Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Hi Winnie! Welcome and thanks for sharing. I cannot comment on school because my son is only 9 mos. I, too, feel that he may have MDS but refuse to have him retested as it doesn't mean anything to me. He's my angel and I know that my family has been abundantly blessed by having him in our lives. My son, Zedekiah had to have heart surgery at 2 mos. PT says that he's delayed by 2 mos and I believe that the setback by surgery caused this. Good luck with school searching. I'm sure where ever he attends, he will be successful. Aisha Sent via BlackBerry from T-Mobile About school Hi everyone, I'm new to the group. Let me introduce me and my son to all of you. I'm a mother of a 2-year-old boy, who had diagnosed with MDS at birth. Right at that time, I was freak by the doctors (pediatrician or genetic doctors, etc.) while I know nothing about DS. I had never thought that I would have a baby who has DS. Everything became so negative even from the mouth of doctor. I thought they should be professional enough to give the worried parent some kind of positive power to face this shock news. However, they did not. The genetic doctor told us my son is 99% that would have DS even the test results had not been finished. She told me all the features that fit in the DS categories even though my son has very mild features. The only challenge are feeding, low muscle tone and heart defect. She even told us that you don't need to spend money on purchasing RESP because he will not go to university. My mother defended and said " some of the kids who don't have DS cannot go to University " . After giving birth, I was already very tired and needed to handle those negative message from the doctors. I almost exploded. Luckily we had a caring nurse who is dedicated to my son. During the darkest days staying in the hospital, I started to accept the fact that even he has DS, he is still my lovely boy and no matter what I will be with him. Right before he discharged from hospital, the result came back showing 10% of his cells are affected and so my son has MDS. This result means nothing to me because it's just a number. If the genetic didn't come back, I would never ask for the result. On the day of discharge, she came and BS... " he looks so much different now. He looks really sick when I first saw him... He will be fine, blah blah blah " . I really didn't want to see her. Recently, my friend asked me to retest because he felt my son doesn't have MDS. But, I refused because it really means nothing. If the result said 100%, so what? I will take care of him. It was quite tough on his feeding because of the heart defect. His breathing was bad as well. My son had a heart surgery when he was 8 months old. After the surgery, he ate better and breath better. The challenge we were facing was his physical movement that he needs lots of help in order to crawl or walk. He walked on his own 1 week after his 2nd birthday. We were so happy!!! Now he's walking around and gave us so much trouble. Another challenge is his feeding that he refused to eat chunky food. Up to this point, I still need to blend the meat. Recently he's a bit better that he started to eat banana, egg, steamed apple and noodle. He's gradually improving. I feel very blessed that God has given me this child to me and I always feel God gives special kid to special parent. I'm being one of them. The joy that my son had given me can make me forget he's different from other kids. Right now, I'm thinking about school for him. By checking with PT, OT, EI, they all said he doesn't need to attend special needs school. One of the PT said Montessori is a good choice too. Anyone put your kid to Montessori school? do you see any benefits for MDS kids to attend Montessori school? Regards, Winnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Welcome Winnie - Hi, my name is Darlene and I am the parent to 2 wonderful children one of which has MDS - School is something that I deal with almost every day - where do you live because the availability of schools is very different from country to country and in the US from State to State (and even within States) - I have in with everyone else she gets a little extra help in that she has an aide but I am reducing the aides time. She is in the " regular " science, social studies, art, gym, music, she takes Piano lessons and gymnastics. She is in Learning support for math and reading - but I think she will be out of LS for reading by 6th grade. Darlene > > > Hi everyone, > > I'm new to the group. Let me introduce me and my son to all of you. I'm a > mother of a 2-year-old boy, who had diagnosed with MDS at birth. Right at > that time, I was freak by the doctors (pediatrician or genetic doctors, > etc.) while I know nothing about DS. I had never thought that I would have a > baby who has DS. Everything became so negative even from the mouth of > doctor. I thought they should be professional enough to give the worried > parent some kind of positive power to face this shock news. However, they > did not. The genetic doctor told us my son is 99% that would have DS even > the test results had not been finished. She told me all the features that > fit in the DS categories even though my son has very mild features. The only > challenge are feeding, low muscle tone and heart defect. She even told us > that you don't need to spend money on purchasing RESP because he will not go > to university. My mother defended and said " some of the kids who don't have > DS cannot go to University " . After giving birth, I was already very tired > and needed to handle those negative message from the doctors. I almost > exploded. Luckily we had a caring nurse who is dedicated to my son. During > the darkest days staying in the hospital, I started to accept the fact that > even he has DS, he is still my lovely boy and no matter what I will be with > him. Right before he discharged from hospital, the result came back showing > 10% of his cells are affected and so my son has MDS. This result means > nothing to me because it's just a number. If the genetic didn't come back, I > would never ask for the result. On the day of discharge, she came and BS... > " he looks so much different now. He looks really sick when I first saw > him... He will be fine, blah blah blah " . I really didn't want to see her. > Recently, my friend asked me to retest because he felt my son doesn't have > MDS. But, I refused because it really means nothing. If the result said > 100%, so what? I will take care of him. > It was quite tough on his feeding because of the heart defect. His > breathing was bad as well. My son had a heart surgery when he was 8 months > old. After the surgery, he ate better and breath better. > The challenge we were facing was his physical movement that he needs lots > of help in order to crawl or walk. He walked on his own 1 week after his 2nd > birthday. We were so happy!!! Now he's walking around and gave us so much > trouble. Another challenge is his feeding that he refused to eat chunky > food. Up to this point, I still need to blend the meat. Recently he's a bit > better that he started to eat banana, egg, steamed apple and noodle. He's > gradually improving. > I feel very blessed that God has given me this child to me and I always > feel God gives special kid to special parent. I'm being one of them. The joy > that my son had given me can make me forget he's different from other kids. > Right now, I'm thinking about school for him. By checking with PT, OT, EI, > they all said he doesn't need to attend special needs school. One of the PT > said Montessori is a good choice too. Anyone put your kid to Montessori > school? do you see any benefits for MDS kids to attend Montessori school? > > Regards, > Winnie > > > -- “Knowing is not enough, we must apply. Willing is not enough, we must do.” Johann Wolfgang von Goethe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 My son is 2 1/2 and attends a fairly rigorous Mothers Day Out program with typical children his age. He LOVES it and the kids love him. Sent from 's iPhone 4 In GOD We Trust > Welcome Winnie - > > Hi, my name is Darlene and I am the parent to 2 wonderful children one of > which has MDS - School is something that I deal with almost every day - > where do you live because the availability of schools is very different from > country to country and in the US from State to State (and even within > States) - I have in with everyone else she gets a little extra help > in that she has an aide but I am reducing the aides time. She is in the > " regular " science, social studies, art, gym, music, she takes Piano lessons > and gymnastics. She is in Learning support for math and reading - but I > think she will be out of LS for reading by 6th grade. > > Darlene > > > > > >> >> >> Hi everyone, >> >> I'm new to the group. Let me introduce me and my son to all of you. I'm a >> mother of a 2-year-old boy, who had diagnosed with MDS at birth. Right at >> that time, I was freak by the doctors (pediatrician or genetic doctors, >> etc.) while I know nothing about DS. I had never thought that I would have a >> baby who has DS. Everything became so negative even from the mouth of >> doctor. I thought they should be professional enough to give the worried >> parent some kind of positive power to face this shock news. However, they >> did not. The genetic doctor told us my son is 99% that would have DS even >> the test results had not been finished. She told me all the features that >> fit in the DS categories even though my son has very mild features. The only >> challenge are feeding, low muscle tone and heart defect. She even told us >> that you don't need to spend money on purchasing RESP because he will not go >> to university. My mother defended and said " some of the kids who don't have >> DS cannot go to University " . After giving birth, I was already very tired >> and needed to handle those negative message from the doctors. I almost >> exploded. Luckily we had a caring nurse who is dedicated to my son. During >> the darkest days staying in the hospital, I started to accept the fact that >> even he has DS, he is still my lovely boy and no matter what I will be with >> him. Right before he discharged from hospital, the result came back showing >> 10% of his cells are affected and so my son has MDS. This result means >> nothing to me because it's just a number. If the genetic didn't come back, I >> would never ask for the result. On the day of discharge, she came and BS... >> " he looks so much different now. He looks really sick when I first saw >> him... He will be fine, blah blah blah " . I really didn't want to see her. >> Recently, my friend asked me to retest because he felt my son doesn't have >> MDS. But, I refused because it really means nothing. If the result said >> 100%, so what? I will take care of him. >> It was quite tough on his feeding because of the heart defect. His >> breathing was bad as well. My son had a heart surgery when he was 8 months >> old. After the surgery, he ate better and breath better. >> The challenge we were facing was his physical movement that he needs lots >> of help in order to crawl or walk. He walked on his own 1 week after his 2nd >> birthday. We were so happy!!! Now he's walking around and gave us so much >> trouble. Another challenge is his feeding that he refused to eat chunky >> food. Up to this point, I still need to blend the meat. Recently he's a bit >> better that he started to eat banana, egg, steamed apple and noodle. He's >> gradually improving. >> I feel very blessed that God has given me this child to me and I always >> feel God gives special kid to special parent. I'm being one of them. The joy >> that my son had given me can make me forget he's different from other kids. >> Right now, I'm thinking about school for him. By checking with PT, OT, EI, >> they all said he doesn't need to attend special needs school. One of the PT >> said Montessori is a good choice too. Anyone put your kid to Montessori >> school? do you see any benefits for MDS kids to attend Montessori school? >> >> Regards, >> Winnie >> >> >> > > > > -- > “Knowing is not enough, we must apply. Willing is not enough, we must do.†> Johann Wolfgang von Goethe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Hi Winnie - My 19 month old started at an infant center/preschool at the age of 12 months. At the time, we didn't know if his diagnosis but he had gross motor delays. Within a week of him being there, he started to excel. I hate to say it, but I think me doing everything for him at home wasn't giving him the chance to learn it on his own. We learned of his diagnosis at 13 months and with the help of his preschool and therapy he is doing great. In the past 6 months he has learned to roll over, crawl, pull himself up and just yesterday took his first steps. The school doesn't treat him any different which I think is ideal. He has fun and experiences things just as the other kids his age. Looking back, I think it was the best thing we did for him. > > Hi everyone, > > I'm new to the group. Let me introduce me and my son to all of you. I'm a mother of a 2-year-old boy, who had diagnosed with MDS at birth. Right at that time, I was freak by the doctors (pediatrician or genetic doctors, etc.) while I know nothing about DS. I had never thought that I would have a baby who has DS. Everything became so negative even from the mouth of doctor. I thought they should be professional enough to give the worried parent some kind of positive power to face this shock news. However, they did not. The genetic doctor told us my son is 99% that would have DS even the test results had not been finished. She told me all the features that fit in the DS categories even though my son has very mild features. The only challenge are feeding, low muscle tone and heart defect. She even told us that you don't need to spend money on purchasing RESP because he will not go to university. My mother defended and said " some of the kids who don't have DS cannot go to University " . After giving birth, I was already very tired and needed to handle those negative message from the doctors. I almost exploded. Luckily we had a caring nurse who is dedicated to my son. During the darkest days staying in the hospital, I started to accept the fact that even he has DS, he is still my lovely boy and no matter what I will be with him. Right before he discharged from hospital, the result came back showing 10% of his cells are affected and so my son has MDS. This result means nothing to me because it's just a number. If the genetic didn't come back, I would never ask for the result. On the day of discharge, she came and BS... " he looks so much different now. He looks really sick when I first saw him... He will be fine, blah blah blah " . I really didn't want to see her. Recently, my friend asked me to retest because he felt my son doesn't have MDS. But, I refused because it really means nothing. If the result said 100%, so what? I will take care of him. > It was quite tough on his feeding because of the heart defect. His breathing was bad as well. My son had a heart surgery when he was 8 months old. After the surgery, he ate better and breath better. > The challenge we were facing was his physical movement that he needs lots of help in order to crawl or walk. He walked on his own 1 week after his 2nd birthday. We were so happy!!! Now he's walking around and gave us so much trouble. Another challenge is his feeding that he refused to eat chunky food. Up to this point, I still need to blend the meat. Recently he's a bit better that he started to eat banana, egg, steamed apple and noodle. He's gradually improving. > I feel very blessed that God has given me this child to me and I always feel God gives special kid to special parent. I'm being one of them. The joy that my son had given me can make me forget he's different from other kids. > Right now, I'm thinking about school for him. By checking with PT, OT, EI, they all said he doesn't need to attend special needs school. One of the PT said Montessori is a good choice too. Anyone put your kid to Montessori school? do you see any benefits for MDS kids to attend Montessori school? > > Regards, > Winnie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Welcome Winnie! I could have written this email word for word. My daughter, Dorothy is now 8 years old and is in 3rd grade. She is included with all the other kids and is pulled out for math and reading. We had the same issues you did with docs and nurses. Dorothy walked at 2 years old, didn't swallow chuncky food until 3 years old. WE started preschool at 3 yrs and full day Kindergarten at 5 yrs. We had Dorothy in a private school for Kindergarten and half of 1st grade. Smaller classes and more attention. Then the amount of homework became way too much so we switched to the local elementary school. She struggles with social issues. WE go back and forth with PT, OT and Speech therapies. Currently we are doing all of these! If you would like to talk some more please email at alicepoholsky@... and we can talk at length. And she had open heart surgery at 4 months! WE live in York, PA Alice Poholsky Mom to Dorothy 8yrs. MDS ________________________________ To: MosaicDS Sent: Thu, October 28, 2010 11:55:59 AM Subject: About school  Hi everyone, I'm new to the group. Let me introduce me and my son to all of you. I'm a mother of a 2-year-old boy, who had diagnosed with MDS at birth. Right at that time, I was freak by the doctors (pediatrician or genetic doctors, etc.) while I know nothing about DS. I had never thought that I would have a baby who has DS. Everything became so negative even from the mouth of doctor. I thought they should be professional enough to give the worried parent some kind of positive power to face this shock news. However, they did not. The genetic doctor told us my son is 99% that would have DS even the test results had not been finished. She told me all the features that fit in the DS categories even though my son has very mild features. The only challenge are feeding, low muscle tone and heart defect. She even told us that you don't need to spend money on purchasing RESP because he will not go to university. My mother defended and said " some of the kids who don't have DS cannot go to University " . After giving birth, I was already very tired and needed to handle those negative message from the doctors. I almost exploded. Luckily we had a caring nurse who is dedicated to my son. During the darkest days staying in the hospital, I started to accept the fact that even he has DS, he is still my lovely boy and no matter what I will be with him. Right before he discharged from hospital, the result came back showing 10% of his cells are affected and so my son has MDS. This result means nothing to me because it's just a number. If the genetic didn't come back, I would never ask for the result. On the day of discharge, she came and BS... " he looks so much different now. He looks really sick when I first saw him... He will be fine, blah blah blah " . I really didn't want to see her. Recently, my friend asked me to retest because he felt my son doesn't have MDS. But, I refused because it really means nothing. If the result said 100%, so what? I will take care of him. It was quite tough on his feeding because of the heart defect. His breathing was bad as well. My son had a heart surgery when he was 8 months old. After the surgery, he ate better and breath better. The challenge we were facing was his physical movement that he needs lots of help in order to crawl or walk. He walked on his own 1 week after his 2nd birthday. We were so happy!!! Now he's walking around and gave us so much trouble. Another challenge is his feeding that he refused to eat chunky food. Up to this point, I still need to blend the meat. Recently he's a bit better that he started to eat banana, egg, steamed apple and noodle. He's gradually improving. I feel very blessed that God has given me this child to me and I always feel God gives special kid to special parent. I'm being one of them. The joy that my son had given me can make me forget he's different from other kids. Right now, I'm thinking about school for him. By checking with PT, OT, EI, they all said he doesn't need to attend special needs school. One of the PT said Montessori is a good choice too. Anyone put your kid to Montessori school? do you see any benefits for MDS kids to attend Montessori school? Regards, Winnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Winnie, Welcome to the group! Thank you for sharing your story. Just always remember that a special needs child needs as much support from us as possible and that they need us to try to guide them the best way we can. Cheryl DiMugno, 31, sister to Tina, 29 with MDS About school Hi everyone, I'm new to the group. Let me introduce me and my son to all of you. I'm a mother of a 2-year-old boy, who had diagnosed with MDS at birth. Right at that time, I was freak by the doctors (pediatrician or genetic doctors, etc.) while I know nothing about DS. I had never thought that I would have a baby who has DS. Everything became so negative even from the mouth of doctor. I thought they should be professional enough to give the worried parent some kind of positive power to face this shock news. However, they did not. The genetic doctor told us my son is 99% that would have DS even the test results had not been finished. She told me all the features that fit in the DS categories even though my son has very mild features. The only challenge are feeding, low muscle tone and heart defect. She even told us that you don't need to spend money on purchasing RESP because he will not go to university. My mother defended and said " some of the kids who don't have DS cannot go to Uni versity " . After giving birth, I was already very tired and needed to handle those negative message from the doctors. I almost exploded. Luckily we had a caring nurse who is dedicated to my son. During the darkest days staying in the hospital, I started to accept the fact that even he has DS, he is still my lovely boy and no matter what I will be with him. Right before he discharged from hospital, the result came back showing 10% of his cells are affected and so my son has MDS. This result means nothing to me because it's just a number. If the genetic didn't come back, I would never ask for the result. On the day of discharge, she came and BS... " he looks so much different now. He looks really sick when I first saw him... He will be fine, blah blah blah " . I really didn't want to see her. Recently, my friend asked me to retest because he felt my son doesn't have MDS. But, I refused because it really means nothing. If the result said 100%, so what? I will take ca re of him. It was quite tough on his feeding because of the heart defect. His breathing was bad as well. My son had a heart surgery when he was 8 months old. After the surgery, he ate better and breath better. The challenge we were facing was his physical movement that he needs lots of help in order to crawl or walk. He walked on his own 1 week after his 2nd birthday. We were so happy!!! Now he's walking around and gave us so much trouble. Another challenge is his feeding that he refused to eat chunky food. Up to this point, I still need to blend the meat. Recently he's a bit better that he started to eat banana, egg, steamed apple and noodle. He's gradually improving. I feel very blessed that God has given me this child to me and I always feel God gives special kid to special parent. I'm being one of them. The joy that my son had given me can make me forget he's different from other kids. Right now, I'm thinking about school for him. By checking with PT, OT, EI, they all said he doesn't need to attend special needs school. One of the PT said Montessori is a good choice too. Anyone put your kid to Montessori school? do you see any benefits for MDS kids to attend Montessori school? Regards, Winnie Quote Link to comment Share on other sites More sharing options...
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