Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 In a message dated 9/14/2008 6:39:58 PM Eastern Daylight Time, eig6@... writes: guess I cannot really submit a story as we have had massive medical issues and huge school issues, but the question I would encourage you to ask the parents who, like me, haven't had it easy is: " Given the knowledge of how hard it was going to be, would you choose to do it again? " WELL SAID!! **************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 Everywhere I look, especially now since down syndrome is getting more media attention because of Palin, I see stories about families with children with DS that are sometimes positive but almost always tempered with how heartbreaking, heartwrenching, lonely, sad and difficult having a child with down syndrome is. How the costs are huge with all the medical bills and therapies are. What what a horrible struggle it is for inclusion, etc. When I read these things over and over again I think no wonder so many women are aborting. The fear mongering is incredible and I believe there is a media bias to want to tell the worst stories (or at least sad in some way) they can find. It makes for more dramatic reading. I know that there are other families out there, like mine, who are NOT having a hard time of it. Who are having a relatively easy time with no struggle. I know I am not alone when I say it is a joy to raise my child with down syndrome and we do not feel lonely and our hearts are not breaking. We are not struggling with the system either. We are not always fighting for inclusion and our lives are not revolving around therapies. Maybe we are in the minority but I think our stories are just as valid and need to be heard. For this reason, I am asking that if anyone has their story to share with me, please write it up and email it to me at: anavoog@... I am going to make a webpage for this to balance out all the negativity I see in the media about our children and our lives. With this 90% abortion rate, something has got to give! Enough! So please, forward this message to people you know to get the word out that I am compiling these stories. and to any down syndrome lists/forums and support groups you may go to in your community. I am going to put my all into this! Thank you for your help ---Ana Voog Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 I guess I cannot really submit a story as we have had massive medical issues and huge school issues, but the question I would encourage you to ask the parents who, like me, haven't had it easy is: " Given the knowledge of how hard it was going to be, would you choose to do it again? " My answer (and my husband's) would be a gigantic, resounding, " YES! " " Pick me! Pick me! " I, honest to God, would not trade one minute of life with my girl for a different life. No one gets through life without heartaches and difficult times, and sometimes it does feel we who parent these sweet, wonderful, stubborn, special, amzing, kids get a bigger dose, but I would submit we also get a bigger (much) dose of love and joy and thrills and happiness too. I absobloominglutely feel I am the lucky one, because I get to have her. Folks who don't have have no clue what they're missing. We all know that. And since I also parent a 'typical' kid I can truthfully say there are many times my girl w/ds is easier. No baby comes with a guarantee. Parents who think they can't handle special needs are probably wrong. Most folks rise to a challenge and one never knows what any child's needs will be. You get what you get. That's the message the pediatricians, obstetricians, and news media ought to be reporting. Eleanor _____ From: [mailto: ] On Behalf Of ana voog Sent: Sunday, September 14, 2008 4:58 PM Subject: I Need Your Story! Everywhere I look, especially now since down syndrome is getting more media attention because of Palin, I see stories about families with children with DS that are sometimes positive but almost always tempered with how heartbreaking, heartwrenching, lonely, sad and difficult having a child with down syndrome is. How the costs are huge with all the medical bills and therapies are. What what a horrible struggle it is for inclusion, etc. When I read these things over and over again I think no wonder so many women are aborting. The fear mongering is incredible and I believe there is a media bias to want to tell the worst stories (or at least sad in some way) they can find. It makes for more dramatic reading. I know that there are other families out there, like mine, who are NOT having a hard time of it. Who are having a relatively easy time with no struggle. I know I am not alone when I say it is a joy to raise my child with down syndrome and we do not feel lonely and our hearts are not breaking. We are not struggling with the system either. We are not always fighting for inclusion and our lives are not revolving around therapies. Maybe we are in the minority but I think our stories are just as valid and need to be heard. For this reason, I am asking that if anyone has their story to share with me, please write it up and email it to me at: anavooggmail (DOT) <mailto:anavoog%40gmail.com> com I am going to make a webpage for this to balance out all the negativity I see in the media about our children and our lives. With this 90% abortion rate, something has got to give! Enough! So please, forward this message to people you know to get the word out that I am compiling these stories. and to any down syndrome lists/forums and support groups you may go to in your community. I am going to put my all into this! Thank you for your help ---Ana Voog Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 A big resounding DITTO!!! Tammy mom to Hannah 8 ds, and Trystan 6 I Need Your Story! Everywhere I look, especially now since down syndrome is getting more media attention because of Palin, I see stories about families with children with DS that are sometimes positive but almost always tempered with how heartbreaking, heartwrenching, lonely, sad and difficult having a child with down syndrome is. How the costs are huge with all the medical bills and therapies are. What what a horrible struggle it is for inclusion, etc. When I read these things over and over again I think no wonder so many women are aborting. The fear mongering is incredible and I believe there is a media bias to want to tell the worst stories (or at least sad in some way) they can find. It makes for more dramatic reading. I know that there are other families out there, like mine, who are NOT having a hard time of it. Who are having a relatively easy time with no struggle. I know I am not alone when I say it is a joy to raise my child with down syndrome and we do not feel lonely and our hearts are not breaking. We are not struggling with the system either. We are not always fighting for inclusion and our lives are not revolving around therapies. Maybe we are in the minority but I think our stories are just as valid and need to be heard. For this reason, I am asking that if anyone has their story to share with me, please write it up and email it to me at: anavooggmail (DOT) <mailto:anavoog%40gmail.com> com I am going to make a webpage for this to balance out all the negativity I see in the media about our children and our lives. With this 90% abortion rate, something has got to give! Enough! So please, forward this message to people you know to get the word out that I am compiling these stories. and to any down syndrome lists/forums and support groups you may go to in your community. I am going to put my all into this! Thank you for your help ---Ana Voog Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 Ana, I know you mean well - and having a web site that promotes all the joys of having a child with DS is something you may enjoy doing. I really valued reading all the positives when was a newborn. When was little, we didn't struggle, either. Then he started to grow......he developed seizures and behaviors (mild autism??) and started public school. URGH! I do not sugar coat Down syndrome, not even for new parents. While I may not go into our own story when I am approached by a new parent, I may touch on some of the issues families face. There are many, many families that have had major financial difficulties - medical bills out the wazzoo and even some families must pay for Early Intervention Services. We are so fortunate to have good medical insurance for . His prescriptions would costs hundreds (500+) a month, I have no idea how much went to ER visits and his one hospitalization - also lab work (due to seizure meds, several times a year), trips to Kennedy Krieger in Baltimore (copay and gas), upcoming MRI under sedation, visits to the sinus doctor, dentist, ENT and ??? And the year is not yet over. We are so very lucky to have insurance pay for almost everything....so, so lucky. I can't forget the service coordinator, behaviorist (two--one comes from 4 hours away) and respite care. Not everyone is that fortunate. My biggest stressor right now is finding someone to watch him after school.....and then the problems at his school because, once again, I have to educate the educators (and it gets so old!). Oh yea, I really need to find a hiding place for coke. I hid the newest 12-pack under my bed and lo and behold, he found it!!!!! He gets a coke every day when he gets off the bus IF he is good on the bus. I have a five bedroom home...with lots of closets and hiding places- he'll find coke no matter where it gets hidden. And they say he has MR. I'm going to try an empty dresser drawer tomorrow...see how long before he finds it this time! Or maybe behind the shower curtain downstairs.............or behind his father's tool box................................. -- cindysue@... I Need Your Story! > Everywhere I look, especially now since down syndrome is > getting more media attention because of Palin, I see > stories about families with children with DS that are > sometimes positive but almost always tempered with how > heartbreaking, heartwrenching, lonely, sad and difficult > having a child with down syndrome is. How the costs are > huge with all the medical bills and therapies are. What > what a horrible struggle it is for inclusion, etc. > When I read these things over and over again I think no > wonder so many women are aborting. The fear mongering is > incredible and I believe there is a media bias to want to > tell the worst stories (or at least sad in some way) they > can find. It makes for more dramatic reading. > > I know that there are other families out there, like mine, > who are NOT having a hard time of it. Who are having a > relatively easy time with no struggle. I know I am not > alone when I say it is a joy to raise my child with down > syndrome and we do not feel lonely and our hearts are not > breaking. We are not struggling with the system either. We > are not always fighting for inclusion and our lives are not > revolving around therapies. > > Maybe we are in the minority but I think our stories are > just as valid and need to be heard. > For this reason, I am asking that if anyone has their story > to share with me, please write it up and email it to me at: > anavoog@... > I am going to make a webpage for this to balance out all > the negativity I see in the media about our children and > our lives. > With this 90% abortion rate, something has got to give! > Enough! > So please, forward this message to people you know to get the word out > that > I am compiling these stories. > > and to any down syndrome lists/forums and support groups you may go to in > your community. > > I am going to put my all into this! > Thank you for your help > > ---Ana Voog > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 Locking the coke in the car trunk was good when Jess was younger. . . Well, mostly good for her self-initiating learning to use the key to unlock the trunk. . . Never mind. Judi _____ From: [mailto: ] On Behalf Of CSBC Sent: Monday, September 15, 2008 9:16 PM ; ana voog Subject: Re: I Need Your Story! Ana, I know you mean well - and having a web site that promotes all the joys of having a child with DS is something you may enjoy doing. I really valued reading all the positives when was a newborn. When was little, we didn't struggle, either. Then he started to grow......he developed seizures and behaviors (mild autism??) and started public school. URGH! I do not sugar coat Down syndrome, not even for new parents. While I may not go into our own story when I am approached by a new parent, I may touch on some of the issues families face. There are many, many families that have had major financial difficulties - medical bills out the wazzoo and even some families must pay for Early Intervention Services. We are so fortunate to have good medical insurance for . His prescriptions would costs hundreds (500+) a month, I have no idea how much went to ER visits and his one hospitalization - also lab work (due to seizure meds, several times a year), trips to Kennedy Krieger in Baltimore (copay and gas), upcoming MRI under sedation, visits to the sinus doctor, dentist, ENT and ??? And the year is not yet over. We are so very lucky to have insurance pay for almost everything....so, so lucky. I can't forget the service coordinator, behaviorist (two--one comes from 4 hours away) and respite care. Not everyone is that fortunate. My biggest stressor right now is finding someone to watch him after school.....and then the problems at his school because, once again, I have to educate the educators (and it gets so old!). Oh yea, I really need to find a hiding place for coke. I hid the newest 12-pack under my bed and lo and behold, he found it!!!!! He gets a coke every day when he gets off the bus IF he is good on the bus. I have a five bedroom home...with lots of closets and hiding places- he'll find coke no matter where it gets hidden. And they say he has MR. I'm going to try an empty dresser drawer tomorrow...see how long before he finds it this time! Or maybe behind the shower curtain downstairs.............or behind his father's tool box................................. -- cindysuecomcast (DOT) <mailto:cindysue%40comcast.net> net I Need Your Story! > Everywhere I look, especially now since down syndrome is > getting more media attention because of Palin, I see > stories about families with children with DS that are > sometimes positive but almost always tempered with how > heartbreaking, heartwrenching, lonely, sad and difficult > having a child with down syndrome is. How the costs are > huge with all the medical bills and therapies are. What > what a horrible struggle it is for inclusion, etc. > When I read these things over and over again I think no > wonder so many women are aborting. The fear mongering is > incredible and I believe there is a media bias to want to > tell the worst stories (or at least sad in some way) they > can find. It makes for more dramatic reading. > > I know that there are other families out there, like mine, > who are NOT having a hard time of it. Who are having a > relatively easy time with no struggle. I know I am not > alone when I say it is a joy to raise my child with down > syndrome and we do not feel lonely and our hearts are not > breaking. We are not struggling with the system either. We > are not always fighting for inclusion and our lives are not > revolving around therapies. > > Maybe we are in the minority but I think our stories are > just as valid and need to be heard. > For this reason, I am asking that if anyone has their story > to share with me, please write it up and email it to me at: > anavooggmail (DOT) <mailto:anavoog%40gmail.com> com > I am going to make a webpage for this to balance out all > the negativity I see in the media about our children and > our lives. > With this 90% abortion rate, something has got to give! > Enough! > So please, forward this message to people you know to get the word out > that > I am compiling these stories. > > and to any down syndrome lists/forums and support groups you may go to in > your community. > > I am going to put my all into this! > Thank you for your help > > ---Ana Voog > > > 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 sugar coating anything. i'm balancing out the negative stories i read in the media. families with typical children have to deal with seizures and autism, too. it's not just a DS thing. On Mon, Sep 15, 2008 at 8:16 PM, CSBC <cindysue@...> wrote: > Ana, > > I know you mean well - and having a web site that promotes all the joys of > having a child with DS is something you may enjoy doing. I really valued > reading all the positives when was a newborn. When was > little, we didn't struggle, either. Then he started to grow......he > developed seizures and behaviors (mild autism??) and started public school. > URGH! > > I do not sugar coat Down syndrome, not even for new parents. While I may > not go into our own story when I am approached by a new parent, I may touch > on some of the issues families face. > > There are many, many families that have had major financial difficulties - > medical bills out the wazzoo and even some families must pay for Early > Intervention Services. We are so fortunate to have good medical insurance > for . His prescriptions would costs hundreds (500+) a month, I have > no idea how much went to ER visits and his one hospitalization - also lab > work (due to seizure meds, several times a year), trips to Kennedy Krieger > in Baltimore (copay and gas), upcoming MRI under sedation, visits to the > sinus doctor, dentist, ENT and ??? And the year is not yet over. We are so > very lucky to have insurance pay for almost everything....so, so lucky. I > can't forget the service coordinator, behaviorist (two--one comes from 4 > hours away) and respite care. Not everyone is that fortunate. > > My biggest stressor right now is finding someone to watch him after > school.....and then the problems at his school because, once again, I have > to educate the educators (and it gets so old!). > > Oh yea, I really need to find a hiding place for coke. I hid the newest > 12-pack under my bed and lo and behold, he found it!!!!! He gets a coke > every day when he gets off the bus IF he is good on the bus. I have a five > bedroom home...with lots of closets and hiding places- he'll find coke no > matter where it gets hidden. And they say he has MR. I'm going to try > an empty dresser drawer tomorrow...see how long before he finds it this > time! Or maybe behind the shower curtain downstairs.............or behind > his father's tool box................................. > > > > -- > > cindysue@... > I Need Your Story! > > > Everywhere I look, especially now since down syndrome is >> getting more media attention because of Palin, I see >> stories about families with children with DS that are >> sometimes positive but almost always tempered with how >> heartbreaking, heartwrenching, lonely, sad and difficult >> having a child with down syndrome is. How the costs are >> huge with all the medical bills and therapies are. What >> what a horrible struggle it is for inclusion, etc. >> When I read these things over and over again I think no >> wonder so many women are aborting. The fear mongering is >> incredible and I believe there is a media bias to want to >> tell the worst stories (or at least sad in some way) they >> can find. It makes for more dramatic reading. >> >> I know that there are other families out there, like mine, >> who are NOT having a hard time of it. Who are having a >> relatively easy time with no struggle. I know I am not >> alone when I say it is a joy to raise my child with down >> syndrome and we do not feel lonely and our hearts are not >> breaking. We are not struggling with the system either. We >> are not always fighting for inclusion and our lives are not >> revolving around therapies. >> >> Maybe we are in the minority but I think our stories are >> just as valid and need to be heard. >> For this reason, I am asking that if anyone has their story >> to share with me, please write it up and email it to me at: >> anavoog@... >> I am going to make a webpage for this to balance out all >> the negativity I see in the media about our children and >> our lives. >> With this 90% abortion rate, something has got to give! >> Enough! >> So please, forward this message to people you know to get the word out >> that >> I am compiling these stories. >> >> and to any down syndrome lists/forums and support groups you may go to in >> your community. >> >> I am going to put my all into this! >> Thank you for your help >> >> ---Ana Voog >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Dagmar, We had years of sleepless nights with Maverick. Now we have an alarm on the outside of his door.. cheap enough at radio shack or home depot. That way we hear the door when he (or his brother) open the door. With Logan, who just moved in with us.. he's 6. He stays in his room since he can't turn the handle to open the door, but he's up all night! We have started giving him melatonin with his dinner and when bedtime comes, about 3 hours later, sometimes he's ready, sometimes he's not. But he seems to awaken less during the night. For a while there we were up all night with his behaviors. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 In a message dated 9/16/2008 11:13:01 AM Eastern Daylight Time, michdock@... writes: I don't really know how you can " balance " that out. It is what it is. We are blessed to have all 3 of these guys as a part of our family, but their lives have not always been blessed. There are situations in each of their lives that I would love not to have been or to be there, but they make them who they are and they most CERTAINLY make ME who I am. Well said! Loree **************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 16, 2008 Report Share Posted September 16, 2008 > i'm not sugar coating anything. > i'm balancing out the negative stories i read in the media. > > families with typical children have to deal with seizures and autism, too. > it's not just a DS thing. > > I know seizures and autism CAN be separate and is also found in typical children, but 's is related to his DS. The extra genes being expressed have really messed up his neurobiological function. Just as some kids who are 'typical " have heart conditions, other kids with DS (about 50%) have heart problems directly related to DS. The extra genetic material has affected their cardiac system. Those parents whose children are doing well, both medically and emotionally (and I think one would have to wait till teen years as some things like seizures pop up later) are very fortunate. There are many positive stories in the media, too. There are many self-advocates who are really doing a great job promoting DS awareness. Then there are those who quietly live in their communities who are doing the same thing..without realizing it. Anyway, go for it......but I do want to caution you that there are some people who will take the pictures of our children and use them in negative ways on the internet. Make sure the pictures cannot be copied. How old is your child? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Tried that....didn't work -- cindysue@... I Need Your Story! > >> Everywhere I look, especially now since down syndrome is >> getting more media attention because of Palin, I see >> stories about families with children with DS that are >> sometimes positive but almost always tempered with how >> heartbreaking, heartwrenching, lonely, sad and difficult >> having a child with down syndrome is. How the costs are >> huge with all the medical bills and therapies are. What >> what a horrible struggle it is for inclusion, etc. >> When I read these things over and over again I think no >> wonder so many women are aborting. The fear mongering is >> incredible and I believe there is a media bias to want to >> tell the worst stories (or at least sad in some way) they >> can find. It makes for more dramatic reading. >> >> I know that there are other families out there, like mine, >> who are NOT having a hard time of it. Who are having a >> relatively easy time with no struggle. I know I am not >> alone when I say it is a joy to raise my child with down >> syndrome and we do not feel lonely and our hearts are not >> breaking. We are not struggling with the system either. We >> are not always fighting for inclusion and our lives are not >> revolving around therapies. >> >> Maybe we are in the minority but I think our stories are >> just as valid and need to be heard. >> For this reason, I am asking that if anyone has their story >> to share with me, please write it up and email it to me at: >> anavooggmail (DOT) <mailto:anavoog%40gmail.com> com >> I am going to make a webpage for this to balance out all >> the negativity I see in the media about our children and >> our lives. >> With this 90% abortion rate, something has got to give! >> Enough! >> So please, forward this message to people you know to get the word out >> that >> I am compiling these stories. >> >> and to any down syndrome lists/forums and support groups you may go to in >> your community. >> >> I am going to put my all into this! >> Thank you for your help >> >> ---Ana Voog >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 again, i am NOT sugar coating down syndrome. did you even read what i wrote in my letter for stories? it will explain what i am trying to do. please read it again so you understand. On Tue, Sep 16, 2008 at 12:36 AM, Dagmar Haes <dagmar@...>wrote: > Hi you all, > I agree with . Sugar coating Down syndrome doesn't help. But telling > people, things are not only hard but also loveable, cute and heartwarming > can be a way. At the moment cannot sleep at night. > Why? No one knows. We have to lock all the doors to the outside (there are > four) and I'm not sleeping. Every noise makes me stand right in my bed. And > believe me, sometimes I'm so angry. But in the morning when wakes up, > he looks at me, pulls his arms around me and tell me, that he loves > me....... my heart is melting and I forget the night without sleep. > > Dagmar > > -----Ursprüngliche Nachricht----- > *Von:* [mailto: ]*Im > Auftrag von *CSBC > *Gesendet:* Dienstag, 16. September 2008 03:16 > *An:* ; ana voog > *Betreff:* Re: I Need Your Story! > > Ana, > > I know you mean well - and having a web site that promotes all the joys of > having a child with DS is something you may enjoy doing. I really valued > reading all the positives when was a newborn. When was > little, we didn't struggle, either. Then he started to grow......he > developed seizures and behaviors (mild autism??) and started public school. > > URGH! > > I do not sugar coat Down syndrome, not even for new parents. While I may > not > go into our own story when I am approached by a new parent, I may touch on > some of the issues families face. > > There are many, many families that have had major financial difficulties - > medical bills out the wazzoo and even some families must pay for Early > Intervention Services. We are so fortunate to have good medical insurance > for . His prescriptions would costs hundreds (500+) a month, I have > no idea how much went to ER visits and his one hospitalization - also lab > work (due to seizure meds, several times a year), trips to Kennedy Krieger > in Baltimore (copay and gas), upcoming MRI under sedation, visits to the > sinus doctor, dentist, ENT and ??? And the year is not yet over. We are so > very lucky to have insurance pay for almost everything....so, so lucky. I > can't forget the service coordinator, behaviorist (two--one comes from 4 > hours away) and respite care. Not everyone is that fortunate. > > My biggest stressor right now is finding someone to watch him after > school.....and then the problems at his school because, once again, I have > to educate the educators (and it gets so old!). > > Oh yea, I really need to find a hiding place for coke. I hid the newest > 12-pack under my bed and lo and behold, he found it!!!!! He gets a coke > every day when he gets off the bus IF he is good on the bus. I have a five > bedroom home...with lots of closets and hiding places- he'll find coke no > matter where it gets hidden. And they say he has MR. I'm going to try > an empty dresser drawer tomorrow...see how long before he finds it this > time! Or maybe behind the shower curtain downstairs.............or behind > his father's tool box................................. > > > > -- > > cindysue@... <cindysue%40comcast.net> > I Need Your Story! > > > Everywhere I look, especially now since down syndrome is > > getting more media attention because of Palin, I see > > stories about families with children with DS that are > > sometimes positive but almost always tempered with how > > heartbreaking, heartwrenching, lonely, sad and difficult > > having a child with down syndrome is. How the costs are > > huge with all the medical bills and therapies are. What > > what a horrible struggle it is for inclusion, etc. > > When I read these things over and over again I think no > > wonder so many women are aborting. The fear mongering is > > incredible and I believe there is a media bias to want to > > tell the worst stories (or at least sad in some way) they > > can find. It makes for more dramatic reading. > > > > I know that there are other families out there, like mine, > > who are NOT having a hard time of it. Who are having a > > relatively easy time with no struggle. I know I am not > > alone when I say it is a joy to raise my child with down > > syndrome and we do not feel lonely and our hearts are not > > breaking. We are not struggling with the system either. We > > are not always fighting for inclusion and our lives are not > > revolving around therapies. > > > > Maybe we are in the minority but I think our stories are > > just as valid and need to be heard. > > For this reason, I am asking that if anyone has their story > > to share with me, please write it up and email it to me at: > > anavoog@... <anavoog%40gmail.com> > > I am going to make a webpage for this to balance out all > > the negativity I see in the media about our children and > > our lives. > > With this 90% abortion rate, something has got to give! > > Enough! > > So please, forward this message to people you know to get the word out > > that > > I am compiling these stories. > > > > and to any down syndrome lists/forums and support groups you may go to in > > your community. > > > > I am going to put my all into this! > > Thank you for your help > > > > ---Ana Voog > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 i think what i am going to do is a very good thing. MOST stories about DS that *I* have seen in the media have not been good at all. i am trying to balance that out. where did i say i was going to post photos of children on the internet? On Tue, Sep 16, 2008 at 6:30 AM, CSBC <cindysue@...> wrote: > > > > > i'm not sugar coating anything. >> i'm balancing out the negative stories i read in the media. >> >> families with typical children have to deal with seizures and autism, too. >> it's not just a DS thing. >> >> >> I know seizures and autism CAN be separate and is also found in typical > children, but 's is related to his DS. The extra genes being > expressed have really messed up his neurobiological function. Just as some > kids who are 'typical " have heart conditions, other kids with DS (about 50%) > have heart problems directly related to DS. The extra genetic material has > affected their cardiac system. Those parents whose children are doing well, > both medically and emotionally (and I think one would have to wait till teen > years as some things like seizures pop up later) are very fortunate. > > There are many positive stories in the media, too. There are many > self-advocates who are really doing a great job promoting DS awareness. Then > there are those who quietly live in their communities who are doing the same > thing..without realizing it. Anyway, go for it......but I do want to > caution you that there are some people who will take the pictures of our > children and use them in negative ways on the internet. Make sure the > pictures cannot be copied. > > How old is your child? > > > -- <-THIS IZ A TRANCE MISSION FRUM THEE VOOG MUTHERSHIP-> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Most stories I have seen in the media have been pretty positive. The REALITY is that no matter how much joy your child with ds might ultimately bring you, it's not all roses. I have 3. Maverick, 17, was not aborted and we adopted him at birth. His has been the best story of the three, but there were heartaches.. heart surgery, other health issues, and of course, inclusion issues within the family, church, and school. Still, I would consider it a positive story. , 46, was placed in an institution and raised there until he was 22 when they were " deinstitutionalizing " the US in the 70's and 80's. He now lives with us as a very important part of our family. He has no speech, limited abilities, a pace maker, and he most wonderful smile you could ever ask for. No family involvement, we are his family. I think THAT is a success story. Logan, 6, born to a mother who didn't want him but kept him. CPS took away 7 others, but always gave Logan back. He was pretty much neglected for 6 years. We got him 4 months ago, not walking, not speaking, and behaviors that were off the charts. He's walking now, and signing and has more speech. I'm homeschooling him due to inclusion issues. We are still sorting out his health issues. But the adoption will be finalized soon... THAT is a good story. None of these stories is all sweet and nice. They ALL have issues, and they always will because there ARE health issues that go with DS. And there will always be inclusion issues because no matter how much the world has changed, it still has a way to go. And there will be families who will not abort because they don't believe it's right, and then they will not accept, and/or neglect and abuse their children. I don't really know how you can " balance " that out. It is what it is. We are blessed to have all 3 of these guys as a part of our family, but their lives have not always been blessed. There are situations in each of their lives that I would love not to have been or to be there, but they make them who they are and they most CERTAINLY make ME who I am. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 that's great you have seen some positive stories. that is wonderful. i have , too, but not very many. the REALITY is that it's not all roses to raise children, period. raising children can be hard for all. typical or nontypical. my point is, not ALL of us are struggling and having heartache. seriously, this is true. the more this list tells me that i am not being realistic and sugarcoating just further cements the fact that the stories of those of us who are not struggling and having heartache are getting out. so many of you think that every single one of us are having a hard time of some sort. and that if we are not having a hard time YET, we most certainly will in the future. this is just not the case for all of us. our stories are just as valid as yours and ALL stories deserve to be heard. the ones where things are not a struggle just as much as the ones where things are a struggle. that is ALL i am saying. for you to tell me that MY personal experience is not reality is just wrong. because i can attest to you it IS reality for i am living it and experiencing it. and i am NOT the only one. there are many many many of us out there who are not struggling. our voices deserve to be heard, too. i don't know why this is so hard for some of you to understand. i'm not trying to argue here, but really this is starting to aggravate me now. my experience is real and valid. and i am going to get the word out there. On Tue, Sep 16, 2008 at 10:11 AM, and FRANK <michdock@...>wrote: > Most stories I have seen in the media have been pretty positive. > The REALITY is that no matter how much joy your child with ds might > ultimately bring you, it's not all roses. > I have 3. Maverick, 17, was not aborted and we adopted him at birth. His > has been the best story of the three, but there were heartaches.. heart > surgery, other health issues, and of course, inclusion issues within the > family, church, and school. Still, I would consider it a positive story. > , 46, was placed in an institution and raised there until he was 22 > when they were " deinstitutionalizing " the US in the 70's and 80's. He now > lives with us as a very important part of our family. He has no speech, > limited abilities, a pace maker, and he most wonderful smile you could ever > ask for. No family involvement, we are his family. I think THAT is a > success story. > Logan, 6, born to a mother who didn't want him but kept him. CPS took > away 7 others, but always gave Logan back. He was pretty much neglected for > 6 years. We got him 4 months ago, not walking, not speaking, and behaviors > that were off the charts. He's walking now, and signing and has more > speech. I'm homeschooling him due to inclusion issues. We are still sorting > out his health issues. But the adoption will be finalized soon... THAT is a > good story. > None of these stories is all sweet and nice. They ALL have issues, and > they always will because there ARE health issues that go with DS. And > there will always be inclusion issues because no matter how much the world > has changed, it still has a way to go. And there will be families who will > not abort because they don't believe it's right, and then they will not > accept, and/or neglect and abuse their children. > I don't really know how you can " balance " that out. It is what it is. We > are blessed to have all 3 of these guys as a part of our family, but their > lives have not always been blessed. There are situations in each of their > lives that I would love not to have been or to be there, but they make them > who they are and they most CERTAINLY make ME who I am. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 " I don't really know how you can " balance " that out. " by getting the word out there. by making the website i am going to make by telling ALL of our stories. it's simple. On Tue, Sep 16, 2008 at 10:19 AM, <Loree5@...> wrote: > > In a message dated 9/16/2008 11:13:01 AM Eastern Daylight Time, > michdock@... writes: > > I don't really know how you can " balance " that out. It is what it is. We > are > blessed to have all 3 of these guys as a part of our family, but their > lives > have not always been blessed. There are situations in each of their lives > that I would love not to have been or to be there, but they make them who > they > are and they most CERTAINLY make ME who I am. > > > > > Well said! > > Loree > > > > **************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 16, 2008 Report Share Posted September 16, 2008 Ana, I certainly am thrilled for you to tell all the good stuff. It's a wonderful idea and a big task, I would imagine. I wish you good fortune pulling it together. I think what most folks are trying to convey (myself included) is we honestly believe our stories are positive, but there are certainly rough parts to the rearing of our sweetpeas. Truthfully, it isn't the child as much as the outside environment, be it health or school or whatever. When my daughter was younger, once we got past the life threatening stuff, I just spent years glorying in her beautiful self. I still do glory in the beauty of her, but admittedly have had challenges in dealing with school issues. I hope if your child is young, those of us who have gone before you have paved a path that will make it easier for you to enjoy your child. 7 or 8 years ago I stood at a national conference on ds and watched 25 year olds with ds give speeches and talk about inclusion and do such a great job. I had tears in my eyes at how far the world at come. I knew with utter certainty we newer parents stood on the backs of giants. No question. I reached over to the silver haired woman to my right to say thank you to her. Turns out she was the mother of the actor from, " Life Goes On, " who played Corky. We all humbly stand on the backs of giants. If you don't mind, would you please tell me the age of your child with ds? Thanks, Eleanor _____ From: [mailto: ] On Behalf Of ana voog Sent: Tuesday, September 16, 2008 9:27 AM Subject: Re: I Need Your Story! i think what i am going to do is a very good thing. MOST stories about DS that *I* have seen in the media have not been good at all. i am trying to balance that out. where did i say i was going to post photos of children on the internet? On Tue, Sep 16, 2008 at 6:30 AM, CSBC <cindysuecomcast (DOT) <mailto:cindysue%40comcast.net> net> wrote: > > > > > i'm not sugar coating anything. >> i'm balancing out the negative stories i read in the media. >> >> families with typical children have to deal with seizures and autism, too. >> it's not just a DS thing. >> >> >> I know seizures and autism CAN be separate and is also found in typical > children, but 's is related to his DS. The extra genes being > expressed have really messed up his neurobiological function. Just as some > kids who are 'typical " have heart conditions, other kids with DS (about 50%) > have heart problems directly related to DS. The extra genetic material has > affected their cardiac system. Those parents whose children are doing well, > both medically and emotionally (and I think one would have to wait till teen > years as some things like seizures pop up later) are very fortunate. > > There are many positive stories in the media, too. There are many > self-advocates who are really doing a great job promoting DS awareness. Then > there are those who quietly live in their communities who are doing the same > thing..without realizing it. Anyway, go for it......but I do want to > caution you that there are some people who will take the pictures of our > children and use them in negative ways on the internet. Make sure the > pictures cannot be copied. > > How old is your child? > > > -- <-THIS IZ A TRANCE MISSION FRUM THEE VOOG MUTHERSHIP-> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Ana, Forgive me, as I'm sure you've posted this before, but how old is your child? The reason I ask, is because had someone asked me during Nick's first five years of life if having a child with DS was difficult, I would have answered, " No more than having any baby and being single is difficult. " ? Looking back and comparing his birth and first five years of life with his younger brothers births and first five years of life -- I'd still say that and probably add he was easier even with therapies and doctor appointments. However, if I would compare years 5-8 (as my middle son is only 8), I would definitely say the younger two boys were/are easier to some extent.? What has changed?? Well, Nick has developed sleep issues (around the time he turned 6) and behavioral issues.? Around that time too, I was starting to see more and more autistic tendencies (though Nick has never been diagnosed as autistic, it is my firm belief that had he not had DS someone would have suggested Asperger's by now).? Nick is now 15 years old but has abilities ranging from 3 to almost 15 years in age and these abilities aren't stationary but can show up at any time.? (Example I like to use to illustrate this point, 3 yo Nick does something and 15 yo Nick pops in just as it is discovered and can't figure out why he's in trouble because he knows he shouldn't do whatever 3 yo Nick did but since 3 yo Nick did it 15 yo Nick can't explain.)? I laugh when people who ask how many children do you have?? Simple answer: 3 (4 counting my stepdaughter).? Complex (reality mode) answer:? Anywhere from 3 to 11, oh one of those 11 is exactly just one physical child. I have basically since around the time my middle son was born been sleep deprived.? I joke that I sleep with one ear and one eye open at all times.? I have attempted to stay awake until Nick typically gets up, but he always manages to outlast me on that one and waits until about 30 minutes after I finally crash.? One night I actually stayed up all night -- he slept all night that night!? He has wandered off several times and it has taken approximately 1 to 1-1/2 hours to locate him (this last time I just called the sheriff, who called the VFD, immediately).? Even with all this said, I love my son very much and wouldn't trade him for anything.? I also would tell people that for the most part having a child with DS (especially a healthy one) is basically no different than having and raising a typical child.? Are there things I'd like to change?? You bet.? Number one being Nick would start sleeping again.? Second he wouldn't compulse on pop, chocolate and electronics.? Third -- his intelligibility would be greatly improved.? He's a smart boy but he's also a master manipulator and has learned that most people don't expect him to be able to do certain things and he is perfectly content to allow them to continue with their misconception as then they will do it for him. Cari Re: I Need Your Story! that's great you have seen some positive stories. that is wonderful. i have , too, but not very many. the REALITY is that it's not all roses to raise children, period. raising children can be hard for all. typical or nontypical. my point is, not ALL of us are struggling and having heartache. seriously, this is true. the more this list tells me that i am not being realistic and sugarcoating just further cements the fact that the stories of those of us who are not struggling and having heartache are getting out. so many of you think that every single one of us are having a hard time of some sort. and that if we are not having a hard time YET, we most certainly will in the future. this is just not the case for all of us. our stories are just as valid as yours and ALL stories deserve to be heard. the ones where things are not a struggle just as much as the ones where things are a struggle. that is ALL i am saying. for you to tell me that MY personal experience is not reality is just wrong. because i can attest to you it IS reality for i am living it and experiencing it. and i am NOT the only one. there are many many many of us out there who are not struggling. our voices deserve to be heard, too. i don't know why this is so hard for some of you to understand. i'm not trying to argue here, but really this is starting to aggravate me now. my experience is real and valid. and i am going to get the word out there. On Tue, Sep 16, 2008 at 10:11 AM, and FRANK <michdock@...>wrote: > Most stories I have seen in the media have been pretty positive. > The REALITY is that no matter how much joy your child with ds might > ultimately bring you, it's not all roses. > I have 3. Maverick, 17, was not aborted and we adopted him at birth. His > has been the best story of the three, but there were heartaches.. heart > surgery, other health issues, and of course, inclusion issues within the > family, church, and school. Still, I would consider it a positive story. > , 46, was placed in an institution and raised there until he was 22 > when they were " deinstitutionalizing " the US in the 70's and 80's. He now > lives with us as a very important part of our family. He has no speech, > limited abilities, a pace maker, and he most wonderful smile you could ever > ask for. No family involvement, we are his family. I think THAT is a > success story. > Logan, 6, born to a mother who didn't want him but kept him. CPS took > away 7 others, but always gave Logan back. He was pretty much neglected for > 6 years. We got him 4 months ago, not walking, not speaking, and behaviors > that were off the charts. He's walking now, and signing and has more > speech. I'm homeschooling him due to inclusion issues. We are still sorting > out his health issues. But the adoption will be finalized soon... THAT is a > good story. > None of these stories is all sweet and nice. They ALL have issues, and > they always will because there ARE health issues that go with DS. And > there will always be inclusion issues because no matter how much the world > has changed, it still has a way to go. And there will be families who will > not abort because they don't believe it's right, and then they will not > accept, and/or neglect and abuse their children. > I don't really know how you can " balance " that out. It is what it is. We > are blessed to have all 3 of these guys as a part of our family, but their > lives have not always been blessed. There are situations in each of their > lives that I would love not to have been or to be there, but they make them > who they are and they most CERTAINLY make ME who I am. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 i certainly do not mean to imply that anyone who has had difficulties has nothing positive to add or say. far from it! all i am saying is the MEDIA , from what i have seen, likes to talk a LOT about heartache, struggle and difficulty and that is not a balanced assessment. it is not the full spectrum of the DS experience. thank you for your good words of support. my daughter is 1 year old. but she is not my only experience with DS. my uncle also had DS and he lived a long full and healthy life. it was not a life with medical issues, struggles, sorrow, fighting for inclusion or any of that. it was just a happy life and far before early intervention or any of that. and so i have his life and my grandmother's experience with raising him to also gain from. and i am infinitely grateful for my grandmother and uncle for this it helps me to go forward with no fear On Tue, Sep 16, 2008 at 12:15 PM, Eleanor Green <eig6@...> wrote: > Ana, > > I certainly am thrilled for you to tell all the good stuff. It's a > wonderful idea and a big task, I would imagine. I wish you good fortune > pulling it together. I think what most folks are trying to convey (myself > included) is we honestly believe our stories are positive, but there are > certainly rough parts to the rearing of our sweetpeas. Truthfully, it isn't > the child as much as the outside environment, be it health or school or > whatever. When my daughter was younger, once we got past the life > threatening stuff, I just spent years glorying in her beautiful self. I > still do glory in the beauty of her, but admittedly have had challenges in > dealing with school issues. I hope if your child is young, those of us who > have gone before you have paved a path that will make it easier for you to > enjoy your child. 7 or 8 years ago I stood at a national conference on ds > and watched 25 year olds with ds give speeches and talk about inclusion and > do such a great job. I had tears in my eyes at how far the world at come. I > knew with utter certainty we newer parents stood on the backs of giants. No > question. I reached over to the silver haired woman to my right to say thank > you to her. Turns out she was the mother of the actor from, " Life Goes On, " > who played Corky. We all humbly stand on the backs of giants. > > If you don't mind, would you please tell me the age of your child with ds? > > Thanks, > > Eleanor > > ------------------------------ > *From:* [mailto: ] *On > Behalf Of *ana voog > *Sent:* Tuesday, September 16, 2008 9:27 AM > *To:* > *Subject:* Re: I Need Your Story! > > i think what i am going to do is a very good thing. > MOST stories about DS that *I* have seen in the media have not been good at > all. > i am trying to balance that out. > > where did i say i was going to post photos of children on the internet? > > On Tue, Sep 16, 2008 at 6:30 AM, CSBC <cindysue@...<cindysue%40comcast.net>> > wrote: > > > > > > > > > > > i'm not sugar coating anything. > >> i'm balancing out the negative stories i read in the media. > >> > >> families with typical children have to deal with seizures and autism, > too. > >> it's not just a DS thing. > >> > >> > >> I know seizures and autism CAN be separate and is also found in typical > > children, but 's is related to his DS. The extra genes being > > expressed have really messed up his neurobiological function. Just as > some > > kids who are 'typical " have heart conditions, other kids with DS (about > 50%) > > have heart problems directly related to DS. The extra genetic material > has > > affected their cardiac system. Those parents whose children are doing > well, > > both medically and emotionally (and I think one would have to wait till > teen > > years as some things like seizures pop up later) are very fortunate. > > > > There are many positive stories in the media, too. There are many > > self-advocates who are really doing a great job promoting DS awareness. > Then > > there are those who quietly live in their communities who are doing the > same > > thing..without realizing it. Anyway, go for it......but I do want to > > caution you that there are some people who will take the pictures of our > > children and use them in negative ways on the internet. Make sure the > > pictures cannot be copied. > > > > How old is your child? > > > > > > > > -- > > <-THIS IZ A TRANCE MISSION FRUM THEE VOOG MUTHERSHIP-> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 as i told eleanor: " my daughter is 1 year old. but she is not my only experience with DS. my uncle also had DS and he lived a long full and healthy life. it was not a life with medical issues, struggles, sorrow, fighting for inclusion or any of that. it was just a happy life and far before early intervention or any of that. and so i have his life and my grandmother's experience with raising him to also gain from. and i am infinitely grateful for my grandmother and uncle for this it helps me to go forward with no fear " i really do not see the point at all of saying to a new mother with a child with DS who is having a nice time with her baby to basically " wait and see, YOU have it easy now, but in the future you will struggle just like the rest of us! your baby may be healthy now but in the future she will probably have terrible health issues! " really, what is the good of saying that to me? how can you possibly know my future or my child's future? how can you possibly know ANY child's future. did you know that 90% of disabilities happen later in life to people? seriously, ALL of us, every single one of us are in danger of health problems, disease, struggle and heartache of every imaginable and unimaginable kind. but WHY is it that we feel this COMPULSION to say to a new mother of a HEALTHY child that she should NOT be so happy as she is and that she SHOULD be fearful for the future wellbeing of her child? do we say this to new mothers of " normal " healthy children? " just you wait and see! it's going to probably be awful! " no, i don't think we do! so why do we do this to new mothers of healthy children who happen to have DS? why do we feel this need to instill so much fear? On Tue, Sep 16, 2008 at 12:23 PM, <CMancari@...> wrote: > > Ana, > > Forgive me, as I'm sure you've posted this before, but how old is your > child? > > The reason I ask, is because had someone asked me during Nick's first five > years of life if having a child with DS was difficult, I would have > answered, " No more than having any baby and being single is difficult. " ? > Looking back and comparing his birth and first five years of life with his > younger brothers births and first five years of life -- I'd still say that > and probably add he was easier even with therapies and doctor appointments. > > However, if I would compare years 5-8 (as my middle son is only 8), I would > definitely say the younger two boys were/are easier to some extent.? What > has changed?? Well, Nick has developed sleep issues (around the time he > turned 6) and behavioral issues.? Around that time too, I was starting to > see more and more autistic tendencies (though Nick has never been diagnosed > as autistic, it is my firm belief that had he not had DS someone would have > suggested Asperger's by now).? Nick is now 15 years old but has abilities > ranging from 3 to almost 15 years in age and these abilities aren't > stationary but can show up at any time.? (Example I like to use to > illustrate this point, 3 yo Nick does something and 15 yo Nick pops in just > as it is discovered and can't figure out why he's in trouble because he > knows he shouldn't do whatever 3 yo Nick did but since 3 yo Nick did it 15 > yo Nick can't explain.)? > > I laugh when people who ask how many children do you have?? Simple answer: > 3 (4 counting my stepdaughter).? Complex (reality mode) answer:? Anywhere > from 3 to 11, oh one of those 11 is exactly just one physical child. > > I have basically since around the time my middle son was born been sleep > deprived.? I joke that I sleep with one ear and one eye open at all times.? > I have attempted to stay awake until Nick typically gets up, but he always > manages to outlast me on that one and waits until about 30 minutes after I > finally crash.? One night I actually stayed up all night -- he slept all > night that night!? > > He has wandered off several times and it has taken approximately 1 to 1-1/2 > hours to locate him (this last time I just called the sheriff, who called > the VFD, immediately).? > > Even with all this said, I love my son very much and wouldn't trade him for > anything.? I also would tell people that for the most part having a child > with DS (especially a healthy one) is basically no different than having and > raising a typical child.? Are there things I'd like to change?? You bet.? > Number one being Nick would start sleeping again.? Second he wouldn't > compulse on pop, chocolate and electronics.? Third -- his intelligibility > would be greatly improved.? He's a smart boy but he's also a master > manipulator and has learned that most people don't expect him to be able to > do certain things and he is perfectly content to allow them to continue with > their misconception as then they will do it for him. > > Cari > > > > > > > > > > > Re: I Need Your Story! > > > > > > > > > > > > > > > > > > > > > > > > > > that's great you have seen some positive stories. that is wonderful. > > i have , too, but not very many. > > > > the REALITY is that it's not all roses to raise children, period. > > raising children can be hard for all. typical or nontypical. > > > > my point is, not ALL of us are struggling and having heartache. > > seriously, this is true. > > > > the more this list tells me that i am not being realistic and sugarcoating > > just further cements the fact that the stories of those of us who are not > > struggling and having heartache are getting out. > > > > so many of you think that every single one of us are having a hard time of > > some sort. > > and that if we are not having a hard time YET, we most certainly will in > the > > future. > > > > this is just not the case for all of us. > > our stories are just as valid as yours and ALL stories deserve to be heard. > > > > the ones where things are not a struggle just as much as the ones where > > things are a struggle. > > > > that is ALL i am saying. > > > > for you to tell me that MY personal experience is not reality is just > wrong. > > because i can attest to you it IS reality for i am living it and > > experiencing it. > > and i am NOT the only one. there are many many many of us out there who are > > not struggling. > > our voices deserve to be heard, too. > > > > i don't know why this is so hard for some of you to understand. > > > > i'm not trying to argue here, but really this is starting to aggravate me > > now. > > > > my experience is real and valid. > > and i am going to get the word out there. > > > > On Tue, Sep 16, 2008 at 10:11 AM, and FRANK <michdock@... > >wrote: > > > > > Most stories I have seen in the media have been pretty positive. > > > The REALITY is that no matter how much joy your child with ds might > > > ultimately bring you, it's not all roses. > > > I have 3. Maverick, 17, was not aborted and we adopted him at birth. > His > > > has been the best story of the three, but there were heartaches.. heart > > > surgery, other health issues, and of course, inclusion issues within the > > > family, church, and school. Still, I would consider it a positive story. > > > , 46, was placed in an institution and raised there until he was 22 > > > when they were " deinstitutionalizing " the US in the 70's and 80's. He > now > > > lives with us as a very important part of our family. He has no speech, > > > limited abilities, a pace maker, and he most wonderful smile you could > ever > > > ask for. No family involvement, we are his family. I think THAT is a > > > success story. > > > Logan, 6, born to a mother who didn't want him but kept him. CPS took > > > away 7 others, but always gave Logan back. He was pretty much neglected > for > > > 6 years. We got him 4 months ago, not walking, not speaking, and > behaviors > > > that were off the charts. He's walking now, and signing and has more > > > speech. I'm homeschooling him due to inclusion issues. We are still > sorting > > > out his health issues. But the adoption will be finalized soon... THAT > is a > > > good story. > > > None of these stories is all sweet and nice. They ALL have issues, and > > > they always will because there ARE health issues that go with DS. And > > > there will always be inclusion issues because no matter how much the > world > > > has changed, it still has a way to go. And there will be families who > will > > > not abort because they don't believe it's right, and then they will not > > > accept, and/or neglect and abuse their children. > > > I don't really know how you can " balance " that out. It is what it is. > We > > > are blessed to have all 3 of these guys as a part of our family, but > their > > > lives have not always been blessed. There are situations in each of > their > > > lives that I would love not to have been or to be there, but they make > them > > > who they are and they most CERTAINLY make ME who I am. > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Ana, I'm not saying we should be saying " wait and see " but if I'm asked to be honest it hasn't always been easy and no, it's not always been easy with my two typically developing boys and it's especially not been easy with my stepdaughter. I will tell anyone who asks there are no guarantees in this world.? Children don't come stamped " guaranteed not to cause you heartache. " ? If anything, they probably should come with a black box warning .... " Sure to bring you plenty of tears and heartache, but don't worry they also bring you plenty of laughter, joy and love. " I think the biggest fear is going to the opposite end of the spectrum (i.e., totally sugar-coating it).? I also think that having stories that tell of the joy in the midst of the pain is good.? I know when I had Nick I tended to avoid the totally negative information and the totally positive information.? I'll admit I tended to view Nick as a typical baby with a little something extra. I agree the media and the medical establishment tend to paint more of a gloom and doom forecast than it will be alright.? Keep working at your project, but consider adding a section for the not so rosy pictures that have the uplifting " we'd do it all again " message. Cari Re: I Need Your Story! > > > > > > > > > > > > > > > > > > > > > > > > > > that's great you have seen some positive stories. that is wonderful. > > i have , too, but not very many. > > > > the REALITY is that it's not all roses to raise children, period. > > raising children can be hard for all. typical or nontypical. > > > > my point is, not ALL of us are struggling and having heartache. > > seriously, this is true. > > > > the more this list tells me that i am not being realistic and sugarcoating > > just further cements the fact that the stories of those of us who are not > > struggling and having heartache are getting out. > > > > so many of you think that every single one of us are having a hard time of > > some sort. > > and that if we are not having a hard time YET, we most certainly will in > the > > future. > > > > this is just not the case for all of us. > > our stories are just as valid as yours and ALL stories deserve to be heard. > > > > the ones where things are not a struggle just as much as the ones where > > things are a struggle. > > > > that is ALL i am saying. > > > > for you to tell me that MY personal experience is not reality is just > wrong. > > because i can attest to you it IS reality for i am living it and > > experiencing it. > > and i am NOT the only one. there are many many many of us out there who are > > not struggling. > > our voices deserve to be heard, too. > > > > i don't know why this is so hard for some of you to understand. > > > > i'm not trying to argue here, but really this is starting to aggravate me > > now. > > > > my experience is real and valid. > > and i am going to get the word out there. > > > > On Tue, Sep 16, 2008 at 10:11 AM, and FRANK <michdock@... > >wrote: > > > > > Most stories I have seen in the media have been pretty positive. > > > The REALITY is that no matter how much joy your child with ds might > > > ultimately bring you, it's not all roses. > > > I have 3. Maverick, 17, was not aborted and we adopted him at birth. > His > > > has been the best story of the three, but there were heartaches.. heart > > > surgery, other health issues, and of course, inclusion issues within the > > > family, church, and school. Still, I would consider it a positive story. > > > , 46, was placed in an institution and raised there until he was 22 > > > when they were " deinstitutionalizing " the US in the 70's and 80's. He > now > > > lives with us as a very important part of our family. He has no speech, > > > limited abilities, a pace maker, and he most wonderful smile you could > ever > > > ask for. No family involvement, we are his family. I think THAT is a > > > success story. > > > Logan, 6, born to a mother who didn't want him but kept him. CPS took > > > away 7 others, but always gave Logan back. He was pretty much neglected > for > > > 6 years. We got him 4 months ago, not walking, not speaking, and > behaviors > > > that were off the charts. He's walking now, and signing and has more > > > speech. I'm homeschooling him due to inclusion issues. We are still > sorting > > > out his health issues. But the adoption will be finalized soon... THAT > is a > > > good story. > > > None of these stories is all sweet and nice. They ALL have issues, and > > > they always will because there ARE health issues that go with DS. And > > > there will always be inclusion issues because no matter how much the > world > > > has changed, it still has a way to go. And there will be families who > will > > > not abort because they don't believe it's right, and then they will not > > > accept, and/or neglect and abuse their children. > > > I don't really know how you can " balance " that out. It is what it is. > We > > > are blessed to have all 3 of these guys as a part of our family, but > their > > > lives have not always been blessed. There are situations in each of > their > > > lives that I would love not to have been or to be there, but they make > them > > > who they are and they most CERTAINLY make ME who I am. > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 let me state AGAIN, emphatically and for the last time. i am NOT sugarcoating anything! it's wonderful for you to be honest. i would ask of nothing less. and i also ask that the parents of children who are not struggling in the way depicted so often in the media ALSO share their just as valid and just as honest stories. why is this so hard to understand? we are ALSO being honest. On Tue, Sep 16, 2008 at 1:58 PM, <cmancari@...> wrote: > Ana, > > I'm not saying we should be saying " wait and see " but if I'm asked to be > honest it hasn't always been easy and no, it's not always been easy with my > two typically developing boys and it's especially not been easy with my > stepdaughter. > > I will tell anyone who asks there are no guarantees in this world. > Children don't come stamped " guaranteed not to cause you heartache. " If > anything, they probably should come with a black box warning .... " Sure to > bring you plenty of tears and heartache, but don't worry they also bring you > plenty of laughter, joy and love. " > > I think the biggest fear is going to the opposite end of the spectrum > (i.e., totally sugar-coating it). I also think that having stories that > tell of the joy in the midst of the pain is good. I know when I had Nick I > tended to avoid the totally negative information and the totally positive > information. I'll admit I tended to view Nick as a typical baby with a > little something extra. > > I agree the media and the medical establishment tend to paint more of a > gloom and doom forecast than it will be alright. > > Keep working at your project, but consider adding a section for the not so > rosy pictures that have the uplifting " we'd do it all again " message. > > Cari > > > > Re: I Need Your Story! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > that's great you have seen some positive stories. that is wonderful. > > > > i have , too, but not very many. > > > > > > > > the REALITY is that it's not all roses to raise children, period. > > > > raising children can be hard for all. typical or nontypical. > > > > > > > > my point is, not ALL of us are struggling and having heartache. > > > > seriously, this is true. > > > > > > > > the more this list tells me that i am not being realistic and > sugarcoating > > > > just further cements the fact that the stories of those of us who are not > > > > struggling and having heartache are getting out. > > > > > > > > so many of you think that every single one of us are having a hard time > of > > > > some sort. > > > > and that if we are not having a hard time YET, we most certainly will in > > the > > > > future. > > > > > > > > this is just not the case for all of us. > > > > our stories are just as valid as yours and ALL stories deserve to be > heard. > > > > > > > > the ones where things are not a struggle just as much as the ones where > > > > things are a struggle. > > > > > > > > that is ALL i am saying. > > > > > > > > for you to tell me that MY personal experience is not reality is just > > wrong. > > > > because i can attest to you it IS reality for i am living it and > > > > experiencing it. > > > > and i am NOT the only one. there are many many many of us out there who > are > > > > not struggling. > > > > our voices deserve to be heard, too. > > > > > > > > i don't know why this is so hard for some of you to understand. > > > > > > > > i'm not trying to argue here, but really this is starting to aggravate me > > > > now. > > > > > > > > my experience is real and valid. > > > > and i am going to get the word out there. > > > > > > > > On Tue, Sep 16, 2008 at 10:11 AM, and FRANK <michdock@...<michdock%40msn.com> > > >wrote: > > > > > > > > > Most stories I have seen in the media have been pretty positive. > > > > > The REALITY is that no matter how much joy your child with ds might > > > > > ultimately bring you, it's not all roses. > > > > > I have 3. Maverick, 17, was not aborted and we adopted him at birth. > > His > > > > > has been the best story of the three, but there were heartaches.. heart > > > > > surgery, other health issues, and of course, inclusion issues within > the > > > > > family, church, and school. Still, I would consider it a positive > story. > > > > > , 46, was placed in an institution and raised there until he was > 22 > > > > > when they were " deinstitutionalizing " the US in the 70's and 80's. He > > now > > > > > lives with us as a very important part of our family. He has no speech, > > > > > limited abilities, a pace maker, and he most wonderful smile you could > > ever > > > > > ask for. No family involvement, we are his family. I think THAT is a > > > > > success story. > > > > > Logan, 6, born to a mother who didn't want him but kept him. CPS took > > > > > away 7 others, but always gave Logan back. He was pretty much neglected > > for > > > > > 6 years. We got him 4 months ago, not walking, not speaking, and > > behaviors > > > > > that were off the charts. He's walking now, and signing and has more > > > > > speech. I'm homeschooling him due to inclusion issues. We are still > > sorting > > > > > out his health issues. But the adoption will be finalized soon... THAT > > is a > > > > > good story. > > > > > None of these stories is all sweet and nice. They ALL have issues, and > > > > > they always will because there ARE health issues that go with DS. And > > > > > there will always be inclusion issues because no matter how much the > > world > > > > > has changed, it still has a way to go. And there will be families who > > will > > > > > not abort because they don't believe it's right, and then they will not > > > > > accept, and/or neglect and abuse their children. > > > > > I don't really know how you can " balance " that out. It is what it is. > > We > > > > > are blessed to have all 3 of these guys as a part of our family, but > > their > > > > > lives have not always been blessed. There are situations in each of > > their > > > > > lives that I would love not to have been or to be there, but they make > > them > > > > > who they are and they most CERTAINLY make ME who I am. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 I just want to say that we live each day for what it is - 1 day we have of life together. We are blessed to have Presley and regardless of how difficult it is or may become, I will view it as 'rosey'. We are also trying to share the rosey reality via our site www.UpsideOfDown.org as we say, there is always an UPSIDE to DOWN syndrome. Teana Austin, TX > > > > > > > > > > > > > Most stories I have seen in the media have been pretty positive. > > > > > > > The REALITY is that no matter how much joy your child with ds might > > > > > > > ultimately bring you, it's not all roses. > > > > > > > I have 3. Maverick, 17, was not aborted and we adopted him at birth. > > > His > > > > > > > has been the best story of the three, but there were heartaches.. heart > > > > > > > surgery, other health issues, and of course, inclusion issues within > > the > > > > > > > family, church, and school. Still, I would consider it a positive > > story. > > > > > > > , 46, was placed in an institution and raised there until he was > > 22 > > > > > > > when they were " deinstitutionalizing " the US in the 70's and 80's. He > > > now > > > > > > > lives with us as a very important part of our family. He has no speech, > > > > > > > limited abilities, a pace maker, and he most wonderful smile you could > > > ever > > > > > > > ask for. No family involvement, we are his family. I think THAT is a > > > > > > > success story. > > > > > > > Logan, 6, born to a mother who didn't want him but kept him. CPS took > > > > > > > away 7 others, but always gave Logan back. He was pretty much neglected > > > for > > > > > > > 6 years. We got him 4 months ago, not walking, not speaking, and > > > behaviors > > > > > > > that were off the charts. He's walking now, and signing and has more > > > > > > > speech. I'm homeschooling him due to inclusion issues. We are still > > > sorting > > > > > > > out his health issues. But the adoption will be finalized soon... THAT > > > is a > > > > > > > good story. > > > > > > > None of these stories is all sweet and nice. They ALL have issues, and > > > > > > > they always will because there ARE health issues that go with DS. And > > > > > > > there will always be inclusion issues because no matter how much the > > > world > > > > > > > has changed, it still has a way to go. And there will be families who > > > will > > > > > > > not abort because they don't believe it's right, and then they will not > > > > > > > accept, and/or neglect and abuse their children. > > > > > > > I don't really know how you can " balance " that out. It is what it is. > > > We > > > > > > > are blessed to have all 3 of these guys as a part of our family, but > > > their > > > > > > > lives have not always been blessed. There are situations in each of > > > their > > > > > > > lives that I would love not to have been or to be there, but they make > > > them > > > > > > > who they are and they most CERTAINLY make ME who I am. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Personally, I would have loved for the geneticist we saw to have known some positive things to tell us. When Nic was born she painted a very bleak future for him (and us) and this is a geneticist from CHOP-supposedly THE best children's hospital in the country. One reason why we DON'T us CHOP but rather duPont (Delaware) As with any child there are good times and bad. Like , PA has a wonderful Medicare system-we pay for nothing! Nic had the heart surgery at 11 weeks old and then diagnosed w/ a seizure condition at age 2. ADHD etc etc etc. He's also got a great sense of humor and LOVES people-not always a good thing. Di Judge not, and ye shall not be judged. Condemn not, and ye shall not be condemned. Forgive, and ye shall be forgiven. Luke 6:37 Re: I Need Your Story! > > > > i think what i am going to do is a very good thing. > MOST stories about DS that *I* have seen in the media have not been good > at > all. > i am trying to balance that out. > > where did i say i was going to post photos of children on the internet? > > On Tue, Sep 16, 2008 at 6:30 AM, CSBC <cindysuecomcast (DOT) > <mailto:cindysue%40comcast.net> net> wrote: > >> >> >> >> >> i'm not sugar coating anything. >>> i'm balancing out the negative stories i read in the media. >>> >>> families with typical children have to deal with seizures and autism, > too. >>> it's not just a DS thing. >>> >>> >>> I know seizures and autism CAN be separate and is also found in typical >> children, but 's is related to his DS. The extra genes being >> expressed have really messed up his neurobiological function. Just as >> some >> kids who are 'typical " have heart conditions, other kids with DS (about > 50%) >> have heart problems directly related to DS. The extra genetic material >> has >> affected their cardiac system. Those parents whose children are doing > well, >> both medically and emotionally (and I think one would have to wait till > teen >> years as some things like seizures pop up later) are very fortunate. >> >> There are many positive stories in the media, too. There are many >> self-advocates who are really doing a great job promoting DS awareness. > Then >> there are those who quietly live in their communities who are doing the > same >> thing..without realizing it. Anyway, go for it......but I do want to >> caution you that there are some people who will take the pictures of our >> children and use them in negative ways on the internet. Make sure the >> pictures cannot be copied. >> >> How old is your child? >> >> >> > > -- > > <-THIS IZ A TRANCE MISSION FRUM THEE VOOG MUTHERSHIP-> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 When was born I had everything caught up. I was ready. and he was right on time. Now he is 43 years old and I haven't been caught up since. Isn't it pathetic? I probably have lots of company. Jessie ************** 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...
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