Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 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 > ------------------------------------ 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 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) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 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/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > ********************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > ********************************************************* > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 , 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 " 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/> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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/> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Amen !!! I'm behind you 1000% !!!! LOL Â 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/> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 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/> > > > > > > Quote Link to comment Share on other sites More sharing options...
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