> > IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-

> LINK

> >

>

*********************************************************************

> > Share your story today! http://www.mosaicdownsyndrome.com

> > *********************************************************

> >

[Guest guest]

Yes yes yes and YES! I love this. I am so excited to read all of ya alls

experiences. To be honest, since we had a wrong diagnosis, everyone was doing

all of the wrong things for us as well. Thankfully, my mommy gut kept kicking

in, and I kept pushing some ideas away. The first one was the non nursing idea.

Immediately they told me she won't nurse, and they told me they hope she will be

able to take a bottle. Well, I asked them if I could try, and she latched RIGHT

on perfectly. And did beautifully for a year and a half. They also told me

that she would have low muscle tone, and not to introduce a straw too soon as

whe would not be able to do it correctly. Well, thankfully, my PT saw something

different, and we went right to it. She did beautifully again. Now remember,

we had no idea she had MDS, so we kept thinking she was going against the odds.

But now with her new diagnosis, EVERYTHING fits. I am SO thrilled I asked this

question. My confidence is growing so much. Not that I was not listening to

that little voice in me, but I was starting to second guess again. Some how I

have a feeling that will be gone for me. THANK YOU! Love, Diane

-------------- Original message from " " :

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

I went to the weblink, but I stopped reading at " oral-motor

deficiency " ;let me explain why. For years, all I have heard is

this: " Children with Down Syndrome typically have problems with

speech because of the low facial tone. " Several speech therapists

proclaimed this,even in their reports, as the " probable reason " for

lack of speech in my son. (this was before the Apraxia of Speech

diagnosis.) I finally discovered along the way that two things were

wrong with this statement when referencing my child: first, he does

not have Down Syndrome, but rather he has MDS; second, he has no

issues whatsoever with hypotonia in the facial or oral region.

(LOL...I can tell this when he eats and then again when he sceams and

pitches fits....ROTFL ;0)That is when I started looking at other

reasons. And then we pinpointed a couple of reasons: One, he has no

need to talk; Two, he may have damage from a NG Tube or other devices

to his vocal cords. (Children with any diagnosis of of any type of

DS, and typically it is just DS becaue of the missed diagnosis of

MDS, sometimes get a NG tube at birth as a routine procedure. (Not

all, but a lot, do because the doctors think all of the babies with

this diagnosis cannot nurse or eat well....which is so not true for

100% of them.) I do know one thing that helps and here it is: when I

stopped worrying so much, things started improving. Don't get me

wrong....this s a legitimate concern because speech is a fundamental

quality of everyday life and living is much more diffcult without

speech. But when we realized he understands everything we say, half

the worry was gone. (The failed audiograms were 100% wrong and they

almost had me talked into piercing his eardrums...whew! glad we did

not do that one!) Sometimes, he does not " want " to listen. (Typical

child, especially typical with overexpression of the gene...the

stubborn gene...lol)

> > My daughter is starting to really communicate these days. Not in

full

> > sentences, but if she want a banana, she will come up to me, tap

me,

> > and then say nana. If she needs to go potty she will say pee pee.

> > Some of what she is saying is all so new this summer. It seems

like

> > new words are popping out each day. And the part that is

surprising

> > me is how intentional her communication is. She is 3 and 1/2.

Like I

> > said, no sentences but lots of letting us know what she wants

through

> > words. My question is, at what age did you all with older ones

let go

> > completely of the sign, and let your child work more on the

words? Or

> > did you? I find us moving further and further from the signing,

and

> > more and more closer to the words. Would love to hear your

thoughts.

> > Diane

> >

> > Kristy Colvin

> > IMDSA President

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > International Mosaic Down Syndrome Association

> > PH:

> > Toll Free: 1-888-MDS-LINK

> > http://www.imdsa.org

> > http://www.mosaicmoments.today.com

> >

> >

[Guest guest]

Yep. :0) Those " connections " are another name for " neural pathways " .

You got it!

> > My daughter is starting to really communicate these days. Not in

full

> > sentences, but if she want a banana, she will come up to me, tap

me,

> > and then say nana. If she needs to go potty she will say pee pee.

> > Some of what she is saying is all so new this summer. It seems

like

> > new words are popping out each day. And the part that is

surprising

> > me is how intentional her communication is. She is 3 and 1/2.

Like I

> > said, no sentences but lots of letting us know what she wants

through

> > words. My question is, at what age did you all with older ones

let go

> > completely of the sign, and let your child work more on the

words? Or

> > did you? I find us moving further and further from the signing,

and

> > more and more closer to the words. Would love to hear your

thoughts.

> > Diane

> >

> > Kristy Colvin

> > IMDSA President

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > International Mosaic Down Syndrome Association

> > PH:

> > Toll Free: 1-888-MDS-LINK

> > http://www.imdsa.org

> > http://www.mosaicmoments.today.com

> >

> >

[Guest guest]

Diane,I am so glad you are here and I am so glad that you have goten

these responses!!! :0) Are you beginning to see like we did that your

child is just a normal kid??? It just makes you sick in a way, huh?

(That you listened to them at all.)-Follow your gut from now on. :0)))

-- In MosaicDS , " Grovers " wrote:

>

> Yes yes yes and YES! I love this. I am so excited to read all of

ya alls experiences. To be honest, since we had a wrong diagnosis,

everyone was doing all of the wrong things for us as well.

Thankfully, my mommy gut kept kicking in, and I kept pushing some

ideas away. The first one was the non nursing idea. Immediately they

told me she won't nurse, and they told me they hope she will be able

to take a bottle. Well, I asked them if I could try, and she latched

RIGHT on perfectly. And did beautifully for a year and a half. They

also told me that she would have low muscle tone, and not to

introduce a straw too soon as whe would not be able to do it

correctly. Well, thankfully, my PT saw something different, and we

went right to it. She did beautifully again. Now remember, we had

no idea she had MDS, so we kept thinking she was going against the

odds. But now with her new diagnosis, EVERYTHING fits. I am SO

thrilled I asked this question. My confidence is growing so much.

Not that I was not listening to that little voice in me, but I was

starting to second guess again. Some how I have a feeling that will

be gone for me. THANK YOU! Love, Diane

> -------------- Original message from " "

: --------------

>

> I went to the weblink, but I stopped reading at " oral-motor

> deficiency " ;let me explain why. For years, all I have heard is

> this: " Children with Down Syndrome typically have problems with

> speech because of the low facial tone. " Several speech therapists

> proclaimed this,even in their reports, as the " probable reason " for

> lack of speech in my son. (this was before the Apraxia of Speech

> diagnosis.) I finally discovered along the way that two things were

> wrong with this statement when referencing my child: first, he does

> not have Down Syndrome, but rather he has MDS; second, he has no

> issues whatsoever with hypotonia in the facial or oral region.

> (LOL...I can tell this when he eats and then again when he sceams

and

> pitches fits....ROTFL ;0)That is when I started looking at other

> reasons. And then we pinpointed a couple of reasons: One, he has no

> need to talk; Two, he may have damage from a NG Tube or other

devices

> to his vocal cords. (Children with any diagnosis of of any type of

> DS, and typically it is just DS becaue of the missed diagnosis of

> MDS, sometimes get a NG tube at birth as a routine procedure. (Not

> all, but a lot, do because the doctors think all of the babies with

> this diagnosis cannot nurse or eat well....which is so not true for

> 100% of them.) I do know one thing that helps and here it is: when

I

> stopped worrying so much, things started improving. Don't get me

> wrong....this s a legitimate concern because speech is a

fundamental

> quality of everyday life and living is much more diffcult without

> speech. But when we realized he understands everything we say, half

> the worry was gone. (The failed audiograms were 100% wrong and they

> almost had me talked into piercing his eardrums...whew! glad we did

> not do that one!) Sometimes, he does not " want " to listen. (Typical

> child, especially typical with overexpression of the gene...the

> stubborn gene...lol)

>

>

>

> > > My daughter is starting to really communicate these days. Not

in

> full

> > > sentences, but if she want a banana, she will come up to me,

tap

> me,

> > > and then say nana. If she needs to go potty she will say pee

pee.

> > > Some of what she is saying is all so new this summer. It seems

> like

> > > new words are popping out each day. And the part that is

> surprising

> > > me is how intentional her communication is. She is 3 and 1/2.

> Like I

> > > said, no sentences but lots of letting us know what she wants

> through

> > > words. My question is, at what age did you all with older ones

> let go

> > > completely of the sign, and let your child work more on the

> words? Or

> > > did you? I find us moving further and further from the signing,

> and

> > > more and more closer to the words. Would love to hear your

> thoughts.

> > > Diane

> > >

> > > Kristy Colvin

> > > IMDSA President

> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > International Mosaic Down Syndrome Association

> > > PH:

> > > Toll Free: 1-888-MDS-LINK

> > > http://www.imdsa.org

> > > http://www.mosaicmoments.today.com

> > >

> > >

[Guest guest]

LOL...You mean the error message: " INTERNET EXPORER CANNOT DISPLAY

THE PAGE. " ?? LOL....I got smart and " copied " my post before I hit

send. You will be much happier if you get into a hbit of doing it so

you do not have to type it all over again. I " do " feel your

frustration...sorry for LOL...I have just been ther too many times

and it was NOT funny.

> My daughter is starting to really communicate these days. Not in

full

> sentences, but if she want a banana, she will come up to me, tap

me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like

I

> said, no sentences but lots of letting us know what she wants

through

> words. My question is, at what age did you all with older ones let

go

> completely of the sign, and let your child work more on the words?

Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your

thoughts.

> Diane

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

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

> http://www.mosaicmoments.today.com

<http://www.mosaicmoments.today.com/>

>

>

[Guest guest]

, Yes, and ironically we had said that SO much before we even had a

different diagnosis. Okay, here is a kicker for you. The other day, we were at

a school event for my kids, and a mom approached me, and stared at Ellen,

and looked at me and then said, " Wow, she almost looks normal. " And then she

walked away. LOL. I did not get to say what I wanted to say. Which was,

" Yeah, she is almost normal! " OH DEAR! Anyway, your comment made me crack up.

Yes, we have enjoyed her all along, and to be honest, we just see Ellen.

Exactly who she is supposed to be. Love, Diane

-------------- Original message from " " :

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

Diane,I am so glad you are here and I am so glad that you have goten

these responses!!! :0) Are you beginning to see like we did that your

child is just a normal kid??? It just makes you sick in a way, huh?

(That you listened to them at all.)-Follow your gut from now on. :0)))

-- In MosaicDS , " Grovers " wrote:

>

> Yes yes yes and YES! I love this. I am so excited to read all of

ya alls experiences. To be honest, since we had a wrong diagnosis,

everyone was doing all of the wrong things for us as well.

Thankfully, my mommy gut kept kicking in, and I kept pushing some

ideas away. The first one was the non nursing idea. Immediately they

told me she won't nurse, and they told me they hope she will be able

to take a bottle. Well, I asked them if I could try, and she latched

RIGHT on perfectly. And did beautifully for a year and a half. They

also told me that she would have low muscle tone, and not to

introduce a straw too soon as whe would not be able to do it

correctly. Well, thankfully, my PT saw something different, and we

went right to it. She did beautifully again. Now remember, we had

no idea she had MDS, so we kept thinking she was going against the

odds. But now with her new diagnosis, EVERYTHING fits. I am SO

thrilled I asked this question. My confidence is growing so much.

Not that I was not listening to that little voice in me, but I was

starting to second guess again. Some how I have a feeling that will

be gone for me. THANK YOU! Love, Diane

> -------------- Original message from " "

: --------------

>

> I went to the weblink, but I stopped reading at " oral-motor

> deficiency " ;let me explain why. For years, all I have heard is

> this: " Children with Down Syndrome typically have problems with

> speech because of the low facial tone. " Several speech therapists

> proclaimed this,even in their reports, as the " probable reason " for

> lack of speech in my son. (this was before the Apraxia of Speech

> diagnosis.) I finally discovered along the way that two things were

> wrong with this statement when referencing my child: first, he does

> not have Down Syndrome, but rather he has MDS; second, he has no

> issues whatsoever with hypotonia in the facial or oral region.

> (LOL...I can tell this when he eats and then again when he sceams

and

> pitches fits....ROTFL ;0)That is when I started looking at other

> reasons. And then we pinpointed a couple of reasons: One, he has no

> need to talk; Two, he may have damage from a NG Tube or other

devices

> to his vocal cords. (Children with any diagnosis of of any type of

> DS, and typically it is just DS becaue of the missed diagnosis of

> MDS, sometimes get a NG tube at birth as a routine procedure. (Not

> all, but a lot, do because the doctors think all of the babies with

> this diagnosis cannot nurse or eat well....which is so not true for

> 100% of them.) I do know one thing that helps and here it is: when

I

> stopped worrying so much, things started improving. Don't get me

> wrong....this s a legitimate concern because speech is a

fundamental

> quality of everyday life and living is much more diffcult without

> speech. But when we realized he understands everything we say, half

> the worry was gone. (The failed audiograms were 100% wrong and they

> almost had me talked into piercing his eardrums...whew! glad we did

> not do that one!) Sometimes, he does not " want " to listen. (Typical

> child, especially typical with overexpression of the gene...the

> stubborn gene...lol)

>

>

>

> > > My daughter is starting to really communicate these days. Not

in

> full

> > > sentences, but if she want a banana, she will come up to me,

tap

> me,

> > > and then say nana. If she needs to go potty she will say pee

pee.

> > > Some of what she is saying is all so new this summer. It seems

> like

> > > new words are popping out each day. And the part that is

> surprising

> > > me is how intentional her communication is. She is 3 and 1/2.

> Like I

> > > said, no sentences but lots of letting us know what she wants

> through

> > > words. My question is, at what age did you all with older ones

> let go

> > > completely of the sign, and let your child work more on the

> words? Or

> > > did you? I find us moving further and further from the signing,

> and

> > > more and more closer to the words. Would love to hear your

> thoughts.

> > > Diane

> > >

> > > Kristy Colvin

> > > IMDSA President

> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > International Mosaic Down Syndrome Association

> > > PH:

> > > Toll Free: 1-888-MDS-LINK

> > > http://www.imdsa.org

> > > http://www.mosaicmoments.today.com

> > >

> > >

[Guest guest]

Diane, we had something similar happen with RELATIVES. They had

absenced themselves from me since my son's birth and their knowledge

of his then diagnosis of DS (now MDS and they have no clue and I do

not care if they ever know...lol). We happen to run into them in a

SAM'S parking lot. They did not know what else to say and all that

popped out was (after their thorough " lookover " of him), " Well, there

is nothing wrong with him at all is there? " I was so " stunned " , as

they walked off hurriedly. I think they were embarassed at their

previous actions not to help me when I most needed them after his

birth and all the rotten things that happened as a result of his

diagnosis. Well, the last laugh is on them. Especially now, knowing

that this is a dominant trait. LOL....I still laugh today. (It keeps

me sane.) :0))

> > > > My daughter is starting to really communicate these days. Not

> in

> > full

> > > > sentences, but if she want a banana, she will come up to me,

> tap

> > me,

> > > > and then say nana. If she needs to go potty she will say pee

> pee.

> > > > Some of what she is saying is all so new this summer. It

seems

> > like

> > > > new words are popping out each day. And the part that is

> > surprising

> > > > me is how intentional her communication is. She is 3 and 1/2.

> > Like I

> > > > said, no sentences but lots of letting us know what she wants

> > through

> > > > words. My question is, at what age did you all with older

ones

> > let go

> > > > completely of the sign, and let your child work more on the

> > words? Or

> > > > did you? I find us moving further and further from the

signing,

> > and

> > > > more and more closer to the words. Would love to hear your

> > thoughts.

> > > > Diane

> > > >

> > > > Kristy Colvin

> > > > IMDSA President

> > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > International Mosaic Down Syndrome Association

> > > > PH:

> > > > Toll Free: 1-888-MDS-LINK

> > > > http://www.imdsa.org

> > > > http://www.mosaicmoments.today.com

> > > >

> > > >

[Guest guest]

ROTFLOL! I love when life takes care of the relatives for you! LOL Thanks

for sharing that. And yep, I think you know how that felt. LOL Diane

-------------- Original message from " " :

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

Diane, we had something similar happen with RELATIVES. They had

absenced themselves from me since my son's birth and their knowledge

of his then diagnosis of DS (now MDS and they have no clue and I do

not care if they ever know...lol). We happen to run into them in a

SAM'S parking lot. They did not know what else to say and all that

popped out was (after their thorough " lookover " of him), " Well, there

is nothing wrong with him at all is there? " I was so " stunned " , as

they walked off hurriedly. I think they were embarassed at their

previous actions not to help me when I most needed them after his

birth and all the rotten things that happened as a result of his

diagnosis. Well, the last laugh is on them. Especially now, knowing

that this is a dominant trait. LOL....I still laugh today. (It keeps

me sane.) :0))

> > > > My daughter is starting to really communicate these days. Not

> in

> > full

> > > > sentences, but if she want a banana, she will come up to me,

> tap

> > me,

> > > > and then say nana. If she needs to go potty she will say pee

> pee.

> > > > Some of what she is saying is all so new this summer. It

seems

> > like

> > > > new words are popping out each day. And the part that is

> > surprising

> > > > me is how intentional her communication is. She is 3 and 1/2.

> > Like I

> > > > said, no sentences but lots of letting us know what she wants

> > through

> > > > words. My question is, at what age did you all with older

ones

> > let go

> > > > completely of the sign, and let your child work more on the

> > words? Or

> > > > did you? I find us moving further and further from the

signing,

> > and

> > > > more and more closer to the words. Would love to hear your

> > thoughts.

> > > > Diane

> > > >

> > > > Kristy Colvin

> > > > IMDSA President

> > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > International Mosaic Down Syndrome Association

> > > > PH:

> > > > Toll Free: 1-888-MDS-LINK

> > > > http://www.imdsa.org

> > > > http://www.mosaicmoments.today.com

> > > >

> > > >

[Guest guest]

" Pierce his eardrums? " I don't understand.

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of

Sent: Tue 7/29/2008 10:01 PM

To: MosaicDS

Subject: Re: Question

I went to the weblink, but I stopped reading at " oral-motor

deficiency " ;let me explain why. For years, all I have heard is

this: " Children with Down Syndrome typically have problems with

speech because of the low facial tone. " Several speech therapists

proclaimed this,even in their reports, as the " probable reason " for

lack of speech in my son. (this was before the Apraxia of Speech

diagnosis.) I finally discovered along the way that two things were

wrong with this statement when referencing my child: first, he does

not have Down Syndrome, but rather he has MDS; second, he has no

issues whatsoever with hypotonia in the facial or oral region.

(LOL...I can tell this when he eats and then again when he sceams and

pitches fits....ROTFL ;0)That is when I started looking at other

reasons. And then we pinpointed a couple of reasons: One, he has no

need to talk; Two, he may have damage from a NG Tube or other devices

to his vocal cords. (Children with any diagnosis of of any type of

DS, and typically it is just DS becaue of the missed diagnosis of

MDS, sometimes get a NG tube at birth as a routine procedure. (Not

all, but a lot, do because the doctors think all of the babies with

this diagnosis cannot nurse or eat well....which is so not true for

100% of them.) I do know one thing that helps and here it is: when I

stopped worrying so much, things started improving. Don't get me

wrong....this s a legitimate concern because speech is a fundamental

quality of everyday life and living is much more diffcult without

speech. But when we realized he understands everything we say, half

the worry was gone. (The failed audiograms were 100% wrong and they

almost had me talked into piercing his eardrums...whew! glad we did

not do that one!) Sometimes, he does not " want " to listen. (Typical

child, especially typical with overexpression of the gene...the

stubborn gene...lol)

> > My daughter is starting to really communicate these days. Not in

full

> > sentences, but if she want a banana, she will come up to me, tap

me,

> > and then say nana. If she needs to go potty she will say pee pee.

> > Some of what she is saying is all so new this summer. It seems

like

> > new words are popping out each day. And the part that is

surprising

> > me is how intentional her communication is. She is 3 and 1/2.

Like I

> > said, no sentences but lots of letting us know what she wants

through

> > words. My question is, at what age did you all with older ones

let go

> > completely of the sign, and let your child work more on the

words? Or

> > did you? I find us moving further and further from the signing,

and

> > more and more closer to the words. Would love to hear your

thoughts.

> > Diane

> >

> > Kristy Colvin

> > IMDSA President

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > International Mosaic Down Syndrome Association

> > PH:

> > Toll Free: 1-888-MDS-LINK

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

> > http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/>

> >

> >

[Guest guest]

It's ok that you LOLed me! Actually, no, that was not what happened this time.

(That usually happens to me when I type an extremely long e-mail and my

connection times out while I am typing!). Both times that it did not post, it

" sent " just fine, but then never did show up. I was gettin really frustrated!

Glad I finally got my point across! HAHA! (I'll even LOL myself!)

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of

Sent: Tue 7/29/2008 10:19 PM

To: MosaicDS

Subject: Re: Question

LOL...You mean the error message: " INTERNET EXPORER CANNOT DISPLAY

THE PAGE. " ?? LOL....I got smart and " copied " my post before I hit

send. You will be much happier if you get into a hbit of doing it so

you do not have to type it all over again. I " do " feel your

frustration...sorry for LOL...I have just been ther too many times

and it was NOT funny.

> My daughter is starting to really communicate these days. Not in

full

> sentences, but if she want a banana, she will come up to me, tap

me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like

I

> said, no sentences but lots of letting us know what she wants

through

> words. My question is, at what age did you all with older ones let

go

> completely of the sign, and let your child work more on the words?

Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your

thoughts.

> Diane

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

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

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

> http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/>

<http://www.mosaicmoments.today.com/ <http://www.mosaicmoments.today.com/> >

>

>

[Guest guest]

Diane

LOL That really made me laugh! It astounds me how incredibly rude people can

be and the fact that they have no idea how rude they actually are!

Over the years we have heard these kinds of comments and it never ceases to

amaze me!

I think it was Peg who said that someone told her " Imagine how pretty she

would be if she didn't have Ds! "

These kinds of people, unfortunately, will come in and out of your life for

ever. You just have to chalk it up to ignorance and try to have a snappy come

back already in place for those people. Like " Wow! You almost looked polite

until you opened your mouth! " LOL well....that is probably even more rude! It is

just a matter of educating!

Kristy>>>>shaking her head...

Grovers wrote:

, Yes, and ironically we had said that SO much before we even had

a different diagnosis. Okay, here is a kicker for you. The other day, we were at

a school event for my kids, and a mom approached me, and stared at Ellen,

and looked at me and then said, " Wow, she almost looks normal. " And then she

walked away. LOL. I did not get to say what I wanted to say. Which was, " Yeah,

she is almost normal! " OH DEAR! Anyway, your comment made me crack up. Yes, we

have enjoyed her all along, and to be honest, we just see Ellen. Exactly who

she is supposed to be. Love, Diane

-------------- Original message from " " :

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

Diane,I am so glad you are here and I am so glad that you have goten

these responses!!! :0) Are you beginning to see like we did that your

child is just a normal kid??? It just makes you sick in a way, huh?

(That you listened to them at all.)-Follow your gut from now on. :0)))

-- In MosaicDS , " Grovers " wrote:

>

> Yes yes yes and YES! I love this. I am so excited to read all of

ya alls experiences. To be honest, since we had a wrong diagnosis,

everyone was doing all of the wrong things for us as well.

Thankfully, my mommy gut kept kicking in, and I kept pushing some

ideas away. The first one was the non nursing idea. Immediately they

told me she won't nurse, and they told me they hope she will be able

to take a bottle. Well, I asked them if I could try, and she latched

RIGHT on perfectly. And did beautifully for a year and a half. They

also told me that she would have low muscle tone, and not to

introduce a straw too soon as whe would not be able to do it

correctly. Well, thankfully, my PT saw something different, and we

went right to it. She did beautifully again. Now remember, we had

no idea she had MDS, so we kept thinking she was going against the

odds. But now with her new diagnosis, EVERYTHING fits. I am SO

thrilled I asked this question. My confidence is growing so much.

Not that I was not listening to that little voice in me, but I was

starting to second guess again. Some how I have a feeling that will

be gone for me. THANK YOU! Love, Diane

> -------------- Original message from " "

: --------------

>

> I went to the weblink, but I stopped reading at " oral-motor

> deficiency " ;let me explain why. For years, all I have heard is

> this: " Children with Down Syndrome typically have problems with

> speech because of the low facial tone. " Several speech therapists

> proclaimed this,even in their reports, as the " probable reason " for

> lack of speech in my son. (this was before the Apraxia of Speech

> diagnosis.) I finally discovered along the way that two things were

> wrong with this statement when referencing my child: first, he does

> not have Down Syndrome, but rather he has MDS; second, he has no

> issues whatsoever with hypotonia in the facial or oral region.

> (LOL...I can tell this when he eats and then again when he sceams

and

> pitches fits....ROTFL ;0)That is when I started looking at other

> reasons. And then we pinpointed a couple of reasons: One, he has no

> need to talk; Two, he may have damage from a NG Tube or other

devices

> to his vocal cords. (Children with any diagnosis of of any type of

> DS, and typically it is just DS becaue of the missed diagnosis of

> MDS, sometimes get a NG tube at birth as a routine procedure. (Not

> all, but a lot, do because the doctors think all of the babies with

> this diagnosis cannot nurse or eat well....which is so not true for

> 100% of them.) I do know one thing that helps and here it is: when

I

> stopped worrying so much, things started improving. Don't get me

> wrong....this s a legitimate concern because speech is a

fundamental

> quality of everyday life and living is much more diffcult without

> speech. But when we realized he understands everything we say, half

> the worry was gone. (The failed audiograms were 100% wrong and they

> almost had me talked into piercing his eardrums...whew! glad we did

> not do that one!) Sometimes, he does not " want " to listen. (Typical

> child, especially typical with overexpression of the gene...the

> stubborn gene...lol)

>

>

>

> > > My daughter is starting to really communicate these days. Not

in

> full

> > > sentences, but if she want a banana, she will come up to me,

tap

> me,

> > > and then say nana. If she needs to go potty she will say pee

pee.

> > > Some of what she is saying is all so new this summer. It seems

> like

> > > new words are popping out each day. And the part that is

> surprising

> > > me is how intentional her communication is. She is 3 and 1/2.

> Like I

> > > said, no sentences but lots of letting us know what she wants

> through

> > > words. My question is, at what age did you all with older ones

> let go

> > > completely of the sign, and let your child work more on the

> words? Or

> > > did you? I find us moving further and further from the signing,

> and

> > > more and more closer to the words. Would love to hear your

> thoughts.

> > > Diane

> > >

> > > Kristy Colvin

> > > IMDSA President

> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > International Mosaic Down Syndrome Association

> > > PH:

> > > Toll Free: 1-888-MDS-LINK

> > > http://www.imdsa.org

> > > http://www.mosaicmoments.today.com

> > >

> > >

[Guest guest]

I am a big believer in Sara and her work. But I didn't know that she advised not

to sign. I was planning on talking with her today. If I get that chance, I will

ask her about it!

Kristy

Grovers wrote:

Thanks for all of your feed back. This is who evalutated my daughter

and told me not to sign with her.

http://www.talktools.net/site/web-content/child_solutions/index.htm

My therapist was teaching me some of this approach, and I was able to have Sara

herself evaluate my daughter. She believes in a lot of feeling the words and

letters to form them. We have done a LOT of oral motor since birth with my

daughter, based on Sara's works. So I have had it in my head for a while to not

sign, since she is so well known in her field. This is in a nut shell what she

taught us, and what we have followed over the last 3 and a half years.

www.verbalbehavior.pbwiki.comf/StrawsandHornsInSpeechtherapy.pdf

Does anyone else follow Sara's approach?

Thanks for all of your feed back. I am learning a ton! Diane

--------- Re: Question

>

> I just can't imagine a ST telling you not to sign! I would wonder where this

ST has trained at. I thought that all ST's understood the benefits of signing!

Also, research has shown that babies who are taught sign language have much

better communication skills and less frustration than babies who aren't. (these

are babies without speech delays!)

>

> Keep signing!!!

> Kristy

>

> Grovers wrote:

> Kristy, This make complete sense. I do still sign with her words that she has

been saying too. So it is good for us to drop those, and keep up with the

others. THANK you so much for this. Now I know what I have to do. We have not

stopped learning new ones yet, and I do think they are helping her with learning

words. I always get hung up on the ST telling us to not sign at all, and I start

to wonder if we are doing harm. I know it is one person's opinion, but I am glad

to hear others. Thanks to all for sharing. Diane

> -------------- Original message from Kristy Colvin : --------------

>

> Diane

> When the child has mastered the word completely they usually just drop the

sign and when they begin communicating their needs enough with words that they

are satisfied, they automatically quit signing. Tim quit signing around 4 or 5.

I wouldn't worry about it though.... it is a good thing that they know how to

sign! Most people wish they had the ability!

>

> I promise, the signing definitely is increasing the vocabulary!

> Kristy

>

> mblessed5t wrote:

> My daughter is starting to really communicate these days. Not in full

> sentences, but if she want a banana, she will come up to me, tap me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like I

> said, no sentences but lots of letting us know what she wants through

> words. My question is, at what age did you all with older ones let go

> completely of the sign, and let your child work more on the words? Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your thoughts.

> Diane

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa.org

> http://www.mosaicmoments.today.com

>

>

[Guest guest]

Yes, please ask her. Maybe I heard her wrong! I would love to hear if I did.

I do remember it well, though as my ST was sitting with me, and I remember her

face turning red. LOL. I will be excited to hear what she reports. Thanks.

Diane

--------- Re: Question

>

> I just can't imagine a ST telling you not to sign! I would wonder where this

ST has trained at. I thought that all ST's understood the benefits of signing!

Also, research has shown that babies who are taught sign language have much

better communication skills and less frustration than babies who aren't. (these

are babies without speech delays!)

>

> Keep signing!!!

> Kristy

>

> Grovers wrote:

> Kristy, This make complete sense. I do still sign with her words that she has

been saying too. So it is good for us to drop those, and keep up with the

others. THANK you so much for this. Now I know what I have to do. We have not

stopped learning new ones yet, and I do think they are helping her with learning

words. I always get hung up on the ST telling us to not sign at all, and I start

to wonder if we are doing harm. I know it is one person's opinion, but I am glad

to hear others. Thanks to all for sharing. Diane

> -------------- Original message from Kristy Colvin : --------------

>

> Diane

> When the child has mastered the word completely they usually just drop the

sign and when they begin communicating their needs enough with words that they

are satisfied, they automatically quit signing. Tim quit signing around 4 or 5.

I wouldn't worry about it though.... it is a good thing that they know how to

sign! Most people wish they had the ability!

>

> I promise, the signing definitely is increasing the vocabulary!

> Kristy

>

> mblessed5t wrote:

> My daughter is starting to really communicate these days. Not in full

> sentences, but if she want a banana, she will come up to me, tap me,

> and then say nana. If she needs to go potty she will say pee pee.

> Some of what she is saying is all so new this summer. It seems like

> new words are popping out each day. And the part that is surprising

> me is how intentional her communication is. She is 3 and 1/2. Like I

> said, no sentences but lots of letting us know what she wants through

> words. My question is, at what age did you all with older ones let go

> completely of the sign, and let your child work more on the words? Or

> did you? I find us moving further and further from the signing, and

> more and more closer to the words. Would love to hear your thoughts.

> Diane

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa.org

> http://www.mosaicmoments.today.com

>

>

[Guest guest]

Amen !!! I'm behind you 1000% !!!! LOL

 

Blessings Abound,

(Becky) Rowe

Family Assistance Coordinator

www.imdsa.org

IMDSA Conference July 10-12, 2009

Mom to Trey (8 ADHD) & Austin (5 MDS)

Re: Question

Oh Kristy, I love that comment. Yes, it might be a smidgen rude if we would

reply this way, but I have to at least tuck it away so I can at least " pretend "

to say it, (under my breath at the very least) when this happens again. Yes, it

has happened enough to know it will happen again. LOL. I love being able to

share this stuff with you all.

As for imagining how pretty she is comment....ugghhhh. ...dear oh dear. that one

kills me. We have had people say something similar, " It looks like she mostly

has it in her eyes. Mostly her right one. Otherwise she looks fine! " I smiled,

and walked away. The irony, it was before we knew she had MDS, so perhaps they

were more right than me. LOL. And to their defense, not that I am defending this

sort of bluntness, my geneticist did also mark that her one eye had more of a

feature than the other. I can not see it, as it is so small of a difference. But

obviously the other " professionals " out there in the world see what he saw. LOL.

Personally, I love her little features. How sad of a comment on that. But I do

get to walk away and laugh at the people who say these things. And trust me, I

do laugh. LOL Love, Diane

------------ -- Original message from Kristy Colvin <kristyimdsa (DOT) org

<mailto:kristy% 40imdsa.org> >: ------------ --

Diane

LOL That really made me laugh! It astounds me how incredibly rude people can be

and the fact that they have no idea how rude they actually are!

Over the years we have heard these kinds of comments and it never ceases to

amaze me!

I think it was Peg who said that someone told her " Imagine how pretty she would

be if she didn't have Ds! "

These kinds of people, unfortunately, will come in and out of your life for

ever. You just have to chalk it up to ignorance and try to have a snappy come

back already in place for those people. Like " Wow! You almost looked polite

until you opened your mouth! " LOL well....that is probably even more rude! It is

just a matter of educating!

Kristy>>>>shaking her head...

Grovers <diane_grover@ bellsouth. net <mailto:diane_ grover%40bellsou th.net> >

wrote:

, Yes, and ironically we had said that SO much before we even had a

different diagnosis. Okay, here is a kicker for you. The other day, we were at a

school event for my kids, and a mom approached me, and stared at Ellen, and

looked at me and then said, " Wow, she almost looks normal. " And then she walked

away. LOL. I did not get to say what I wanted to say. Which was, " Yeah, she is

almost normal! " OH DEAR! Anyway, your comment made me crack up. Yes, we have

enjoyed her all along, and to be honest, we just see Ellen. Exactly who she

is supposed to be. Love, Diane

------------ -- Original message from " " <agirlnamedsuess@ hotmail.com

<mailto:agirlnameds uess%40hotmail. com> >: ------------ --

Diane,I am so glad you are here and I am so glad that you have goten

these responses!!! :0) Are you beginning to see like we did that your

child is just a normal kid??? It just makes you sick in a way, huh?

(That you listened to them at all.)-Follow your gut from now on. :0)))

-- In MosaicDS@yahoogroup s.com <mailto:MosaicDS% 40yahoogroups. com> ,

" Grovers " <diane_grover@ ...> wrote:

>

> Yes yes yes and YES! I love this. I am so excited to read all of

ya alls experiences. To be honest, since we had a wrong diagnosis,

everyone was doing all of the wrong things for us as well.

Thankfully, my mommy gut kept kicking in, and I kept pushing some

ideas away. The first one was the non nursing idea. Immediately they

told me she won't nurse, and they told me they hope she will be able

to take a bottle. Well, I asked them if I could try, and she latched

RIGHT on perfectly. And did beautifully for a year and a half. They

also told me that she would have low muscle tone, and not to

introduce a straw too soon as whe would not be able to do it

correctly. Well, thankfully, my PT saw something different, and we

went right to it. She did beautifully again. Now remember, we had

no idea she had MDS, so we kept thinking she was going against the

odds. But now with her new diagnosis, EVERYTHING fits. I am SO

thrilled I asked this question. My confidence is growing so much.

Not that I was not listening to that little voice in me, but I was

starting to second guess again. Some how I have a feeling that will

be gone for me. THANK YOU! Love, Diane

> ------------ -- Original message from " "

<agirlnamedsuess@ ...>: ------------ --

>

> I went to the weblink, but I stopped reading at " oral-motor

> deficiency " ; let me explain why. For years, all I have heard is

> this: " Children with Down Syndrome typically have problems with

> speech because of the low facial tone. " Several speech therapists

> proclaimed this,even in their reports, as the " probable reason " for

> lack of speech in my son. (this was before the Apraxia of Speech

> diagnosis.) I finally discovered along the way that two things were

> wrong with this statement when referencing my child: first, he does

> not have Down Syndrome, but rather he has MDS; second, he has no

> issues whatsoever with hypotonia in the facial or oral region.

> (LOL...I can tell this when he eats and then again when he sceams

and

> pitches fits....ROTFL ;0)That is when I started looking at other

> reasons. And then we pinpointed a couple of reasons: One, he has no

> need to talk; Two, he may have damage from a NG Tube or other

devices

> to his vocal cords. (Children with any diagnosis of of any type of

> DS, and typically it is just DS becaue of the missed diagnosis of

> MDS, sometimes get a NG tube at birth as a routine procedure. (Not

> all, but a lot, do because the doctors think all of the babies with

> this diagnosis cannot nurse or eat well....which is so not true for

> 100% of them.) I do know one thing that helps and here it is: when

I

> stopped worrying so much, things started improving. Don't get me

> wrong....this s a legitimate concern because speech is a

fundamental

> quality of everyday life and living is much more diffcult without

> speech. But when we realized he understands everything we say, half

> the worry was gone. (The failed audiograms were 100% wrong and they

> almost had me talked into piercing his eardrums...whew! glad we did

> not do that one!) Sometimes, he does not " want " to listen. (Typical

> child, especially typical with overexpression of the gene...the

> stubborn gene...lol)

>

>

>

> > > My daughter is starting to really communicate these days. Not

in

> full

> > > sentences, but if she want a banana, she will come up to me,

tap

> me,

> > > and then say nana. If she needs to go potty she will say pee

pee.

> > > Some of what she is saying is all so new this summer. It seems

> like

> > > new words are popping out each day. And the part that is

> surprising

> > > me is how intentional her communication is. She is 3 and 1/2.

> Like I

> > > said, no sentences but lots of letting us know what she wants

> through

> > > words. My question is, at what age did you all with older ones

> let go

> > > completely of the sign, and let your child work more on the

> words? Or

> > > did you? I find us moving further and further from the signing,

> and

> > > more and more closer to the words. Would love to hear your

> thoughts.

> > > Diane

> > >

> > > Kristy Colvin

> > > IMDSA President

> > > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> > > International Mosaic Down Syndrome Association

> > > PH:

> > > Toll Free: 1-888-MDS-LINK

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

> > > http://www.mosaicmo ments.today. com <http://www.mosaicmo ments.today.

com/>

> > >

> > >

[Guest guest]

An AMEN from me too!

--------- Re: Question

Oh Kristy, I love that comment. Yes, it might be a smidgen rude if we would

reply this way, but I have to at least tuck it away so I can at least " pretend "

to say it, (under my breath at the very least) when this happens again. Yes, it

has happened enough to know it will happen again. LOL. I love being able to

share this stuff with you all.

As for imagining how pretty she is comment....ugghhhh. ...dear oh dear. that one

kills me. We have had people say something similar, " It looks like she mostly

has it in her eyes. Mostly her right one. Otherwise she looks fine! " I smiled,

and walked away. The irony, it was before we knew she had MDS, so perhaps they

were more right than me. LOL. And to their defense, not that I am defending this

sort of bluntness, my geneticist did also mark that her one eye had more of a

feature than the other. I can not see it, as it is so small of a difference. But

obviously the other " professionals " out there in the world see what he saw. LOL.

Personally, I love her little features. How sad of a comment on that. But I do

get to walk away and laugh at the people who say these things. And trust me, I

do laugh. LOL Love, Diane

------------ -- Original message from Kristy Colvin <kristyimdsa (DOT) org

<mailto:kristy% 40imdsa.org> >: ------------ --

Diane

LOL That really made me laugh! It astounds me how incredibly rude people can be

and the fact that they have no idea how rude they actually are!

Over the years we have heard these kinds of comments and it never ceases to

amaze me!

I think it was Peg who said that someone told her " Imagine how pretty she would

be if she didn't have Ds! "

These kinds of people, unfortunately, will come in and out of your life for

ever. You just have to chalk it up to ignorance and try to have a snappy come

back already in place for those people. Like " Wow! You almost looked polite

until you opened your mouth! " LOL well....that is probably even more rude! It is

just a matter of educating!

Kristy>>>>shaking her head...

Grovers <diane_grover@ bellsouth. net <mailto:diane_ grover%40bellsou th.net> >

wrote:

, Yes, and ironically we had said that SO much before we even had a

different diagnosis. Okay, here is a kicker for you. The other day, we were at a

school event for my kids, and a mom approached me, and stared at Ellen, and

looked at me and then said, " Wow, she almost looks normal. " And then she walked

away. LOL. I did not get to say what I wanted to say. Which was, " Yeah, she is

almost normal! " OH DEAR! Anyway, your comment made me crack up. Yes, we have

enjoyed her all along, and to be honest, we just see Ellen. Exactly who she

is supposed to be. Love, Diane

------------ -- Original message from " " <agirlnamedsuess@ hotmail.com

<mailto:agirlnameds uess%40hotmail. com> >: ------------ --

Diane,I am so glad you are here and I am so glad that you have goten

these responses!!! :0) Are you beginning to see like we did that your

child is just a normal kid??? It just makes you sick in a way, huh?

(That you listened to them at all.)-Follow your gut from now on. :0)))

-- In MosaicDS@yahoogroup s.com <mailto:MosaicDS% 40yahoogroups. com> ,

" Grovers " <diane_grover@ ...> wrote:

>

> Yes yes yes and YES! I love this. I am so excited to read all of

ya alls experiences. To be honest, since we had a wrong diagnosis,

everyone was doing all of the wrong things for us as well.

Thankfully, my mommy gut kept kicking in, and I kept pushing some

ideas away. The first one was the non nursing idea. Immediately they

told me she won't nurse, and they told me they hope she will be able

to take a bottle. Well, I asked them if I could try, and she latched

RIGHT on perfectly. And did beautifully for a year and a half. They

also told me that she would have low muscle tone, and not to

introduce a straw too soon as whe would not be able to do it

correctly. Well, thankfully, my PT saw something different, and we

went right to it. She did beautifully again. Now remember, we had

no idea she had MDS, so we kept thinking she was going against the

odds. But now with her new diagnosis, EVERYTHING fits. I am SO

thrilled I asked this question. My confidence is growing so much.

Not that I was not listening to that little voice in me, but I was

starting to second guess again. Some how I have a feeling that will

be gone for me. THANK YOU! Love, Diane

> ------------ -- Original message from " "

<agirlnamedsuess@ ...>: ------------ --

>

> I went to the weblink, but I stopped reading at " oral-motor

> deficiency " ; let me explain why. For years, all I have heard is

> this: " Children with Down Syndrome typically have problems with

> speech because of the low facial tone. " Several speech therapists

> proclaimed this,even in their reports, as the " probable reason " for

> lack of speech in my son. (this was before the Apraxia of Speech

> diagnosis.) I finally discovered along the way that two things were

> wrong with this statement when referencing my child: first, he does

> not have Down Syndrome, but rather he has MDS; second, he has no

> issues whatsoever with hypotonia in the facial or oral region.

> (LOL...I can tell this when he eats and then again when he sceams

and

> pitches fits....ROTFL ;0)That is when I started looking at other

> reasons. And then we pinpointed a couple of reasons: One, he has no

> need to talk; Two, he may have damage from a NG Tube or other

devices

> to his vocal cords. (Children with any diagnosis of of any type of

> DS, and typically it is just DS becaue of the missed diagnosis of

> MDS, sometimes get a NG tube at birth as a routine procedure. (Not

> all, but a lot, do because the doctors think all of the babies with

> this diagnosis cannot nurse or eat well....which is so not true for

> 100% of them.) I do know one thing that helps and here it is: when

I

> stopped worrying so much, things started improving. Don't get me

> wrong....this s a legitimate concern because speech is a

fundamental

> quality of everyday life and living is much more diffcult without

> speech. But when we realized he understands everything we say, half

> the worry was gone. (The failed audiograms were 100% wrong and they

> almost had me talked into piercing his eardrums...whew! glad we did

> not do that one!) Sometimes, he does not " want " to listen. (Typical

> child, especially typical with overexpression of the gene...the

> stubborn gene...lol)

>

>

>

> > > My daughter is starting to really communicate these days. Not

in

> full

> > > sentences, but if she want a banana, she will come up to me,

tap

> me,

> > > and then say nana. If she needs to go potty she will say pee

pee.

> > > Some of what she is saying is all so new this summer. It seems

> like

> > > new words are popping out each day. And the part that is

> surprising

> > > me is how intentional her communication is. She is 3 and 1/2.

> Like I

> > > said, no sentences but lots of letting us know what she wants

> through

> > > words. My question is, at what age did you all with older ones

> let go

> > > completely of the sign, and let your child work more on the

> words? Or

> > > did you? I find us moving further and further from the signing,

> and

> > > more and more closer to the words. Would love to hear your

> thoughts.

> > > Diane

> > >

> > > Kristy Colvin

> > > IMDSA President

> > > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> > > International Mosaic Down Syndrome Association

> > > PH:

> > > Toll Free: 1-888-MDS-LINK

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

> > > http://www.mosaicmo ments.today. com <http://www.mosaicmo ments.today.

com/>

> > >

> > >