Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Kristy, I'm new to the group and am not familiar with what topics you will be covering in your book. Could you send me a breif outline so I can get an idea of the approach you are taking and the basic subject matter covered? I have a daughter who is 17 with mds. I was advised by the geneticist who diagnosed her at age 2 not to tell anyone of her condition except her physician and a couple of family members. I have been very happy that I kept her condition a secret, but wonder if other parents have done the same. I did it because the geneticist said she would be branded retarded and he felt her development was good, and she would not reach her full potential if everyone lowered their expectations of her cause she had downs syndrome. He said no one would hear the " mosaic " , just the " downs syndrome " and that would be that. I look forward to hearing from you, and communicating with others from the group. Terri --- kristy colvin wrote: > Hi Everyone, > As most of you know, I am writing a book to help > parents and profesionals better understand MDS. > I want to make sure that I cover all topics > involving > MDS. I already have a bunch of things I am covering, > but I don't want to leave anything out. > If there is anything that you know you have > questions > or concerns about, or something that you used to > have > concerns about but you have resolved them, please > let > me know. Any comments are welcome! > Thanks, > Kristy > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Terri, Welcome to our group. I am trying to cover all topics of MDS and raising our children. So far what I have covered, and many of these I have done research and taken polls from parents of children with MDS,are the following: Developmental milestones, Speech, Occupational, and Physical therapy, Behavior issues with children with MDS, Special Education and Regular Ed, Reading and Math, Thyroid, Heart, Age of Mother when child was born, sensory dysfunction, adhd, asperger's syndrome, explanation of chromosones,and potty training. I may have more, but that is all I can think of right now! lol My son with MDS is 16. We never really told alot of people about it either. Not because we had a great doctor that advised us against it, but because, as you say, we were afraid that he would be labled. I had told some teachers in some of his years, but others I did not. And when I did tell a teacher, I would wait until they got to know him real well first. This year I asked one of the teacher's that I work with if she thought it was a good idea to tell a teacher about a disablity, and she said it totally depended on the teacher. She said that some teachers would treat the child differently because of it, and it is always best to get to know the teacher first. I actually had a special ed diagnostian tell me when Tim was in 1st grade, that I must be mistaken, because she was sure that he had 'OUTGROWN' his down syndrome! I was furious that a diagnostian could be so stupid and boy, did I let her know my feelings! She was not employed there the next year. Until a few years ago, when I became involved in this group, I never really even thought about Tim having MDS. We always treated him like a normal kid and expected the same from him as we did his brothers. I believe that is one reason he is who he is today. He is as normal a teenager as possible! We do have maturity issues, but other than that he is a regular 16 yr old boy. I do know that when Tim was diagnosed, I wanted desperately to be able to read a book on mds. There was absoulutly nothing, and other than Dr. -Cook's MDS study, there is still nothing. That is why I am writing this book now. I want new parents to be able to go to the library ,like I did so many years ago, and actually feel releaved that there is something there about MDS and they are not all alone! Terri, please let me know where you live. I may can match you with a parent close to you. I look forward to hearing from you soon. Kristy --- Terri wrote: > Kristy, > > I'm new to the group and am not familiar with what > topics you will be covering in your book. Could you > send me a breif outline so I can get an idea of the > approach you are taking and the basic subject matter > covered? > I have a daughter who is 17 with mds. I was advised > by the geneticist who diagnosed her at age 2 not to > tell anyone of her condition except her physician > and > a couple of family members. I have been very happy > that I kept her condition a secret, but wonder if > other parents have done the same. I did it because > the geneticist said she would be branded retarded > and > he felt her development was good, and she would not > reach her full potential if everyone lowered their > expectations of her cause she had downs syndrome. He > said no one would hear the " mosaic " , just the " downs > syndrome " and that would be that. > > I look forward to hearing from you, and > communicating > with others from the group. > > Terri > > --- kristy colvin wrote: > > Hi Everyone, > > As most of you know, I am writing a book to help > > parents and profesionals better understand MDS. > > I want to make sure that I cover all topics > > involving > > MDS. I already have a bunch of things I am > covering, > > but I don't want to leave anything out. > > If there is anything that you know you have > > questions > > or concerns about, or something that you used to > > have > > concerns about but you have resolved them, please > > let > > me know. Any comments are welcome! > > Thanks, > > Kristy > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Terri - I too am new to the group and have a daughter that is 8. Diagnoised when she was 3. We are also keeping it a secret and have only told family memebers. We had ran into some problems when she was tested for kingergarten. The teacher had " labeled " her by some features in her face. (Just minor slanting in the eyes) Well, she wasn't very nice to her during the testing and to be honest, had already judged her before the testing was complete and WOULDN'T FINISH testing her. Talk about a MAD MOMMA! Now, she is going to a really great school that knows her condition and has a program through the State that is really helping her in every way they can. She will be in second grade this year and is doing really well. I did hold her back a year and glad that I did. Welcome to the group and look forward to hearing from you more. --- Original Message --- To: MosaicDS Subject: Re: MDS Book >Kristy, > >I'm new to the group and am not familiar with what >topics you will be covering in your book. Could you >send me a breif outline so I can get an idea of the >approach you are taking and the basic subject matter >covered? >I have a daughter who is 17 with mds. I was advised >by the geneticist who diagnosed her at age 2 not to >tell anyone of her condition except her physician and >a couple of family members. I have been very happy >that I kept her condition a secret, but wonder if >other parents have done the same. I did it because >the geneticist said she would be branded retarded and >he felt her development was good, and she would not >reach her full potential if everyone lowered their >expectations of her cause she had downs syndrome. He >said no one would hear the " mosaic " , just the " downs >syndrome " and that would be that. > >I look forward to hearing from you, and communicating >with others from the group. > >Terri > >--- kristy colvin wrote: >> Hi Everyone, >> As most of you know, I am writing a book to help >> parents and profesionals better understand MDS. >> I want to make sure that I cover all topics >> involving >> MDS. I already have a bunch of things I am covering, >> but I don't want to leave anything out. >> If there is anything that you know you have >> questions >> or concerns about, or something that you used to >> have >> concerns about but you have resolved them, please >> let >> me know. Any comments are welcome! >> Thanks, >> Kristy >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 In a message dated 6/14/02 3:45:26 PM Afghanistan Standard Time, baggott@... writes: << I have been told by the geneticists not to worry and not to bother with infant stimulation. I just hate to avoid an early intervention program if she would benefit. >> Hi Tina: Welcome to the group. My daughter who is now 8 years old was diagnosed with an amnio and hit all of her milestones within normal limits. She is now finishing up third grade and does not qualify for special education services at this time. The most obvious limitation that the mds seems to have on her is in her ability to use logic and problem solve. I must tell you that I did get all the early intervention services I could from the time she was 2 months old until she entered kindergarten. Once in elementary school her services were drastically cut. She seems to be keeping up well academically though she does have some weaknesses. Everyone has to make the decision for themselves whether or not to go ahead with early intervention. Some like to take a wait and see approach and if delays start to develop then get the services. I was more proactive and choose the services in order to avoid or minimize the delays. Early intervention will never hurt your child and would benefit any child, delays or not. Again, welcome to the group. I look forward to hearing more about Charlotte. ann (Mom to , mds 8 years old and 12 years old, an age I don't like very much!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Kristy- I am new to the group. My daughter, Charlotte, was diagnosed at birth with mds, based only on blood karyotyping. We actually have an unusual situation as my amniocentesis showed mosaicism for trisomy 13. Our daughter has no visible stigmata of any syndrome, but we thought we'd confirm the issue with blood work. The blood work didn't show any trisomy 13, but did show about 33% trisomy 21. She's also had a skin biopsy showing 25% mds, but no abnormal chromosome 13. They have gone back and confirmed the amniocentesis to make sure it was correct. Anyway, Charlotte is now 3 months old and seems to be developing well, if not ahead of schedule. She can nearly sit unassisted and is feeding herself with a bottle. Will your book cover the folks with children with mds diagnosed only by amniocentesis who seem to have no limitations? I'd be interested to know how many people thought their child was developing well and had no physical stigmata of Downs and found developmental issues as their child got older. I have been told by the geneticists not to worry and not to bother with infant stimulation. I just hate to avoid an early intervention program if she would benefit. Thanks for organizing this site and working on the book. It has been helpful. Tina > Hi Everyone, > As most of you know, I am writing a book to help > parents and profesionals better understand MDS. > I want to make sure that I cover all topics involving > MDS. I already have a bunch of things I am covering, > but I don't want to leave anything out. > If there is anything that you know you have questions > or concerns about, or something that you used to have > concerns about but you have resolved them, please let > me know. Any comments are welcome! > Thanks, > Kristy > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Tina, Early intervention can't hurt, so I would error on the side of doing everything you can for your child..... in my ever so humble opinion, of course. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Tina, Welcome to our group. There are some people on our group that have been diagnosed through and Amnio. It seems to me that the doctors just somehow made a mistake on your Amnio when the diagnosed mosaisism trisomy 13. Many of our children are very high functioning, but at 3 months old there is not a lot of developmental expectations. There are many doctors that do not know very much about MDS. The doctors hear Down Syndrome and expect the child to act the same as a child with DS. When they do not see all the characteristics of DS they just don't know how to react to it!I do not know a certain statistic, but, I would say that MOST children with MDS have a speech delay. And, although physical therapy may not be required with your daughter, I would say that occupational therapy would benefit her greatly. 99% of the time it is best to go with your instincts rather than a doctor recommendation. My son developed normally untill it came to walking and talking. If he had had therapy at birth, he probably would have walked and communicated on time.Because MDS is so rare, most doctors have never even heard of it, much less know what to do about it! There are many parents in our group that have their own horror stories concerning doctors. Please let me know where you live, and I can help you get into an ECI program. Tina, this really is vital to your child's development, and since she sounds like she has such a good start, why wait till there is a problem, when you could " head off " any delay. I would also like the name and phone number of your geneticist. I would be very interested in talking to them about MDS. As for karyotyping during an amnio, I may cover some of that in my book. To make sure that we are clear on this, the process of karyotyping, be it amnio or when the child is born, would have no baring on their development. I can not take credit for any of the web sites or the e-group. The ones who set up the www.mosaicdownsyndrome.com web site were Bree Prive and Beets. The one who set up the IMDSA web site www.imdsa.com is Twomey. I came into this group back in 1999, right after the site was made. We went from just a handful of members to over 250 and counting! Last year we decided to form a nonprofit organization to help others with MDS. Currently we are organizing a convention for November 2003 in Florida. This will be a very exciting and informative convention. I hope to see you there! If you have any more questions, please do not hesitate to ask! Kristy Colvin President IMDSA --- cbaggott2002 wrote: > Kristy- > I am new to the group. My daughter, Charlotte, was > diagnosed at > birth with mds, based only on blood karyotyping. We > actually have > an unusual situation as my amniocentesis showed > mosaicism for > trisomy 13. Our daughter has no visible stigmata of > any syndrome, > but we thought we'd confirm the issue with blood > work. The blood > work didn't show any trisomy 13, but did show about > 33% trisomy 21. > She's also had a skin biopsy showing 25% mds, but no > abnormal > chromosome 13. They have gone back and confirmed > the amniocentesis > to make sure it was correct. > > Anyway, Charlotte is now 3 months old and seems to > be developing > well, if not ahead of schedule. She can nearly sit > unassisted and > is feeding herself with a bottle. Will your book > cover the folks > with children with mds diagnosed only by > amniocentesis who seem to > have no limitations? > > I'd be interested to know how many people thought > their child was > developing well and had no physical stigmata of > Downs and found > developmental issues as their child got older. I > have been told by > the geneticists not to worry and not to bother with > infant > stimulation. I just hate to avoid an early > intervention program if > she would benefit. > > Thanks for organizing this site and working on the > book. It has > been helpful. > > Tina > > > > Hi Everyone, > > As most of you know, I am writing a book to help > > parents and profesionals better understand MDS. > > I want to make sure that I cover all topics > involving > > MDS. I already have a bunch of things I am > covering, > > but I don't want to leave anything out. > > If there is anything that you know you have > questions > > or concerns about, or something that you used to > have > > concerns about but you have resolved them, please > let > > me know. Any comments are welcome! > > Thanks, > > Kristy > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Dear Tina- My son was diagnosed with MDS only thru amnio- His amnio showed 27% or so of triple cells. When he was born I had his cord blood sampled and it came back only 11% MDS. is 10 months old. He started Early Intervention at 6 weeks. sat on his own by 4months, during months 5,6 & 7- started crawling, pulling himself up, standing and trying to walk. At just 10 months he is running. He barely crawls anymore. He is way ahead of schedule - but would I say he doesn't need Early Intervention- Heck NO! They are constantly showing me things to do with him. When he first started pulling up- he was doing it wrong- they showed me how to adjust his leg and he did it real quick His therapist brought puzzles last week - yes puzzles!! I laughed when she took them out of the bag- I said he'll dump out the pieces and make alot of noise with them- or throw them- Guess what - within minutes she had focused taking the pieces out and putting them back in!!!!! Never would I have explored this at such an early age- she did and know its one of his favorite activities. I was concerned about his language development because he only says daddy. He babbles alot and repeats grunts and groans but if you say Ba- he won't repeat it. She has me know playing games to get him to repeat more letter sounds. Its working! He just started a saying Dun- for down- instead of groaning and arching his back when he wants to get down from his chair or from our arms. All his doctors and therapist agree that noone would have picked up the MDS without the amnio. He has no physical features, and by no means any delays right now. I'm just grateful for the amnio because I know in my heart the time he is spending in Early Intervention is critical to his development- especially language. I guess this is a very long long winded - YES! Early Intervention is important even if there are no delays seen. If you have questions feel free to email Ellen Kugel- Mom to (MDS-10months) Kendall(5), (11) & Josh(12) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Dear Tina, Greetings and peace to you and your family! So happy you have joined this little family of friends and folks who are so great to help with questions and to support you when you need it. I have considered the folks here to be a true life raft for me on so many issues and occasions. I can't stress to you enough how much I think your genetic doctor has made a mistake by directing you away from early intervention. Jonas is our son and he is doing super. He is 1 1/2 years old now, and we started him into Early Intervention as soon as we got him home from the hospital. I know that having the physical therapist here has helped me to know things to do for him that I could have never dreamed up or read on my own. He is developing very well and is walking independently for short distances right now. Somebody said to me once that maybe we should wait and see if Jonas needed Early Intervention. I looked at it this way...By the time we realize that he "needed" it, we will be too late to get it for him. I do not know where you live. We are in Western Pennsylvania, USA. If you have EI available to you in your area, check into it. Talk to them. You hurt nothing by doing the EI and finding our later you may have done fine without it. At such a young age though, you have no way of knowing where delays may turn up for Charlotte in the future. Some of the folks in this group did not find out about the MDS until their children where school age and quite delayed. At that point, you cannot go back and redo. I give the Early Intervention program "two thumbs way up!" Good luck in your decision making, and kisses to baby Charlotte! Blessings to Your family, Barb Martz Mom to Jonas 1 1/2 (MDS) & 7 Re: MDS Book Kristy-I am new to the group. My daughter, Charlotte, was diagnosed atbirth with mds, based only on blood karyotyping. We actually havean unusual situation as my amniocentesis showed mosaicism fortrisomy 13. Our daughter has no visible stigmata of any syndrome,but we thought we'd confirm the issue with blood work. The bloodwork didn't show any trisomy 13, but did show about 33% trisomy 21.She's also had a skin biopsy showing 25% mds, but no abnormalchromosome 13. They have gone back and confirmed the amniocentesisto make sure it was correct.Anyway, Charlotte is now 3 months old and seems to be developingwell, if not ahead of schedule. She can nearly sit unassisted andis feeding herself with a bottle. Will your book cover the folkswith children with mds diagnosed only by amniocentesis who seem tohave no limitations?I'd be interested to know how many people thought their child wasdeveloping well and had no physical stigmata of Downs and founddevelopmental issues as their child got older. I have been told bythe geneticists not to worry and not to bother with infantstimulation. I just hate to avoid an early intervention program ifshe would benefit.Thanks for organizing this site and working on the book. It hasbeen helpful.Tina> Hi Everyone,> As most of you know, I am writing a book to help> parents and profesionals better understand MDS.> I want to make sure that I cover all topics involving> MDS. I already have a bunch of things I am covering,> but I don't want to leave anything out.> If there is anything that you know you have questions> or concerns about, or something that you used to have> concerns about but you have resolved them, please let> me know. Any comments are welcome!> Thanks,> Kristy>> __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Tina, I can not agree with Barb more. I thought that we wouldn't need Early Intervention Speech Therapy because when she started was only 3 months and I assumed she would learn to talk on her own. She is now 3.5 years and has had about a year of speech therapy and still only has less than 10 words - I wish I had started it at the beginning - maybe it would be a different outcome. We did start PT and OT at the beginning and eventually they discontinued OT as she didn't need it any longer. Please consider it. If they feel Charlotte doesn't need it - they will discontinue. Darlene (Mom to (5) and (3.5)) -----Original Message-----From: Martz Sent: Thursday, June 20, 2002 12:41 AMTo: MosaicDS Subject: Re: Re: MDS Book Dear Tina, Greetings and peace to you and your family! So happy you have joined this little family of friends and folks who are so great to help with questions and to support you when you need it. I have considered the folks here to be a true life raft for me on so many issues and occasions. I can't stress to you enough how much I think your genetic doctor has made a mistake by directing you away from early intervention. Jonas is our son and he is doing super. He is 1 1/2 years old now, and we started him into Early Intervention as soon as we got him home from the hospital. I know that having the physical therapist here has helped me to know things to do for him that I could have never dreamed up or read on my own. He is developing very well and is walking independently for short distances right now. Somebody said to me once that maybe we should wai! t and see if Jonas needed Early Intervention. I looked at it this way...By the time we realize that he "needed" it, we will be too late to get it for him. I do not know where you live. We are in Western Pennsylvania, USA. If you have EI available to you in your area, check into it. Talk to them. You hurt nothing by doing the EI and finding our later you may have done fine without it. At such a young age though, you have no way of knowing where delays may turn up for Charlotte in the future. Some of the folks in this group did not find out about the MDS until their children where school age and quite delayed. At that point, you cannot go back and redo. I give the Early Intervention program "two thumbs way up!" Good luck in your decision making, and kisses to baby Charlotte! & nbs! p; Blessings to Your family, Barb Martz & nb! sp; Mom to Jonas 1 1/2 (MDS) & 7 Re: MDS Book Kristy-I am new to the group. My daughter, Charlotte, was diagnosed atbirth with mds,! based only on blood karyotyping. We actually havean unusual situation as my amniocentesis showed mosaicism fortrisomy 13. Our daughter has no visible stigmata of any syndrome,but we thought we'd confirm the issue with blood work. The bloodwork didn't show any trisomy 13, but did show about 33% trisomy 21.She's also had a skin biopsy showing 25% mds, but no abnormalchromosome 13. They have gone back and confirmed the amniocentesisto make sure it was correct.Anyway, Charlotte is now 3 months old and seems to be developingwell, if not ahead of schedule. She can nearly sit unassisted andis feeding herself with a bottle. Will your book cover the folkswith children with mds diagnosed only by amniocentesis who seem tohave no limitations?I'd be interested to know how many people thought their child wasdeveloping well and had no physical stigmata of Downs and founddevelopmental is! sues as their child got older. I have been told bythe geneticists not to worry and not to bother with infantstimulation. I just hate to avoid an early intervention program ifshe would benefit.Thanks for organizing this site and working on the book. It hasbeen helpful.Tina> Hi Everyone,> As most of you know, I am writing a book to help> parents and profesionals better understand MDS.> I want to make sure that I cover all topics involving> MDS. I already have a bunch of things I am covering,> but I don't want to leave anything out.> If there is anything that you know you have questions> or concerns about, or something that you used to have> concerns about but you have resolved them, please let> me know. Any comments are welcome!> Thanks,> Kristy>> _______! ___________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Dear Tina, I can't stress enough how inportant it is to start early intervention. I was one of the people Barb was talking about who didn't find out Jakob had MDS until he was Prekindergarten (he doesn't look like he has MDS at all). We did know at 3 years of age that he had delays and this is when he started EI in our home, but I can't help but wonder if he had started at birth or shortly after that maybe some of his problems with gross/fine motor skills or even the speech delays wouldn't have been such a problem. (He wasn't sentencing at 3 and could not hold a spoon or fork to eat) He is doing much better now, thanks to all the EI, speech, and occupational therapys he has had and will probably continue to have for a long time to come. We are all here to help and offer advice so please feel free to e-mail me at any time. Best of luck and take care! (Mom to Jakob,7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Dear , Glad to hear from you, and indeed welcome to the group! I am so sorry to hear that you have had bad experiences with the school for your daughter. Our son Jonas is just 1 1/2 years old with MDS, and so we have not had any dealings with the school for him yet, but we have been put through the "wringer" by the school with regard to our 7 year old son . He is a very gifted child, and getting them to test him was not easy even though the law in Pennsylvania, USA says that the school must test upon our written request. It was kind of like they were able to treat us like we did not know what we were talking about and like we were somehow simply prideful parents as long as they did not have the testing in their files! I don't understand why folks choose to be in the profession of education if they can't bring themselves to really love or care about the children they work with? I have been the "mad momma" more than once myself! I am so happy you have found a good school for your daughter, and that she is doing well. By the time Jonas gets to the school we are dealing with for , they will certainly be as sick of my face as I will be of their rudeness. We tell folks here and there about Jonas and generally my entire church family knows about him due to a heart condition he has and the prayers we have asked for him. I guess our hold out is what we will tell the school when the time comes, but I have a short 1 1/2 years before we need to decide that. Of course my entire extended family knows all about Jonas too. He is a bright light around this place, and we are very blessed to have these two boys to raise up! Tonight they had a very long session of rolling about on the living room carpet laughing themselves silly. Now that is what a Mom wants to see and hear! Many blessings to your family and I look forward with joy in learning more about your daughter. Welcome again. You can check out Jonas' story on the personal stories section at www.mosaicdownsyndrome.com , he is quite a miracle child. Barb Martz Mom to Jonas 1 1/2 (MDS) & 7 Re: MDS Book Terri -I too am new to the group and have a daughter that is8. Diagnoised when she was 3. We are also keeping ita secret and have only told family memebers. We hadran into some problems when she was tested forkingergarten. The teacher had "labeled" her by somefeatures in her face. (Just minor slanting in theeyes) Well, she wasn't very nice to her during thetesting and to be honest, had already judged herbefore the testing was complete and WOULDN'T FINISHtesting her. Talk about a MAD MOMMA! Now, she isgoing to a really great school that knows hercondition and has a program through the State that isreally helping her in every way they can. She will bein second grade this year and is doing really well. Idid hold her back a year and glad that I did.Welcome to the group and look forward to hearing fromyou more.--- Original Message ---To: MosaicDS Subject: Re: MDS Book>Kristy,>>I'm new to the group and am not familiar with what>topics you will be covering in your book. Could you>send me a breif outline so I can get an idea of the>approach you are taking and the basic subject matter>covered?>I have a daughter who is 17 with mds. I was advised>by the geneticist who diagnosed her at age 2 not to>tell anyone of her condition except her physician and>a couple of family members. I have been very happy>that I kept her condition a secret, but wonder if>other parents have done the same. I did it because>the geneticist said she would be branded retarded and>he felt her development was good, and she would not>reach her full potential if everyone lowered their>expectations of her cause she had downs syndrome. He>said no one would hear the "mosaic", just the "downs>syndrome" and that would be that.>>I look forward to hearing from you, and communicating>with others from the group.>>Terri>>--- kristy colvin wrote:>> Hi Everyone,>> As most of you know, I am writing a book to help>> parents and profesionals better understand MDS.>> I want to make sure that I cover all topics>> involving>> MDS. I already have a bunch of things I am covering,>> but I don't want to leave anything out.>> If there is anything that you know you have>> questions>> or concerns about, or something that you used to>> have>> concerns about but you have resolved them, please>> let>> me know. Any comments are welcome!>> Thanks,>> Kristy>>>> __________________________________________________>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Dear Terri and , My name is and our son Jakob is 7 years old and was diagnosed with MDS at 5 years old (prekindergarten). He does not look at all like he has MDS, but I have to say he does act different than other kids his age. His pediatrician and his neurodevelopmental doctor both agree that we should not tell people about him, except in school situations where he will need extra help. We have only chose to tell a very few people in our family about his diagnosis. And so far I think it is a good idea, because we do not want him "labeled". WELCOME TO OUR GROUP!!! We all support each other through some very tough times. You'll find that anytime you post a question or just need to vent we are all here for you and will respond with a similar situation we have been in and how we dealt with it. I only joined this group in April of this year and I wish I had known about this website back when Jakob was first diagnosed. My husband and I went through some very difficult times. I was a total wreck for I can't tell you how long, but we made it through and now take one day at a time. Thank God for all of these people (our extended family). I don't feel so alone anymore! Feel free to e-mail me anytime. Take care! (Mom to Jakob,7) Re: MDS Book Terri -I too am new to the group and have a daughter that is8. Diagnoised when she was 3. We are also keeping ita secret and have only told family memebers. We hadran into some problems when she was tested forkingergarten. The teacher had "labeled" her by somefeatures in her face. (Just minor slanting in theeyes) Well, she wasn't very nice to her during thetesting and to be honest, had already judged herbefore the testing was complete and WOULDN'T FINISHtesting her. Talk about a MAD MOMMA! Now, she isgoing to a really great school that knows hercondition and has a program through the State that isreally helping her in every way they can. She will bein second grade this year and is doing really well. Idid hold her back a year and glad that I did.Welcome to the group and look forward to hearing fromyou more.--- Original Message ---To: MosaicDS Subject: Re: MDS Book>Kristy,>>I'm new to the group and am not familiar with what>topics you will be covering in your book. Could you>send me a breif outline so I can get an idea of the>approach you are taking and the basic subject matter>covered?>I have a daughter who is 17 with mds. I was advised>by the geneticist who diagnosed her at age 2 not to>tell anyone of her condition except her physician and>a couple of family members. I have been very happy>that I kept her condition a secret, but wonder if>other parents have done the same. I did it because>the geneticist said she would be branded retarded and>he felt her development was good, and she would not>reach her full potential if everyone lowered their>expectations of her cause she had downs syndrome. He>said no one would hear the "mosaic", just the "downs>syndrome" and that would be that.>>I look forward to hearing from you, and communicating>with others from the group.>>Terri>>--- kristy colvin wrote:>> Hi Everyone,>> As most of you know, I am writing a book to help>> parents and profesionals better understand MDS.>> I want to make sure that I cover all topics>> involving>> MDS. I already have a bunch of things I am covering,>> but I don't want to leave anything out.>> If there is anything that you know you have>> questions>> or concerns about, or something that you used to>> have>> concerns about but you have resolved them, please>> let>> me know. Any comments are welcome!>> Thanks,>> Kristy>>>> __________________________________________________>> Quote Link to comment Share on other sites More sharing options...
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