Guest guest Posted September 16, 2005 Report Share Posted September 16, 2005 I'm almost not sure if I should address this to the whole group, but figure I will because it's an indication of how much having a community like this helps. Kristy, at least several times a week since we attended the MDS conference in Houston, Fred and I reference your son, Tim. We were so impressed by his intelligence and wit, but beyond that he has become a symbol of hope for us in our expectations/hopes for Anton. This is not to slight other people's kids--we just happened to end up talking to Tim and Fred photographed him/interviewed him for a project so we get to know him well. (We also really bonded with a young man with MDS named Fabian, but all of this is another story.) How thrilled would we be to have Anton do well in high school, display a passion for books and the determination/ability to write a novel. How thrilled would we be even if he did not have Tim's intellectual abilities if he were to display his sense of humor and curiosity about other people. Of course we will love and find joy in Anton however he turns out, but knowing your son has increased our sense of the possibilities... I'm also really curious about your raising Tim as a typical kid. We told everyone in our lives about Anton's diagnosis when we received it (soon after birth) and were comfortable doing so. Now that he's eight months though I have to admit I enjoy the interactions with him and strangers whom I haven't told because they are free of the stigma of DS. Strangers comment on his alertness, on how closely he watches us and how quickly he responds--very much the same comments they made about his older sister. Sometimes they do comment on his sticking his tongue out, but this seems just like a frank observation--they still don't seem to connect it to DS (or if they do they don't say so.) Friends, knowing of the diagnosis, tend to comment on how well he's doing, but they still can't seem to help treating him differently, saying things like " oh he has such a loving aura, " or " oh he's so sweet, " or " he's an angel " or " is he doing OK? " in sort of an overly gentle, babying or concerned tone of voice. I'm not blaming my friends at all--they're smart, compassionate people, but it's just so difficult for people not to respond to the label. I'm not sure what I want to ask here, but something like, for people whose child can pass as " typical " what are the advantages and disadvantages of not telling most others of the diagnosis? What are the advantages and disadvantages of not telling the child.? Again, this may be a moot point for us since we've already told everyone in our broad social circle, since Anton's sister knows and talks about Down Syndrome, and since Anton also has some features of DS. If your child has high intellectual ability and awareness like Tim, how do you and how do they get others to look past the diagnosis and/or appearance to see this? How do we as a group work so that the stigma of DS doesn't construct our children's experiences more than DS itself? Thanks & sorry to be so wordy! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2005 Report Share Posted September 16, 2005 , I am going through the same feelings that you are this week concerning the fact that we told all of our friends and family but due to the minimal characteristics, we question whether we should have put that label on her. I get the same responses from those people I've told about her diagnosis that you do. When I am in a store, I love to hear people talk about her as if she was completely normal. I know this is a very controversial subject, but I would like to ask the community how they feel about craniofacial surgery if the child is doing really well cognitively. I love my daughter tremendously and when I look at her I see only a beautiful baby but I know that there are some minimal characteristics (her ears point out, her eyes are slanted) that may automatically create a stigma when she enters her school years. I want her to have every chance in life without people automatically thinking she is delayed and unable to keep up with everyone else. Mazzu Mom to ie (21 mo.), and (6 mo. MDS) krsosno@... wrote: I'm almost not sure if I should address this to the whole group, but figure I will because it's an indication of how much having a community like this helps. Kristy, at least several times a week since we attended the MDS conference in Houston, Fred and I reference your son, Tim. We were so impressed by his intelligence and wit, but beyond that he has become a symbol of hope for us in our expectations/hopes for Anton. This is not to slight other people's kids--we just happened to end up talking to Tim and Fred photographed him/interviewed him for a project so we get to know him well. (We also really bonded with a young man with MDS named Fabian, but all of this is another story.) How thrilled would we be to have Anton do well in high school, display a passion for books and the determination/ability to write a novel. How thrilled would we be even if he did not have Tim's intellectual abilities if he were to display his sense of humor and curiosity about other people. Of course we will love and find joy in Anton however he turns out, but knowing your son has increased our sense of the possibilities... I'm also really curious about your raising Tim as a typical kid. We told everyone in our lives about Anton's diagnosis when we received it (soon after birth) and were comfortable doing so. Now that he's eight months though I have to admit I enjoy the interactions with him and strangers whom I haven't told because they are free of the stigma of DS. Strangers comment on his alertness, on how closely he watches us and how quickly he responds--very much the same comments they made about his older sister. Sometimes they do comment on his sticking his tongue out, but this seems just like a frank observation--they still don't seem to connect it to DS (or if they do they don't say so.) Friends, knowing of the diagnosis, tend to comment on how well he's doing, but they still can't seem to help treating him differently, saying things like " oh he has such a loving aura, " or " oh he's so sweet, " or " he's an angel " or " is he doing OK? " in sort of an overly gentle, babying or concerned tone of voice. I'm not blaming my friends at all--they're smart, compassionate people, but it's just so difficult for people not to respond to the label. I'm not sure what I want to ask here, but something like, for people whose child can pass as " typical " what are the advantages and disadvantages of not telling most others of the diagnosis? What are the advantages and disadvantages of not telling the child.? Again, this may be a moot point for us since we've already told everyone in our broad social circle, since Anton's sister knows and talks about Down Syndrome, and since Anton also has some features of DS. If your child has high intellectual ability and awareness like Tim, how do you and how do they get others to look past the diagnosis and/or appearance to see this? How do we as a group work so that the stigma of DS doesn't construct our children's experiences more than DS itself? Thanks & sorry to be so wordy! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2005 Report Share Posted September 16, 2005 Hi , I felt the same way when my son was born. I found out that the best thing that I could do for my son, was.....Become his advocate and educate everyone around him, from his physician, PT,speech, to my OB/GYN, my children's school and so on.... Your daughter is a blessing, and only special mom's get to have children with special needs. When I am out in public with , I am proud that he is my son, and I am his mom. In my opinion, don't worry what people think. It just ignorance. mom to 10, 8, 5 and 2yrs and 9 months MDs Re: Kristy's Tim > , > > I am going through the same feelings that you are this week concerning the > fact that we told all of our friends and family but due to the minimal > characteristics, we question whether we should have put that label on her. > I get the same responses from those people I've told about her diagnosis > that you do. When I am in a store, I love to hear people talk about her > as if she was completely normal. I know this is a very controversial > subject, but I would like to ask the community how they feel about > craniofacial surgery if the child is doing really well cognitively. I > love my daughter tremendously and when I look at her I see only a > beautiful baby but I know that there are some minimal characteristics (her > ears point out, her eyes are slanted) that may automatically create a > stigma when she enters her school years. I want her to have every chance > in life without people automatically thinking she is delayed and unable to > keep up with everyone else. > Mazzu > Mom to ie (21 mo.), and (6 mo. MDS) > > krsosno@... wrote: > I'm almost not sure if I should address this to the whole group, but > figure > I will because it's an indication of how much having a community like this > helps. Kristy, at least several times a week since we attended the MDS > conference in Houston, Fred and I reference your son, Tim. We were so > impressed by > his intelligence and wit, but beyond that he has become a symbol of hope > for us > in our expectations/hopes for Anton. This is not to slight other people's > kids--we just happened to end up talking to Tim and Fred photographed > him/interviewed him for a project so we get to know him well. (We also > really bonded > with a young man with MDS named Fabian, but all of this is another > story.) How > thrilled would we be to have Anton do well in high school, display a > passion > for books and the determination/ability to write a novel. How thrilled > would > we be even if he did not have Tim's intellectual abilities if he were to > display his sense of humor and curiosity about other people. Of course we > will > love and find joy in Anton however he turns out, but knowing your son has > increased our sense of the possibilities... > > I'm also really curious about your raising Tim as a typical kid. We told > everyone in our lives about Anton's diagnosis when we received it (soon > after > birth) and were comfortable doing so. Now that he's eight months though I > have > to admit I enjoy the interactions with him and strangers whom I haven't > told > because they are free of the stigma of DS. Strangers comment on his > alertness, > on how closely he watches us and how quickly he responds--very much the > same > comments they made about his older sister. Sometimes they do comment on > his > sticking his tongue out, but this seems just like a frank > observation--they > still don't seem to connect it to DS (or if they do they don't say so.) > Friends, knowing of the diagnosis, tend to comment on how well he's > doing, but they > still can't seem to help treating him differently, saying things like " oh > he > has such a loving aura, " or " oh he's so sweet, " or " he's an angel " or " is > he > doing OK? " in sort of an overly gentle, babying or concerned tone of > voice. > I'm not blaming my friends at all--they're smart, compassionate people, > but > it's just so difficult for people not to respond to the label. I'm not > sure > what I want to ask here, but something like, for people whose child can > pass > as " typical " what are the advantages and disadvantages of not telling > most > others of the diagnosis? What are the advantages and disadvantages of not > telling the child.? Again, this may be a moot point for us since we've > already told > everyone in our broad social circle, since Anton's sister knows and talks > about Down Syndrome, and since Anton also has some features of DS. If your > child has high intellectual ability and awareness like Tim, how do you and > how do > they get others to look past the diagnosis and/or appearance to see this? > How > do we as a group work so that the stigma of DS doesn't construct our > children's experiences more than DS itself? > > Thanks & sorry to be so wordy! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Dear , I agree that Tim is a real symbol of hope for many of us. Bob and I have mainstreaming Jonas as our goal in the next 3 years. We are waiting on Kindergarten until we have to send him so that he has the best chance at successfully being fully mainstreamed. If we can't manage it, then we will seek special services. If I can avoid dealing with the administration every year for a special program for Jonas, my prayers would be answered. We believe he will do well, and are proceeding to home teach him just as we did his brother in his preschool years, preparing him for school. I wanted to address your wonderings about the telling and not telling, knowing .vs. not knowing. I did not have an amniocentesis when I was pregnant with Jonas by my own choosing. People ask me that all the time. I am personally glad I did not know ahead of time. He was premature. I had 10 days of holding my 4 pound perfect miracle with no thoughts of DS at all. I developed a strong bond in those days that was free from any of the thoughts that hit me when I found out about his diagnosis. If I knew ahead of time, I do not think I would have ever been able to look at him one day of his life without thinking about the DS. He is the same miracle he was for those first 10 days, but I hold those days in my heart as some of the most precious gifts of my life. He is not Down syndrome. I don't like it when people say to me, " I know a person who has a child who is downs like Jonas... " My child is a little boy who has MDS, he is not a disease! It does not define him. I was reminded by a really good doctor when Jonas was very little that DS is only one factor that may determine some of his future abilities, but the parents he has, the influence of our " good genes " is there too! Not to mention the influence of caring parents and a bright sibling to model his behavior after. When we left the NICU on Jonas' 22nd day of life, a doctor came to us and told us that he felt so good about Jonas' future because he knew that Bob and I would do all we could to see that he has a very good life and does as well as he can. I have returned there once to visit as they encouraged us to do. That doctor cried when he saw Jonas because he was so happy to see him doing so well. We make sure that everyone in our families know that we have big goals for Jonas, and everyone encourages him so much. They all share in our joy at his accomplishments. We need them to know for the support they lend to us, but everyone does pretty well about treating him like the rest of the kids in our big family. (I am one of six children, so there have been 11 grandchildren born to my parents in all). Jonas is the baby though, and so is in the spotlight for that reason if no other. I enjoy the reactions of strangers too. Mostly now they want to know how old he is because he is not speaking back to them as they expect him to. We are not at the point of full sentences yet. I can tell they do not understand why he is not talking yet like their rambling 3 year old. Sometimes I explain, sometimes not, depending on the situation and my mood I guess. Hugs to Anton! Blessings, Barb Martz Mom to Jonas (MDS) 4 yrs. 10 mos. & 10 ---- Original Message ----- To: MosaicDS <mailto:MosaicDS > Sent: Friday, September 16, 2005 10:59 AM Subject: Re: Kristy's Tim I'm almost not sure if I should address this to the whole group, but figure I will because it's an indication of how much having a community like this helps. Kristy, at least several times a week since we attended the MDS conference in Houston, Fred and I reference your son, Tim. We were so impressed by his intelligence and wit, but beyond that he has become a symbol of hope for us in our expectations/hopes for Anton. This is not to slight other people's kids--we just happened to end up talking to Tim and Fred photographed him/interviewed him for a project so we get to know him well. (We also really bonded with a young man with MDS named Fabian, but all of this is another story.) How thrilled would we be to have Anton do well in high school, display a passion for books and the determination/ability to write a novel. How thrilled would we be even if he did not have Tim's intellectual abilities if he were to display his sense of humor and curiosity about other people. Of course we will love and find joy in Anton however he turns out, but knowing your son has increased our sense of the possibilities... I'm also really curious about your raising Tim as a typical kid. We told everyone in our lives about Anton's diagnosis when we received it (soon after birth) and were comfortable doing so. Now that he's eight months though I have to admit I enjoy the interactions with him and strangers whom I haven't told because they are free of the stigma of DS. Strangers comment on his alertness, on how closely he watches us and how quickly he responds--very much the same comments they made about his older sister. Sometimes they do comment on his sticking his tongue out, but this seems just like a frank observation--they still don't seem to connect it to DS (or if they do they don't say so.) Friends, knowing of the diagnosis, tend to comment on how well he's doing, but they still can't seem to help treating him differently, saying things like " oh he has such a loving aura, " or " oh he's so sweet, " or " he's an angel " or " is he doing OK? " in sort of an overly gentle, babying or concerned tone of voice. I'm not blaming my friends at all--they're smart, compassionate people, but it's just so difficult for people not to respond to the label. I'm not sure what I want to ask here, but something like, for people whose child can pass as " typical " what are the advantages and disadvantages of not telling most others of the diagnosis? What are the advantages and disadvantages of not telling the child.? Again, this may be a moot point for us since we've already told everyone in our broad social circle, since Anton's sister knows and talks about Down Syndrome, and since Anton also has some features of DS. If your child has high intellectual ability and awareness like Tim, how do you and how do they get others to look past the diagnosis and/or appearance to see this? How do we as a group work so that the stigma of DS doesn't construct our children's experiences more than DS itself? Thanks & sorry to be so wordy! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.