Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 I can say that my mom was very much for an abortion when the OBGYN told us would have MDS. She mentioned it several times during my pregnancy along with telling me it wouldn't be fair to my older son to keep . Thank goodness she and her husband love and accept now that he is here. I sometimes can't help but wonder how they would feel if had more issues but always try to remind myself of the " here and now " instead of the " what if " . God Bless each and everyone of us and our children. They teach me something everyday. LOVE and LOVED. Trista ---- Grovers wrote: > 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 -Trista, I feel for you very much so, as I had and still have some of these issues with various family members; one of which is my father, but that is a whole other thread and very depressing. I learned very quickly what people really though of my children. And when CH had the diagnosis of DS, he was treated much differently than now with a diagnosis of MDS 50% (2006)[i put the percentage followed by the date, as well, because that number is subject to change and probably different by now,,,,,lol] Anyway, those who said awfl things about him still do not know the new diagnosis, never visit, and have their mind made up on how he is supposed to be. They will never have the opportunity to see my son in a different light and that is so sad. Those who have accepted him and the rest of us for how we are...well, they are still around us. <br> I am glad that your mother seems to accept your son now that he is here; it would stil be on my mind also, though, and I would wonder how she really feels inside. It would bug me to the point of asking. I never knew or had any suspicion whatsoever of DS or MDS with my son or any of us (for that matter) before his birth. Before CH was born, he was my prize child....our first boy. I had a vey happy pregnancy. I just wish that could have continued right after birth. But the past is gone and now it is much better than before. -- In MosaicDS , wrote: > > I can say that my mom was very much for an abortion when the OBGYN told us would have MDS. She mentioned it several times during my pregnancy along with telling me it wouldn't be fair to my older son to keep . Thank goodness she and her husband love and accept now that he is here. I sometimes can't help but wonder how they would feel if had more issues but always try to remind myself of the " here and now " instead of the " what if " . God Bless each and everyone of us and our children. They teach me something everyday. LOVE and LOVED. > Trista > > > ---- Grovers wrote: > > 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 Personally, I LOVE our almond-shaped eyes! I always heard that children with DS were painted more in portraits in the olden centuries because of their ability to stay still (LOL) and their incredible BEAUTY!!!! SO, that is a weird and narcistic comment from whoever made it. Some people are so much into themselves that they fail to even see or hear what they are saying and doing. <br> And if almond-shaped eyes are so bad, then why do " MOVIE STARS " have plastic surgery to obtain them?? ROTFL. <br> I never noticed I had them until after Charlie Hart, and as a matter of fact, I really did not have them in my younger pictures. I forget what it is called, but I " acquired " mine for the most part in the aging process. I just chalk it up to genetics. <br> Almond eyes are well sought after and very beautiful. SUsan > > > > 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 September 13, 2008 Report Share Posted September 13, 2008 , Me thinks you protest too much. People might actually know you by your eye color rather than that you are an author. The point was, it's all a part of who you are. If someone was looking for me they would say I have gorgeous brown eyes, long silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to me that's a part of who I am. I guess I can change that with green contact lenses. But no one would know me on sight if they were told to look for a dental hygienist. Judie, mom to Christi, 29 and others ************** Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 I really hate that gmail does not have an automatic spell checker - I meant Kindergarten and intelligible Darlene On Sat, Sep 13, 2008 at 2:10 PM, Darlene Benoit wrote: > , > > I second what Judie said, you have to be as open and honest about " who she > is " as possible. > > At first I told people I worked with because I needed support, I was still > reeling " How could MY PRINCESS " have MDS? > And now I am still shocked when people (only 3 people have) ask " Does your > daughter have DS? " Mostly people who have children with DS - they can see > it in her eyes, which is her only external sign of MDS. > However, has a speech delay. She is 9 and she did not talk until > she was in 2nd grade - without speech teachers are at a loss to check that a > Kindergartern or 1st grade student knows the answers. So she lost 2 years > of school. Her speech is coming fast - it is 70% intellegable but you have > to slow down and listen to what she is saying to understand. > > So I was always afraid that she would be judged by how she looks, now she > is judged by how she sounds. But as for the kids in school - they just > know her as and she has a TON of friends. > > So you really can't prepare for everything. Believe me, I tried. You will > make mistakes, and you will learn. > > Good Luck with Andi, > Darlene - Mom to (11) and (9) > > > > >> Dear , >> >> If you really want people to look at Andi (great name!) " for who she is " >> then be open about who she is. She is herself, and MDS is as much a part >> of her >> as the color of her eyes. >> >> As for " labels, " the mosaicism's effect on Andi won't be known until her >> development progresses, but no matter how, it doesn't change the fact that >> its >> there. >> >> You can explain to others that you waited to talk about it because you >> wanted >> to get a handle on it yourselves first, so you could better answer >> questions you knew you'd be facing. >> >> Judie, mom to Christi, 29 and others >> >> ************** >> Psssst...Have you heard the news? There's a new fashion blog, >> plus the latest fall trends and hair styles at StyleList.com. >> >> (http://www.stylelist.com/trends?ncid=aolsty00050000000014) >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 In a way I agree, but I have to disagree with what I " hear " (read) being said here. The color of her eyes, her outsid apearance, and MDS do " NOT " define " who she is " . It certainly does not define me or my children. For instance....I am an author, a nurse, a private investigator, a childbirth educator, an independent researcher into the field of Down Syndrome, a wonderful Mom,and a homeschool teacher. This is how people know me; they do not know me by my eye color or my genetic makeup. I think the wrong message is coming across here, because certainly this is not what you have meant to say. (Is it?) SUSan > > Dear , > > If you really want people to look at Andi (great name!) " for who she is " > then be open about who she is. She is herself, and MDS is as much a part of her > as the color of her eyes. > > As for " labels, " the mosaicism's effect on Andi won't be known until her > development progresses, but no matter how, it doesn't change the fact that its > there. > > You can explain to others that you waited to talk about it because you wanted > to get a handle on it yourselves first, so you could better answer > questions you knew you'd be facing. > > > Judie, mom to Christi, 29 and others > > > > ************** > Psssst...Have you heard the news? There's a new fashion blog, > plus the latest fall trends and hair styles at StyleList.com. > > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 - No, no one defines you by the color of your eyes or what you look like (at least we can't see you on email ;-) But in everyday life - 90% of the people that you pass will make a judgement about you by your appearance, your demeanor, your friendliness, something you said that was overheard or something else without getting to know you. And you don't know what that judgement is - unless they are afraid of you and move to the other side of the elevator and huddle in fear. Now, once people get to know you, that opinion may change - or it may not depending on you and their frame of mind. Darlene > In a way I agree, but I have to disagree with what I " hear " (read) > being said here. The color of her eyes, her outsid apearance, and MDS > do " NOT " define " who she is " . It certainly does not define me or my > children. > For instance....I am an author, a nurse, a private investigator, a > childbirth educator, an independent researcher into the field of Down > Syndrome, a wonderful Mom,and a homeschool teacher. This is how > people know me; they do not know me by my eye color or my genetic > makeup. > I think the wrong message is coming across here, because certainly > this is not what you have meant to say. (Is it?) > SUSan > > > > > Dear , > > > > If you really want people to look at Andi (great name!) " for who > she is " > > then be open about who she is. She is herself, and MDS is as much a > part of her > > as the color of her eyes. > > > > As for " labels, " the mosaicism's effect on Andi won't be known > until her > > development progresses, but no matter how, it doesn't change the > fact that its > > there. > > > > You can explain to others that you waited to talk about it because > you wanted > > to get a handle on it yourselves first, so you could better > answer > > questions you knew you'd be facing. > > > > > > Judie, mom to Christi, 29 and others > > > > > > > > ************** > > Psssst...Have you heard the news? There's a new fashion blog, > > plus the latest fall trends and hair styles at StyleList.com. > > > > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Maybe I do protest too much; maybe I have had to? (I know I have had to.) The first thing I tell people is about our qualities. I do not bring up MDS unless someone else does. There are many misconceptions (generalized ones) associated the term " Down Syndrome " in any form. I just do not see a need in it. If I go to apply for a job, I put " who I am " , not what my phenotype is. Sometimes I mightlist the " good genotype " qualities (i.e. attention to detail, etc...), but why does it matter about the rest? (Unless I am around those with same genetic conditions and then I have a " need " to acquire more information or give it, either one. So, I would bring up things like, inherited MDS, MDS 50%, and so forth.) I am a people first person. I would not " lie " to someone; that is not what my intent was to say. I would however reserve my comments to things that paint positive thoughts in others heads about my children. (based on truths, of course) With the wealth of " misinformstion " out there on DS and MDS, I am afraid that there is too much negativity surrounding these genetic differences. And that " is " a shame. If someone wants to be educated, which many people that I meet do, then by all means, I educate them. Like all of my thoughts/comments, you can take it with a grain of salt. I never meanto offend anyone at all. I believe everyone should act in a way that makes them feel good with themselves and not in a way that someone else thinks they should be. It was only an opinion. I have had to be very forthright and moreso since my first son was born because I have been thru most everything including some ignorant lawmakers and government officials who tried to adopt out my son. I act the way I do purposefully. I am very passionate about " who " I am. I apologize if anyone takes offens to my comments. It is just " who I am " . > > , > > Me thinks you protest too much. People might actually know you by your eye > color rather than that you are an author. The point was, it's all a part of who > you are. > > If someone was looking for me they would say I have gorgeous brown eyes, long > silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to > me that's a part of who I am. I guess I can change that with green contact > lenses. But no one would know me on sight if they were told to look for a dental > hygienist. > > Judie, mom to Christi, 29 and others > > > > ************** > Psssst...Have you heard the news? There's a new fashion blog, > plus the latest fall trends and hair styles at StyleList.com. > > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Darlene, That is correct. Maybe, I misunderstood what someone was saying in the post? Because what I read was that someone was telling someone else to be forthright first about the MDS before anything else...Is that not correct? Maybe I read that incorrectly or interpretted it the wrong way? --- > > > > > > Dear , > > > > > > If you really want people to look at Andi (great name!) " for who > > she is " > > > then be open about who she is. She is herself, and MDS is as much a > > part of her > > > as the color of her eyes. > > > > > > As for " labels, " the mosaicism's effect on Andi won't be known > > until her > > > development progresses, but no matter how, it doesn't change the > > fact that its > > > there. > > > > > > You can explain to others that you waited to talk about it because > > you wanted > > > to get a handle on it yourselves first, so you could better > > answer > > > questions you knew you'd be facing. > > > > > > > > > Judie, mom to Christi, 29 and others > > > > > > > > > > > > ************** > > > Psssst...Have you heard the news? There's a new fashion blog, > > > plus the latest fall trends and hair styles at StyleList.com. > > > > > > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 I remember Judie for 2 reasons....A) I have a picture of Christy from last year's conference & She's another RAIDER fan...LOL I try mostly to remember Moms by who their kids are...like in Trey's class or Austin's. I will always remember the child, but if I have not met their parents before I do a little " word " association so that I can remember people.... Sometimes it's something they have such as a tattoo or piercing....at least if I do that, I can pick 'em out of a line up LOL  Blessings Abound, (Becky) Rowe Mom to Trey (8 ADHD) & Austin (5 MDS) ________________________________ Family Assistance Coordinator  www.imdsa.org or becky@... Help Team Austin @: http://teambrats08.chipin.com/team-austin  Re: Question , Me thinks you protest too much. People might actually know you by your eye color rather than that you are an author. The point was, it's all a part of who you are. If someone was looking for me they would say I have gorgeous brown eyes, long silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to me that's a part of who I am. I guess I can change that with green contact lenses. But no one would know me on sight if they were told to look for a dental hygienist. Judie, mom to Christi, 29 and others ************ ** Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelis t.com/trends? ncid=aolsty00050 000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Thank you so much for sharing. My husband are in a class called incredible infants. It is a class offered in our town for parents who have children between 2-4 months apart. It is a 10 session class. Every night before the class we would ask our selves " Are we going to tell the group tonight? " When it came to our time to talk about Andi we never brought it up. Our fear was.... These were all first time parents-We didn't want the families to think Andi would hold their child back. We didn't want to be judged. We didn't want Andi to be looked at differently.. We had all of these concerns. Well last Wednesday we let them into our life a little bit deeper. We decided to tell the group. We were shocked in how amazing the group was. Their faces had dropped in shock but they were very supportive. We left our group with no regrets and felt very good about our decision. The next morning I got an email from a couple of the mom's stated how brave we are and are so happy that we shared. This confirmed for me that we made the right decision. Yeah!!! I think this was the first step for us to be more open about Andi. I think a lot of what this has to deal with is ME being the one to tell people. I don't want everyone else going around town saying " Did you hear about the Hummel's? " Does that make sense? Maybe I am just being a control freak... lol... I am getting to the point where I do not care what people think, this is who we are and that's that. However, my fear is that if people do find out that this will define her and it shouldn't but I know how uneducated and judgmental people can be. Time will tell... Thank you to all of you ladies!!! Re:Question Hi My son Hunter is nearly 1 so I don't know what I will do yet for school etc, however when Hunter was first born we told everyone who was involved in our lives. So friends, family, new doctors etc etc. When Hunter was 2 months old I joined a mothers group (in the new town we were moving too). I used to drive 2 hours each way from our old address every week to be a part of this mothers group as we knew we were moving there and I wanted to make some new friends. As yet I still haven't told my new friends Hunter has MDS. I wanted them to get to know Hunter as Hunter and not automatically associate him with his disability. I just thought that if I told them, then every time they talked about him or thought of him, they would automatically see the disability before they saw him. When Hunter was 5 months old we moved to the new town. As yet we have only told 1 of our neighbours as we have become really close to them and they baby-sit Hunter on the odd occasion, however I have asked them not to tell anyone else in the street yet (very friendly street). I'm glad I have done it this way and I stand by my decision. I am actually planning on telling my mothers group next week (funny timing) and I know they will all be shocked, but I'm also looking forward to educating them about MDS. The reason I'm telling them now is because I have found myself in situations where I've been talking to them and have gone to make a reference to Hunters MDS or have gone to mention something to do with his physio or EI and I've had to stop myself and hold back, which I don't want to do. They are my friends now, and I want to be able to share ALL the ups and downs of raising Hunter with them. Anyway I'm not sure if this helps you in any way, I hope it does, and you are right it is a personal decision. I think you will know who to tell and who doesn't need to know. Cheers Fiona Mum to Hunter 11 mths (MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 - Unfortunately, the uneducated and judgemental will always be here. That is a fact of life but you and Andi can show them by how proud of your daughter you are now and SHE will show them later. My daughter has LOTS of friends and LOVES to meet new ones, so she talks to every kid in gymnastics or in swim class or wherever she is. She is very friendly and usually disarms them with her personality. Darlene > Thank you so much for sharing. My husband are in a class called > incredible infants. It is a class offered in our town for parents who have > children between 2-4 months apart. It is a 10 session class. Every night > before the class we would ask our selves " Are we going to tell the group > tonight? " When it came to our time to talk about Andi we never brought it > up. Our fear was.... These were all first time parents-We didn't want the > families to think Andi would hold their child back. We didn't want to be > judged. We didn't want Andi to be looked at differently.. We had all of > these concerns. Well last Wednesday we let them into our life a little bit > deeper. We decided to tell the group. We were shocked in how amazing the > group was. Their faces had dropped in shock but they were very supportive. > We left our group with no regrets and felt very good about our decision. The > next morning I got an email from a couple of the mom's stated how brave we > are and are so happy that we shared. This confirmed for me that we made the > right decision. Yeah!!! I think this was the first step for us to be more > open about Andi. I think a lot of what this has to deal with is ME being the > one to tell people. I don't want everyone else going around town saying " Did > you hear about the Hummel's? " Does that make sense? Maybe I am just being a > control freak... lol... I am getting to the point where I do not care what > people think, this is who we are and that's that. However, my fear is that > if people do find out that this will define her and it shouldn't but I know > how uneducated and judgmental people can be. Time will tell... > > Thank you to all of you ladies!!! > > > > Re:Question > > Hi > > My son Hunter is nearly 1 so I don't know what I will do yet for school > etc, however when Hunter was first born we told everyone who was involved in > our lives. So friends, family, new doctors etc etc. > > When Hunter was 2 months old I joined a mothers group (in the new town we > were moving too). I used to drive 2 hours each way from our old address > every week to be a part of this mothers group as we knew we were moving > there and I wanted to make some new friends. As yet I still haven't told my > new friends Hunter has MDS. I wanted them to get to know Hunter as Hunter > and not automatically associate him with his disability. I just thought that > if I told them, then every time they talked about him or thought of him, > they would automatically see the disability before they saw him. > > When Hunter was 5 months old we moved to the new town. As yet we have only > told 1 of our neighbours as we have become really close to them and they > baby-sit Hunter on the odd occasion, however I have asked them not to tell > anyone else in the street yet (very friendly street). > > I'm glad I have done it this way and I stand by my decision. I am actually > planning on telling my mothers group next week (funny timing) and I know > they will all be shocked, but I'm also looking forward to educating them > about MDS. The reason I'm telling them now is because I have found myself in > situations where I've been talking to them and have gone to make a reference > to Hunters MDS or have gone to mention something to do with his physio or EI > and I've had to stop myself and hold back, which I don't want to do. They > are my friends now, and I want to be able to share ALL the ups and downs of > raising Hunter with them. > > Anyway I'm not sure if this helps you in any way, I hope it does, and you > are right it is a personal decision. I think you will know who to tell and > who doesn't need to know. > > Cheers > Fiona > Mum to Hunter 11 mths (MDS) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 My favorite motto from a parent support group: " What works for your child is what makes the choice right. " That is the motto of Hands and Voices, a nationwide support and advocacy group for families who have a child who is Deaf or Hard of Hearing. I will say this in regard to education. I have always said it's ok to keep your child's MDS a secret from his/her teacher(s) as long as s/he has no physical characteristics, no delays, and no unique educational needs (such as the need for OT, PT, or speech during the school day). The more information your child's teacher has, the better equipped they will be to help your child. The entire reason I am a part of this group is because I had a student with MDS. As soon as I learned I was getting this student, I immediately began researching on the Internet and came across this group. If that parent had not disclosed her child's MDS, I would have never found IMDSA and I certainly would not have had the resources to meet that child's educational needs over those four years. I really don't think a parent does their child any favors by not disclosing such crucial information to the child's teacher. 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 Hummel Sent: Sunday, September 14, 2008 12:07 PM To: MosaicDS Subject: Re: Re:Question Thank you so much for sharing. My husband are in a class called incredible infants. It is a class offered in our town for parents who have children between 2-4 months apart. It is a 10 session class. Every night before the class we would ask our selves " Are we going to tell the group tonight? " When it came to our time to talk about Andi we never brought it up. Our fear was.... These were all first time parents-We didn't want the families to think Andi would hold their child back. We didn't want to be judged. We didn't want Andi to be looked at differently.. We had all of these concerns. Well last Wednesday we let them into our life a little bit deeper. We decided to tell the group. We were shocked in how amazing the group was. Their faces had dropped in shock but they were very supportive. We left our group with no regrets and felt very good about our decision. The next morning I got an email from a couple of the mom's stated how br ave we are and are so happy that we shared. This confirmed for me that we made the right decision. Yeah!!! I think this was the first step for us to be more open about Andi. I think a lot of what this has to deal with is ME being the one to tell people. I don't want everyone else going around town saying " Did you hear about the Hummel's? " Does that make sense? Maybe I am just being a control freak... lol... I am getting to the point where I do not care what people think, this is who we are and that's that. However, my fear is that if people do find out that this will define her and it shouldn't but I know how uneducated and judgmental people can be. Time will tell... Thank you to all of you ladies!!! Re:Question Hi My son Hunter is nearly 1 so I don't know what I will do yet for school etc, however when Hunter was first born we told everyone who was involved in our lives. So friends, family, new doctors etc etc. When Hunter was 2 months old I joined a mothers group (in the new town we were moving too). I used to drive 2 hours each way from our old address every week to be a part of this mothers group as we knew we were moving there and I wanted to make some new friends. As yet I still haven't told my new friends Hunter has MDS. I wanted them to get to know Hunter as Hunter and not automatically associate him with his disability. I just thought that if I told them, then every time they talked about him or thought of him, they would automatically see the disability before they saw him. When Hunter was 5 months old we moved to the new town. As yet we have only told 1 of our neighbours as we have become really close to them and they baby-sit Hunter on the odd occasion, however I have asked them not to tell anyone else in the street yet (very friendly street). I'm glad I have done it this way and I stand by my decision. I am actually planning on telling my mothers group next week (funny timing) and I know they will all be shocked, but I'm also looking forward to educating them about MDS. The reason I'm telling them now is because I have found myself in situations where I've been talking to them and have gone to make a reference to Hunters MDS or have gone to mention something to do with his physio or EI and I've had to stop myself and hold back, which I don't want to do. They are my friends now, and I want to be able to share ALL the ups and downs of raising Hunter with them. Anyway I'm not sure if this helps you in any way, I hope it does, and you are right it is a personal decision. I think you will know who to tell and who doesn't need to know. Cheers Fiona Mum to Hunter 11 mths (MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 I am in with Hands and Voices locally.I just started getting involved and I did not realize they wer nationwide, I guess. In a sense, I can see your point on most of wht you said, butI do have " one " question....What do " physical characteriscs have to do with learning and ability? (Yousaid aslong as they have no physical characteristics, delays, etc...) I can understand delays or physical " impairments " , but " characteristics " ?? Before long, we, as a world, will have everyone labeled according to looks....re you seeing my point? Or did you did use a wrong choice of words and mean physical impairments? Looks have nothing to do with abilities. > > My favorite motto from a parent support group: " What works for your > child is what makes the choice right. " That is the motto of Hands and > Voices, a nationwide support and advocacy group for families who have a > child who is Deaf or Hard of Hearing. > > > > I will say this in regard to education. I have always said it's ok to > keep your child's MDS a secret from his/her teacher(s) as long as s/he > has no physical characteristics, no delays, and no unique educational > needs (such as the need for OT, PT, or speech during the school day). > The more information your child's teacher has, the better equipped they > will be to help your child. The entire reason I am a part of this group > is because I had a student with MDS. As soon as I learned I was getting > this student, I immediately began researching on the Internet and came > across this group. If that parent had not disclosed her child's MDS, I > would have never found IMDSA and I certainly would not have had the > resources to meet that child's educational needs over those four years. > I really don't think a parent does their child any favors by not > disclosing such crucial information to the child's teacher. > > > > 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 Hummel > Sent: Sunday, September 14, 2008 12:07 PM > To: MosaicDS > Subject: Re: Re:Question > > > > Thank you so much for sharing. My husband are in a class called > incredible infants. It is a class offered in our town for parents who > have children between 2-4 months apart. It is a 10 session class. Every > night before the class we would ask our selves " Are we going to tell the > group tonight? " When it came to our time to talk about Andi we never > brought it up. Our fear was.... These were all first time parents-We > didn't want the families to think Andi would hold their child back. We > didn't want to be judged. We didn't want Andi to be looked at > differently.. We had all of these concerns. Well last Wednesday we let > them into our life a little bit deeper. We decided to tell the group. We > were shocked in how amazing the group was. Their faces had dropped in > shock but they were very supportive. We left our group with no regrets > and felt very good about our decision. The next morning I got an email > from a couple of the mom's stated how br ave we > are and are so happy that we shared. This confirmed for me that we made > the right decision. Yeah!!! I think this was the first step for us to be > more open about Andi. I think a lot of what this has to deal with is ME > being the one to tell people. I don't want everyone else going around > town saying " Did you hear about the Hummel's? " Does that make sense? > Maybe I am just being a control freak... lol... I am getting to the > point where I do not care what people think, this is who we are and > that's that. However, my fear is that if people do find out that this > will define her and it shouldn't but I know how uneducated and > judgmental people can be. Time will tell... > > Thank you to all of you ladies!!! > > > > Re:Question > > Hi > > My son Hunter is nearly 1 so I don't know what I will do yet for school > etc, however when Hunter was first born we told everyone who was > involved in our lives. So friends, family, new doctors etc etc. > > When Hunter was 2 months old I joined a mothers group (in the new town > we were moving too). I used to drive 2 hours each way from our old > address every week to be a part of this mothers group as we knew we were > moving there and I wanted to make some new friends. As yet I still > haven't told my new friends Hunter has MDS. I wanted them to get to know > Hunter as Hunter and not automatically associate him with his > disability. I just thought that if I told them, then every time they > talked about him or thought of him, they would automatically see the > disability before they saw him. > > When Hunter was 5 months old we moved to the new town. As yet we have > only told 1 of our neighbours as we have become really close to them and > they baby-sit Hunter on the odd occasion, however I have asked them not > to tell anyone else in the street yet (very friendly street). > > I'm glad I have done it this way and I stand by my decision. I am > actually planning on telling my mothers group next week (funny timing) > and I know they will all be shocked, but I'm also looking forward to > educating them about MDS. The reason I'm telling them now is because I > have found myself in situations where I've been talking to them and have > gone to make a reference to Hunters MDS or have gone to mention > something to do with his physio or EI and I've had to stop myself and > hold back, which I don't want to do. They are my friends now, and I want > to be able to share ALL the ups and downs of raising Hunter with them. > > Anyway I'm not sure if this helps you in any way, I hope it does, and > you are right it is a personal decision. I think you will know who to > tell and who doesn't need to know. > > Cheers > Fiona > Mum to Hunter 11 mths (MDS) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 This is something I still struggle with and my daugther Lindsey is 22. We found out she had MDS when she was 4 1/2 years old. At that time the geneticist felt it wasn't necessary to tell others of her diagnosis because few people would understand what is means. He told us in situations where we felt it might be helpful or where we felt a need to explain her problems it would be reasonable to call her condition " partial Down Syndrome. " The only people who know about her diagnosis are my mother, two of my friends, her sister and of course Lindsey herself. Some how the school found out about the MDS and used that to label her as having Cognitive Disabilities when she was in fifth grade. I did not agree with this and three years later they re-evaluated her and labeled her as having Learning Disabilities. She currently is a Senior in College and doing well. Most recently Lindsey went to see an allergist and mentioned to him that she has MDS and when I received a copy of his notes from her office visit it stated she had Down Syndrome. I guess this is why I still struggle to tell others for fear of them not understanding and misinterpreting what it means. Lynne > > Hello everyone.. > > I have a quick question that I know that some will say it is a personal choice but I would love to hear some feedback on what you would do or have done. Andi (our daughter) is 6 months old and we found out almost four months ago that she has MDS. My husband and I have went back and forth on whether we should be open about it with others. Our families know and some close friends. We have asked that our family and friends not say anything in fear that Andi will be judged before anyone knows her. We did not want anyone to look at her and try to find something wrong with her, we wanted people to look at her for who she is. Now that we are more educated and feel that we have more support through books, family and friends we are not sure if we are making the right decision. I am always so hesitant to talk about Andi's diagnoses with others. Our family is from a small town (about an hour from us) and I don't want the word to travel so fast that before > you know it I get phone calls asking why I haven't told people Andi has Down syndrome. I am also in fear that if this does not effect her that I put a label on her by telling people. A label that I might never get off. If this does not effect her and we have not told her about her unique diagnoses and someone else does how will that effect her? Or do you tell her from the beginning? Or am I just getting way ahead of myself? Any ideas thoughts or experiences will help... > > Thank you > > Hummel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 Lynne, Sorry to interrupt, but the doctors do that with Charlie Hart as well. In America, at least, you have a right to request that incorrect information in a medical record be corrected. Problem with us is we are way too busy to go to every medical file and have this corrected. We have moved around so much that it would be a big headache for me right now. What is an appropriate thing to say (from this point on) or should I say a tactful way to mention that this should be corrected when O see it in the future? There are some doctors from the past (who insisted that the DNA would not change (when he had only 7 cells looked at and was diagnosed DS when he was a baby) that I would love to send a hasty letter to informing them that " they were grossly incorrect " . I have refrained,though. > > > > Hello everyone.. > > > > I have a quick question that I know that some will say it is a > personal choice but I would love to hear some feedback on what you > would do or have done. Andi (our daughter) is 6 months old and we > found out almost four months ago that she has MDS. My husband and I > have went back and forth on whether we should be open about it with > others. Our families know and some close friends. We have asked > that our family and friends not say anything in fear that Andi will > be judged before anyone knows her. We did not want anyone to look at > her and try to find something wrong with her, we wanted people to > look at her for who she is. Now that we are more educated and feel > that we have more support through books, family and friends we are > not sure if we are making the right decision. I am always so > hesitant to talk about Andi's diagnoses with others. Our family is > from a small town (about an hour from us) and I don't want the word > to travel so fast that before > > you know it I get phone calls asking why I haven't told people > Andi has Down syndrome. I am also in fear that if this does not > effect her that I put a label on her by telling people. A label that > I might never get off. If this does not effect her and we have not > told her about her unique diagnoses and someone else does how will > that effect her? Or do you tell her from the beginning? Or am I > just getting way ahead of myself? Any ideas thoughts or experiences > will help... > > > > Thank you > > > > Hummel > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 Hi , We found out about Martim having MDS when he was 2. He now is 8. We chose to tell people only when they were able to understand what is MDS without looking at him with pity and in a different manner. So, for some people, even from my family we begin now to explain what is going on. Other people are aware from the beggining. Off course, we could do this because Martim doesn't have evident signs of trisomy 21. But I'm quite convinced it was the right decision. Most of the time people are surprised when we tell them now, what confirms that they've been treating him just as any other kid. A few others were kind of suspicious but respected our silence. But school is a very different matter. Since the beggining I always explained to educators and teachers and also seek for their support. I believe this has been very helpful because we could get a lot of support in the education field and this was important for Martim' development. So, I think there's not a general answer wether you should tell or not... I would say it depends on the people you're telling. Concerning Martim, I recently asked a psychiatrist why doesn't he ask us something about his condition. Because kids at school treat him differently (even most of the times just trying to protect him...) and he asked for the meaning of the word handicaped. She just answered that for the kid it is not a big deal. From her experience, when the kids are informed about their condition they don't have a negative reaction or even value the issue. They just collect the information but are not hurt by it. Recently Martim was a bity lazy in a special class he attends, so he told the teacher he could not do the work because he was handicapped! Without understanding really the meaning of the word, he was just trying to escape from work because he thought this would give him a special status... Be careful, these kids surprise us sometimes! I hope this helps... -- Afonso do Paço IMDSA Family Connect Representative - Portugal teresa@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 Family can say stupid things Trust me I know. Matter of fact I think we have all opened our mouth and put our foot in it at least once. Bottom line is everyone processes information diffrently and I have learned to take what my mother and father in law say Whom are extremely educated people and just let it slide off my back, MOST of the time. I may tell my mother or husband what I think about it .. I know they mean well and sometimes you can catch them in the wrong " mood " to dicuss things. We went through the same thing when Truett was born. We didnt tell our family for a few days and then so on with friends. I think they talk to other people because they are trying to cope or understand aswell. But as we all know this is when you get old " wives tales " info and hearsay. The people that need to know about Truett do and if I feel complelled to tell a stranger I do. But I dont walk into a room and just announce it to everyone. I understand the concern about your child being judged or labeled. I dont want that at all. Best of luck in how you handle things. Subject: Re: Question To: MosaicDS Date: Saturday, September 13, 2008, 11:36 PM You ladies have been amazing. We went to a wedding today and I could not wait to get home and read what your thoughts were. Thank you so much for opening up and sharing your experiences. We have felt little support from our family because when we asked if we could keep this between our family they did not do that. We felt as if we did not have time to process this information before they wanted to tell everyone. Then my mother-n-law asked us if we were embarrassed of our daughter. That comment has changed our relationship. It was like she did not get it. She did not respect that this was really hard for us. It was only a week that went by before we got people calling us or letters in the mail. Since then I have really shut down from talking to my family. Every time I try to talk to them they say she is so " typical " it is unreal. If I say something about MDS I feel as though they get annoyed. I am a first time mom learning what it is like being a mom and also learning about MDS. We have reached out to our Down syndrome network here in Eugene, in hopes that we can get more support and meet new friends. I am hoping that meeting some moms and their families will give me the strength to be open about Andi. I have read the book A Roadmap to Holland. Which is a great book. I am also reading GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Reading these stories have made me have a connection with moms that I have not been able to have since we found out about Andi. It has been great having this support group. I want to try to make the right choices for Andi and I am so thankful that I have you amazing mom's to help us with our journey so thank you!!! If anyone one has any other thoughts or experiences I would love to hear them. Re: Question , Me thinks you protest too much. People might actually know you by your eye color rather than that you are an author. The point was, it's all a part of who you are. If someone was looking for me they would say I have gorgeous brown eyes, long silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to me that's a part of who I am. I guess I can change that with green contact lenses. But no one would know me on sight if they were told to look for a dental hygienist. Judie, mom to Christi, 29 and others ************ ** Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelis t.com/trends? ncid=aolsty00050 000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 What I MEANT by that was that you cannot hide physical characteristics, so if your child has a lot of physical characteristics of MDS, there's no point in trying to keep it a secret from the teacher. > > > > My favorite motto from a parent support group: " What works for your > > child is what makes the choice right. " That is the motto of Hands > and > > Voices, a nationwide support and advocacy group for families who > have a > > child who is Deaf or Hard of Hearing. > > > > > > > > I will say this in regard to education. I have always said it's ok > to > > keep your child's MDS a secret from his/her teacher(s) as long as > s/he > > has no physical characteristics, no delays, and no unique > educational > > needs (such as the need for OT, PT, or speech during the school > day). > > The more information your child's teacher has, the better equipped > they > > will be to help your child. The entire reason I am a part of this > group > > is because I had a student with MDS. As soon as I learned I was > getting > > this student, I immediately began researching on the Internet and > came > > across this group. If that parent had not disclosed her child's > MDS, I > > would have never found IMDSA and I certainly would not have had the > > resources to meet that child's educational needs over those four > years. > > I really don't think a parent does their child any favors by not > > disclosing such crucial information to the child's teacher. > > > > > > > > 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 Hummel > > Sent: Sunday, September 14, 2008 12:07 PM > > To: MosaicDS > > Subject: Re: Re:Question > > > > > > > > Thank you so much for sharing. My husband are in a class called > > incredible infants. It is a class offered in our town for parents > who > > have children between 2-4 months apart. It is a 10 session class. > Every > > night before the class we would ask our selves " Are we going to > tell the > > group tonight? " When it came to our time to talk about Andi we never > > brought it up. Our fear was.... These were all first time parents- We > > didn't want the families to think Andi would hold their child back. > We > > didn't want to be judged. We didn't want Andi to be looked at > > differently.. We had all of these concerns. Well last Wednesday we > let > > them into our life a little bit deeper. We decided to tell the > group. We > > were shocked in how amazing the group was. Their faces had dropped > in > > shock but they were very supportive. We left our group with no > regrets > > and felt very good about our decision. The next morning I got an > email > > from a couple of the mom's stated how br ave we > > are and are so happy that we shared. This confirmed for me that we > made > > the right decision. Yeah!!! I think this was the first step for us > to be > > more open about Andi. I think a lot of what this has to deal with > is ME > > being the one to tell people. I don't want everyone else going > around > > town saying " Did you hear about the Hummel's? " Does that make sense? > > Maybe I am just being a control freak... lol... I am getting to the > > point where I do not care what people think, this is who we are and > > that's that. However, my fear is that if people do find out that > this > > will define her and it shouldn't but I know how uneducated and > > judgmental people can be. Time will tell... > > > > Thank you to all of you ladies!!! > > > > > > > > Re:Question > > > > Hi > > > > My son Hunter is nearly 1 so I don't know what I will do yet for > school > > etc, however when Hunter was first born we told everyone who was > > involved in our lives. So friends, family, new doctors etc etc. > > > > When Hunter was 2 months old I joined a mothers group (in the new > town > > we were moving too). I used to drive 2 hours each way from our old > > address every week to be a part of this mothers group as we knew we > were > > moving there and I wanted to make some new friends. As yet I still > > haven't told my new friends Hunter has MDS. I wanted them to get to > know > > Hunter as Hunter and not automatically associate him with his > > disability. I just thought that if I told them, then every time they > > talked about him or thought of him, they would automatically see the > > disability before they saw him. > > > > When Hunter was 5 months old we moved to the new town. As yet we > have > > only told 1 of our neighbours as we have become really close to > them and > > they baby-sit Hunter on the odd occasion, however I have asked them > not > > to tell anyone else in the street yet (very friendly street). > > > > I'm glad I have done it this way and I stand by my decision. I am > > actually planning on telling my mothers group next week (funny > timing) > > and I know they will all be shocked, but I'm also looking forward to > > educating them about MDS. The reason I'm telling them now is > because I > > have found myself in situations where I've been talking to them and > have > > gone to make a reference to Hunters MDS or have gone to mention > > something to do with his physio or EI and I've had to stop myself > and > > hold back, which I don't want to do. They are my friends now, and I > want > > to be able to share ALL the ups and downs of raising Hunter with > them. > > > > Anyway I'm not sure if this helps you in any way, I hope it does, > and > > you are right it is a personal decision. I think you will know who > to > > tell and who doesn't need to know. > > > > Cheers > > Fiona > > Mum to Hunter 11 mths (MDS) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 You acn't label someone with cognitive disabilities based on MDS alone. To qualify for services under that category, a child's IQ AND adaptive behavior have to be at least two standard deviations below the mean. In a nutshell, a score of below 70 on both would be required. It's HIGHLY UNUSUAL to jump from cognitive disability to learning disability. To be considered to have a learning disability, a person mus have average to above average IQ with academic performance scores well below average. There has to be a significant gap. For her clssification to have changed, there would have had to be a SIGNIFICANT jump in her IQ score -- somewhere around 30 points. > > > > Hello everyone.. > > > > I have a quick question that I know that some will say it is a > personal choice but I would love to hear some feedback on what you > would do or have done. Andi (our daughter) is 6 months old and we > found out almost four months ago that she has MDS. My husband and I > have went back and forth on whether we should be open about it with > others. Our families know and some close friends. We have asked > that our family and friends not say anything in fear that Andi will > be judged before anyone knows her. We did not want anyone to look at > her and try to find something wrong with her, we wanted people to > look at her for who she is. Now that we are more educated and feel > that we have more support through books, family and friends we are > not sure if we are making the right decision. I am always so > hesitant to talk about Andi's diagnoses with others. Our family is > from a small town (about an hour from us) and I don't want the word > to travel so fast that before > > you know it I get phone calls asking why I haven't told people > Andi has Down syndrome. I am also in fear that if this does not > effect her that I put a label on her by telling people. A label that > I might never get off. If this does not effect her and we have not > told her about her unique diagnoses and someone else does how will > that effect her? Or do you tell her from the beginning? Or am I > just getting way ahead of myself? Any ideas thoughts or experiences > will help... > > > > Thank you > > > > Hummel > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 UGH!!!!!!!!! Sorry about the typos in the last post! Between trying to type fast, a key sticking here or there, and my 6-year-old demanding something to eat every time I sit down, it's a wonder I can type ANYTHING at all! > > > > > > Hello everyone.. > > > > > > I have a quick question that I know that some will say it is a > > personal choice but I would love to hear some feedback on what you > > would do or have done. Andi (our daughter) is 6 months old and we > > found out almost four months ago that she has MDS. My husband and > I > > have went back and forth on whether we should be open about it with > > others. Our families know and some close friends. We have asked > > that our family and friends not say anything in fear that Andi will > > be judged before anyone knows her. We did not want anyone to look > at > > her and try to find something wrong with her, we wanted people to > > look at her for who she is. Now that we are more educated and feel > > that we have more support through books, family and friends we are > > not sure if we are making the right decision. I am always so > > hesitant to talk about Andi's diagnoses with others. Our family is > > from a small town (about an hour from us) and I don't want the word > > to travel so fast that before > > > you know it I get phone calls asking why I haven't told people > > Andi has Down syndrome. I am also in fear that if this does not > > effect her that I put a label on her by telling people. A label > that > > I might never get off. If this does not effect her and we have not > > told her about her unique diagnoses and someone else does how will > > that effect her? Or do you tell her from the beginning? Or am I > > just getting way ahead of myself? Any ideas thoughts or > experiences > > will help... > > > > > > Thank you > > > > > > Hummel > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 , If you don't mind me asking, what state/school system are you in? (Perhaps I should move there and my son would receive better than expected treatment in regards to his school record and dinosaur opinions). With good reason, I ask this question. Where I live and in the past two counties I have lived in, unfortunately, someone with MDS is considered to have DS and on their school record, they would be listed as MI (mentally impaired). Without trying to sound rude, how many books have you opened that talk about DS in general? Nearly everyone I have opened states that people with all forms of DS are cognitively impaired, whether this is true or not (which we all KNOW is NOT true). I am not trying to be rude, but I feel like you are under a rock. This EXACT POINT is what I have been trying to tell all on the forum for a long time and I am getting flack for it. Finally, I think others are beginning to see what is happening here. Perhaps I " do " have a " strange " or " unique " way of stating things, but fact is fact. (Of what is happening at least in my state.) I cannot even get speech services and testing in the home and I have a doctor's letter stating my son's chronic illness and need to stay away from the school environment AND he has an IEP. SUSan > > > > > > Hello everyone.. > > > > > > I have a quick question that I know that some will say it is a > > personal choice but I would love to hear some feedback on what you > > would do or have done. Andi (our daughter) is 6 months old and we > > found out almost four months ago that she has MDS. My husband and > I > > have went back and forth on whether we should be open about it with > > others. Our families know and some close friends. We have asked > > that our family and friends not say anything in fear that Andi will > > be judged before anyone knows her. We did not want anyone to look > at > > her and try to find something wrong with her, we wanted people to > > look at her for who she is. Now that we are more educated and feel > > that we have more support through books, family and friends we are > > not sure if we are making the right decision. I am always so > > hesitant to talk about Andi's diagnoses with others. Our family is > > from a small town (about an hour from us) and I don't want the word > > to travel so fast that before > > > you know it I get phone calls asking why I haven't told people > > Andi has Down syndrome. I am also in fear that if this does not > > effect her that I put a label on her by telling people. A label > that > > I might never get off. If this does not effect her and we have not > > told her about her unique diagnoses and someone else does how will > > that effect her? Or do you tell her from the beginning? Or am I > > just getting way ahead of myself? Any ideas thoughts or > experiences > > will help... > > > > > > Thank you > > > > > > Hummel > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 I'm not under a rock, . According to IDEA, a cognitive disability is based on scores on IQ tests and adaptive behavior and a learning disability is based on a comparison of IQ and performance. I do not know your son at all, so I cannot speak to why he does not receive speech services. I do know that speech is a RELATED service and one does not receive speech JUST because one has an IEP. In order to qualify to receive speech services, the services must be necessary for implementation of the IEP. For instance, a high school student who does not enunciate his/her " r " sounds properly will not receive speech therapy at school unless s/he has an IEP goal that cannot be met without receiving therapy for the " r " sounds. On the other hand, a young child whose speech has not developed enough to communicate his/her wants and needs will qualify for services, because there are a LOT of IEP goals that cannot be met if a child cannot communicate. To answer your question, I am in Northern KY in the Kenton County School system. Honestly, we have had parents open enroll their kids in our school because our special education department does such a good job following the law and providing services to students with special needs. I take my job seriously and I take the law seriously, because every child deserves an education. I hear the horror stories from around the country and think, " How in the world do they get away with that?! " I will also say, though, that most teachers -- especailly special ed teachers -- are not " against " parents and children. We got into the profession -- specifically special education -- because we have a genuine concern for kids and we want what is best for them. We are not " out to get " anybody and it is not our goal in life to deny services to any child who needs them. Over the years, I have taken MANY kids under my wing who did not qualify for services, because I could not BEAR to see them floundering around in the deep end with no life jacket. It's caused me A LOT of extra work, but I didn't care, as long as the kids were helped. Parents often tie the school's hands when they withhold valuable information about their child. That is why I say, tell the child's school about MDS. If they've never heard of it (I hadn't a few years ago!), educate them! If your child had a severe peanut allergy, you wouldn't try to hide that from the school; if your child had a severe heart condition that caused him not to be able to participate in PE, you would not try to hide that from the school; if your child were blind, you would not try to hide that from the school. Why, then, would you try to hide from the school a genetic condition that just might cause your child to need extra help? I remember Kristy's cookie analogy last year and I thought that was so profound! The only way people are going to know more about MDS is if they are educated. If the stereotype is out there that people with MDS are " mentally impaired, " the only way that stereotype is going to be dispelled is if those people MEET people with MDS, KNOW that those people have MDS, and can CLEARLY see that those people are not " mentally impaired. " I'm not saying you need to walk around with a T-shirt that announces " My child has MDS and his IQ is high! " I AM saying that some secrets are more harmful than helpful. If someone is curious or asks, educate them! > > > > > > > > Hello everyone.. > > > > > > > > I have a quick question that I know that some will say it is a > > > personal choice but I would love to hear some feedback on what > you > > > would do or have done. Andi (our daughter) is 6 months old and > we > > > found out almost four months ago that she has MDS. My husband > and > > I > > > have went back and forth on whether we should be open about it > with > > > others. Our families know and some close friends. We have asked > > > that our family and friends not say anything in fear that Andi > will > > > be judged before anyone knows her. We did not want anyone to > look > > at > > > her and try to find something wrong with her, we wanted people to > > > look at her for who she is. Now that we are more educated and > feel > > > that we have more support through books, family and friends we > are > > > not sure if we are making the right decision. I am always so > > > hesitant to talk about Andi's diagnoses with others. Our family > is > > > from a small town (about an hour from us) and I don't want the > word > > > to travel so fast that before > > > > you know it I get phone calls asking why I haven't told people > > > Andi has Down syndrome. I am also in fear that if this does not > > > effect her that I put a label on her by telling people. A label > > that > > > I might never get off. If this does not effect her and we have > not > > > told her about her unique diagnoses and someone else does how > will > > > that effect her? Or do you tell her from the beginning? Or am I > > > just getting way ahead of myself? Any ideas thoughts or > > experiences > > > will help... > > > > > > > > Thank you > > > > > > > > Hummel > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 - reading your initial post and now this one really makes me think back to when Zoe was born. We had no clue that she had MDS while I was pregnant. I had such a hard pregnancy with several things that occured but the day she came was definitely the hardest. We had a new pediatric doctor (young and this was her first time dealing with this)and she came into the room and beat around the bush with the idea that Zoe had Down syndrome. It wasn't until my OB doctors and my nurses (who I got to know very well through my pregnancy being in and out of the hospital so much)came in to the room and sat me down and were completely up front and honest about the diagnosis. That helped us deal with it throughout the week. It was then that my husband and I decided we would tell each friend and family member alone. I remember being so scared that people would look at her differently or not want to be a part of her life but the exact opposite happened. They embraced it! And that really surprised me with some of our family! I didn't experience the opposition until I was trying to settle on a nanny. We had the opportunity to go in with friends that had twins and use the same nanny. We went to meet her and I was commenting on how 3 babies the same age would be a challenge and she said " no way- I'm used to keeping 5 by myself at the daycare " - another story for another day. Well, when we mentioned Zoe's MDS diagnosis, her mood towards us changed. We went into the hospital for Zoe's heart surgery the next week and our friend called us there to tell us that the nanny said she didn't think she could handle 3 babies after all. Nice, huh? But it all works out in the end and God knows what He is doing. Another funny encounter & then I'll stop- I share Zoe's diagnosis whenever it comes up in conversation at work and have found many wonderful times to educate people on the difference with MDS. Several times my patients have said how comfortable and proud I sound when I talk about Zoe and even about the MDS. They said it makes them feel more comfortable with it. However, One patient asked me how Zoe was doing developmentally and mentioned that his friend has a daughter with Ds. His words were- " But she is eat up with it " (like it was cancer or something). Made me laugh and I gently explained that that probably wasn't the best expression to use in public again!! Suzanne, mom to Zoe, 14 mos, MDS > > You ladies have been amazing. We went to a wedding today and I could not wait to get home and read what your thoughts were. Thank you so much for opening up and sharing your experiences. We have felt little support from our family because when we asked if we could keep this between our family they did not do that. We felt as if we did not have time to process this information before they wanted to tell everyone. Then my mother-n-law asked us if we were embarrassed of our daughter. That comment has changed our relationship. It was like she did not get it. She did not respect that this was really hard for us. It was only a week that went by before we got people calling us or letters in the mail. Since then I have really shut down from talking to my family. Every time I try to talk to them they say she is so " typical " it is unreal. If I say something about MDS I feel as though they get annoyed. I am a first time mom learning what it is like > being a mom and also learning about MDS. We have reached out to our Down syndrome network here in Eugene, in hopes that we can get more support and meet new friends. I am hoping that meeting some moms and their families will give me the strength to be open about Andi. I have read the book A Roadmap to Holland. Which is a great book. I am also reading GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Reading these stories have made me have a connection with moms that I have not been able to have since we found out about Andi. It has been great having this support group. I want to try to make the right choices for Andi and I am so thankful that I have you amazing mom's to help us with our journey so thank you!!! If anyone one has any other thoughts or experiences I would love to hear them. > > > > > > Re: Question > > , > > Me thinks you protest too much. People might actually know you by your eye > color rather than that you are an author. The point was, it's all a part of who > you are. > > If someone was looking for me they would say I have gorgeous brown eyes, long > silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to > me that's a part of who I am. I guess I can change that with green contact > lenses. But no one would know me on sight if they were told to look for a dental > hygienist. > > Judie, mom to Christi, 29 and others > > ************ ** > Psssst...Have you heard the news? There's a new fashion blog, > plus the latest fall trends and hair styles at StyleList.com. > > (http://www.stylelis t.com/trends? ncid=aolsty00050 000000014) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 G! Do you seriously think I am an idiot? Or must I just explain everything? Excuse me,he has an eligibilireport and it is written in his IEP that he receive services from the school (2 and a half segments per week). (Anything else you need to know?) Geez.... I KNOW what IDEA says....so, now do you know of an advocate that will help me fight them pro bono? I did not think you did. For those just joining in this, I apologize for sounding snippy, but OMG have you not been listening at all to what I hve been constantly saying here that has been going on for 5 years? I am very poor (moneywise) and there is NO attorney that I can find to help me PRO BONO and very few that know the IDEA or specialize in it. I know what my son's IEP says and I know what services he is not receiving at this moment and he has been in this county since June 20 WITH this IEP that clearly indicates SPEECH SERVICES. He has not gotten what his IEP says since we have had it. Before you say it, I have spent day after day after day in IEP meetings for 3 to 5 hours at a time. I have tape recordings of these meetings. I have spent the last penny I had hiring a lawyer to come and help me and they STILL refused to follow the IEP. I feel like I am talking to a brick wall.Next... P.S. If it sound like I am angry, I am. > > > > > > > > > > Hello everyone.. > > > > > > > > > > I have a quick question that I know that some will say it is > a > > > > personal choice but I would love to hear some feedback on what > > you > > > > would do or have done. Andi (our daughter) is 6 months old and > > we > > > > found out almost four months ago that she has MDS. My husband > > and > > > I > > > > have went back and forth on whether we should be open about it > > with > > > > others. Our families know and some close friends. We have > asked > > > > that our family and friends not say anything in fear that Andi > > will > > > > be judged before anyone knows her. We did not want anyone to > > look > > > at > > > > her and try to find something wrong with her, we wanted people > to > > > > look at her for who she is. Now that we are more educated and > > feel > > > > that we have more support through books, family and friends we > > are > > > > not sure if we are making the right decision. I am always so > > > > hesitant to talk about Andi's diagnoses with others. Our > family > > is > > > > from a small town (about an hour from us) and I don't want the > > word > > > > to travel so fast that before > > > > > you know it I get phone calls asking why I haven't told > people > > > > Andi has Down syndrome. I am also in fear that if this does > not > > > > effect her that I put a label on her by telling people. A > label > > > that > > > > I might never get off. If this does not effect her and we have > > not > > > > told her about her unique diagnoses and someone else does how > > will > > > > that effect her? Or do you tell her from the beginning? Or am > I > > > > just getting way ahead of myself? Any ideas thoughts or > > > experiences > > > > will help... > > > > > > > > > > Thank you > > > > > > > > > > Hummel > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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