Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 The choice you make has to be your own. however, here is the information on thanatophoric dysplasia: Infants with thanatophoric dysplasia have disproportionately short arms and legs with extra (redundant) skin folds. Other characteristic signs of the disorder include a narrow chest, small ribs, underdeveloped lungs, and an enlarged head with a large forehead and prominent, wide-spaced eyes. Infants with type 1 thanatophoric dysplasia also have curved thigh bones and flattened bones of the spine (platyspondyly). An unusual head shape called a cloverleaf skull is seen with type 2 thanatophoric dysplasia. The term thanatophoric is Greek for " death bearing. " Infants with thanatophoric dysplasia are usually stillborn or die shortly after birth from respiratory failure; however, a few affected children have survived into childhood with extensive medical help. These children are severely mentally retarded due to a variety of brain abnormalities and have difficulty breathing on their own. Males and females are affected equally. This is not good news; I hope you find peace in your decision. Whims _____ From: dwarfism [mailto:dwarfism ] On Behalf Of suzziefrogq Sent: Tuesday, September 27, 2005 4:21 PM dwarfism Subject: Choices HELLO, MY NAME IS DEDTRA AND IV BEEN TOLD MY BABY HAS THANATOPHORIC DISPLASIA AND NO CHANCE OF SURVIVAL.WE HAVE DONE A DNA TEST AND ARE WAITING FOR RESULTS SOME TIME THIS WEEK.MY QUESTION IS FOR MOTHERS WHO HAD TO MAKE THE CHOICE THAT LIES AHEAD OF ME . I HAVE RESERCHED EVERY THING AND ALL THE SAME END . I WOULE LIKE TO TALK TO ANYBODY WHO COULD HELP ME MAKE THIS ANY EASIER === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 While everything Whims has provided you with is the correct definition as to Thanatophric Dysplasia the key factor to consider is whether the diagnosis is ABSOLUTELY correct. I have seen other situations were Drs. that are not familiar with Dwarfism have incorrectly made this diagnosis. I am assuming that the DNA test is definitive, but I think I would still seek a second opinion. Here are some options: I. Jr., M.D. Chief, Division of Medical Genetics or Nicholson, M.S., M.C. Skeletal Dysplasia Clinic Alfred I. duPont Institute P.O. Box 269 1600 Rockland Road Wilmington, DE 19899 Telephone: (302) 651-5916 Fax: (302) 651-5033 Kathleen S. " Dee " Clinical Coordinator Greenberg Center for Skeletal Dysplasias s Hopkins Hospital - Blalock 1012-C 600 North Wolfe Street Baltimore, MD 21205 Telephone: (410) 614-0977 Fax: (410) 614-2522 E-mail: deedee@... Choices > > > > HELLO, MY NAME IS DEDTRA AND IV BEEN TOLD MY BABY HAS THANATOPHORIC > DISPLASIA AND NO CHANCE OF SURVIVAL.WE HAVE DONE A DNA TEST AND ARE > WAITING FOR RESULTS SOME TIME THIS WEEK.MY QUESTION IS FOR MOTHERS WHO > HAD TO MAKE THE CHOICE THAT LIES AHEAD OF ME . I HAVE RESERCHED EVERY > THING AND ALL THE SAME END . I WOULE LIKE TO TALK TO ANYBODY WHO COULD > HELP ME MAKE THIS ANY EASIER > > > > > > > > === > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 , I feel for you dear. But from my own experience there was not a whole lot of pain, so maybe that will take a little of the load off. I don't know how much a small child might have but best of luck to you and Mayo. Patsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 , Thank-you. As a mother who is making the choice for my daughter (and Lord know's I will second guess myself until she has surgery), it's nice to have someone remind me that all I can do for Maya is the best I can. I break down every once in a while knowing how much pain she will be in and I wonder if it's worth it ( I know the answer is YES). But, it's nice to hear someone else say it too!!! THANK-YOU FROM THE BOTTOM OF MY HEART!!! (maya's mom) > > Hi All, > In an idea situation, you wouldn't have to make a choice when a child > is born, that can affect her the rest of her life. > But in reality, as a parent all you can do is: > The best you can, with what you've got, where you are NOW. > > > The Original > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Through our years as parents we will see kids be in pain and shed tears. It's not easy being a parent sometimes. We do the best; we guide and bless. There are so many success stories with CI surgeries and there are some that have been given a road with challenges along the way. But you will make it through this by finding a great support group and learning all that you can learn. Surgery is never easy and I say that as a mom of a little miracle - a one pound little guy that is now four and has more surgeries than I can count on my hands. So if you need to vent feel free to write to me off the list Kim B Advanced Bionics 1994 > > > > Hi All, > > In an idea situation, you wouldn't have to make a choice when a child > > is born, that can affect her the rest of her life. > > But in reality, as a parent all you can do is: > > The best you can, with what you've got, where you are NOW. > > > > > > The Original > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , Less than 48 hours after was implanted, we went down to a big music event at the ball field in ton. I will never forget her running around the field with her little hat on like nothing had just happened 48 hours before. Holly had a little wobbly issue so it took her about 72 hours to be back out in the yard playing with the kids, but she wasn't in pain, just looked drunk You will be amazed as this journey begins...good luck to Maya. CI 8/99 Holly CI 12/99 Re: Choices , Thank-you. As a mother who is making the choice for my daughter (and Lord know's I will second guess myself until she has surgery), it's nice to have someone remind me that all I can do for Maya is the best I can. I break down every once in a while knowing how much pain she will be in and I wonder if it's worth it ( I know the answer is YES). But, it's nice to hear someone else say it too!!! THANK-YOU FROM THE BOTTOM OF MY HEART!!! (maya's mom) > > Hi All, > In an idea situation, you wouldn't have to make a choice when a child > is born, that can affect her the rest of her life. > But in reality, as a parent all you can do is: > The best you can, with what you've got, where you are NOW. > > > The Original > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 I think we'd have computers whether we were social butterflies or not. In fact, the computer has just opened up so many new ways of socializing really. So I doubt being more social would have prevented inventions. Of course everyone is simply living their life - that's what we do. I am just pointing out that having a disability is limiting ones choices. One is not choosing to be social or not social if one can't be social due to various social disabilities. In other words, there is not a choice. If everyone is given, say, 10 options in life to choose from but the child with a disability is given option 7 no matter what he wants to do. Do we then say he has "chosen" option 7? Sports minded people participating in sports is no different - they are making choices to participate or not. But they have the choice available to them. I don't see AS as just a different way of thinking. I think that is where we miss eachother on this subject because I feel that you do. It feels to me like you are making excuses for the problems caused by the AS - if he can't do something, then you rationalize that "hey, not everyone can do that." And so it then becomes his choice not to do that because it isn't something he is good at doing. But it's not a choice, is what I am saying. He may not be good at doing "it" (whatever "it" is) but it isn't because he's made a choice to not do it. What I am saying is that AS is a disability that limits choices. I am not saying everyone has to be a certain way or everyone has to be social to an nth degree. We all have strengths and weaknesses, likes and dislikes that shape who we are. I do not consider autism to be part of those strengths and weaknesses - it's a disability that limits the choices one can make. So often I've seen people attribute their entire personality to autism, like it's an extra appendage they were given at birth. (i.e. "Yeah! Because I have autism, I'm really smart!") But I don't give it that much credit. I think people with autism would be smart without autism. The autism isn't making them smart, it's preventing their ability to shine and demonstrate themselves fully. It's a disability that prevents the natural personalities from coming out. My kids are already brilliant, beautiful and wonderful. They did not need autism to bring that out in them. And they would be even more so if not held back by autism. But more important, they would have more choices available to them in life if they did not have the disability of autism. They could play a sports game...or not. Because they could be coordinated enough and savvy enough to participate and decide if they liked playing or not. Right now, they wouldn't do it because they can't do it. And that's not a choice that they have made - like preferring to read instead of play baseball. Maybe if we consider another disability it would be easier to explain what I mean. Take any disability - dyslexia, for instance. Do we not bother to teach these kids how to read and just say, "Well, not everyone likes to read?" Do we then say they are making a choice to not be readers? I say this is not a choice that they made, the disability is making the choice for them. Is getting therapy to learn how to read fun? NO! My youngest whines and cries sometimes before he goes to therapy because it is HARD WORK! He doesn't like it. He says, "I read just fine!" But I think it's important to his ability to live and work independently someday to learn how to read. Perhaps he will choose not to read for pleasure someday when he is an adult and that will be fine with me. Because it will be a choice he has made with options available. We will live through these years and I will support him while he stresses out over learning because learning is hard work for him - harder for him than the average person. But it's necessary to his ultimate well being. I'd rather he suffer some now and learn than grow up without skills and spend a lifetime regretting paths he could not take because he can't read. Or have him spend years in school failing - would that not be even harder work? I think it would! You could place in any disability really but I would give the same kind of examples. I hope you understand what I mean to say. RoxannaAutism Happens ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Just wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Hey Roxanna ....we would have computer whether we were social butterflies or not...yes...but you know what...I bet we would not have computer if there were no Aspies!!!! LOL! jan Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: Sue Ann <iamgr8fulgmail (DOT) com>Subject: ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Just wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Roxanna, that's something how so many kids on the spectrum can't sleep at night. My son was up the whole night, last night. couldn't sleep. he always had this problem. and even thought he didn't sleep the whole night. He's not tired in the morning. He will still go to his summer program, still go swimming, etc...and I'm drinking the energy drinks to keep up. LOL. RoseRoxanna <madideas@...> wrote: Thanks Rose, I'm glad people get what I tried explaining. I sometimes want to give up too. It can get hard (and tedious!) Just the past few weeks, my 11 yo was not sleeping at night. All night long he was up and thought nothing of walking up to me and talking to me at any time of the night. We saw the doc and had the meds adjusted - what a difference! No more screaming all day long and SLEEP AT NIGHT! I think I got my second wind...again...lol. RoxannaAutism Happens ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict=2 0exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or=2 0not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Ju st wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now! No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.7/1581 - Release Date: 7/30/2008 6:56 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Guess what ...we were up all night too! Ugh! Summer....it is too much and my eyes are about to fall out of my head...I gonna lay down.... Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: Sue Ann <iamgr8fulgmail (DOT) com>Subject: ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict=2 0exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or=2 0not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Ju st wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now! No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.7/1581 - Release Date: 7/30/2008 6:56 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Guess what ...we were up all night too! Ugh! Summer....it is too much and my eyes are about to fall out of my head...I gonna lay down.... Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: Sue Ann <iamgr8fulgmail (DOT) com>Subject: ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict=2 0exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or=2 0not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Ju st wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now! No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.7/1581 - Release Date: 7/30/2008 6:56 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Guess what ...we were up all night too! Ugh! Summer....it is too much and my eyes are about to fall out of my head...I gonna lay down.... Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: Sue Ann <iamgr8fulgmail (DOT) com>Subject: ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict=2 0exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or=2 0not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Ju st wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now! No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.7/1581 - Release Date: 7/30/2008 6:56 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 My son (12, Aspergers) has never had a problem with his sleep. He sleeps way better than my daughter, who's NT. On occasion, he might have trouble falling asleep and he'll stay up late if I let him, but he's typically in bed by 9pm during the school year and 9:30-10pm during the summer. And for all I can tell, he sleeps through the night. Every once in awhile he'll say he woke up and had trouble going back to sleep, but this is definitely the exception and not the rule. I feel for you moms who don't get enough sleep! Not good! I wanted to share that not all Aspie kids have sleep problems though. ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict=2 0exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or=2 0not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Ju st wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now! No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.7/1581 - Release Date: 7/30/2008 6:56 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.10/1584 - Release Date: 7/31/2008 12:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 In response to your post....... You're right on about Ben lin!!! (Maybe I'm out of the loop,,,,but I've never heard that people with AS are genius's). As far as people with AS doing ALL of the inventing.....hee hee.....I didn't say that. My son, for example,,,,,,,wouldn't put the time into it and could never invent....hee hee.Hey....maybe you just don't' want to see it the other way? I thought we were just having discussions. Going back and forth in a good way. I would like to think that we ALL learn something from the posts? Whether it be that we don't agree with what's being said,,,,or maybe we do agree or hey,,,,,,maybe we're all a bit right? Robin From: Sue Ann <iamgr8fulgmail (DOT) com>Subject: ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Just wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.10/1584 - Release Date: 7/31/2008 12:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 I don't know if you are out of the loop or not but that is a common false premise that is often stated about people with AS - that they are all exceptionally smart/brilliant/genius. And it's said a lot on this list as well. You are the one asserting that AS people are out there inventing everything or you are agreeing with Jan's posts in which she states the same thing. I am sure you can appreciate that I am trying to have this conversation with both you and Jan because you are the two who keep replying to it. I do not feel the need to tear apart every post to dissect whether you said this or she said that. You are agreeing with eachother and I am replying to the main ideas being presented by you both together in an attempt not to single things out and cause anyone to cry because I said it "wrong." My point in saying that this was not a discussion anymore is that no matter what example I give to disprove the latest theory or your agreement with Jan's latest theory, you start out in your reply agreeing with me and then you disagree via another example or reply to another example at the end of the post. Honestly, are you enjoying this discussion at this point? I feel like the conversation ceases to be meaningful and instead, it is just tedious and annoying. YOU are not tedious and annoying, the conversation we are having is getting that way. No matter what examples I provide, you will reply the same way. So I do not understand what the point is after so many "back and forths." We are just repeating the same things. While it was a conversation to start with, it's turning into something less than that for me. Especially with your last remark in which you state: "Hey...maybe you just don't want to see it the other way?" I disagree with that statement because I could hardly support my position and give my examples if I had not considered the other side of it. In order to come up with appropriate examples, I would have to have a handle on the "other perspective" or else I couldn't reply at all. I mean to say, it makes no sense for you to say that about me. I could give a dozen more reasons why that statement is not true about me but is that what you want? I don't think that everyone can always be right. I don't agree with the POV you and or you/Jan are putting forth in this thread and I don't feel like I should be put down because I disagree. I'm trying to disagree in a nice way but I do not think I am succeeding after your last remark. I'm comfortable with my POV, I can keep throwing examples around to prove why I think I'm right. But in the end, is that the point you are after? It's an honest question because I am becoming very lost in this discussion. RoxannaYou're UniqueJust like everyone else... ( ) Re: torn Date: Saturday, July 26, 2008, 3:10 PM Robin and Donna,It appears I'm in the same 'boat' as you two. My 18 yr old son soundsvery much like Robin's. And, like Donna, our son loves to travel onfamily vacations.I struggle with feeling sad that he doesn't socialize, other thanfamily and church and, rarely, someone his own age group. It waseasier in high school as it was a very small school and he belonged tothe academic team and such. But this first year of college has beenrough. I had always hoped he'd find it easier by the time he got tocollege.At the same time, I'm not sure he 'misses' socializing. He enjoys hisown company and reads, has a strict exercise routine (yes,OCD-ish) ,and loves his animals. And like Robin mentioned, he doesn't get those'mild freak-outs' after forced social situations.How do you ever know if you are doing the right thing? We have justdecided to stay informed, pray/meditate and have faith that it willunfold as it should.And I am grateful for this comforting forum.sue> > > I just gotta say one thing.....and I hope this comes out right. I > > get how this thread is talking about exposing our kids to all kind > > of experiences so that they can learn to deal and cope.......> >> > But,,,,,is there anyone out there, other than us, that has let their > > child just "be" and seen good things?> >> > We not only pulled him from traditional school for this last > > grade,,,,,,, but I don't put him in anything he doesn't want to try.> >> > He goes to the pool when he wants....or stays home if he doesnt' > > want to go. He rides bikes......or not. He takes our dog for a > > walk with his ltl sis,,,,,,,,, or not. We go to church.> >> > We visit friends..... ......... ..some days are hermit- > > days......others are wonderful.> > He doesn't freak like he used to,,,,as if he was "coming down" from > > interaction or having to keep it "together" all day.> >> > He talks to us. He's calmer.> > I guess we took a different approach.... .in a way. Maybe it was > > because the social stuff he "got" was all negative,,,, ,that we saw > > that not everyone enjoys being social.....> >> > I love to stay home. Love to see friends,,,but love to get home.> > Not all of us have "social" jobs........ .........> >> > So,,,,,I'm wondering if anyone else just lets their kid "be" with AS > > and doesn't try to mold it into something better for them. (Please > > don't take that wrong......cause I struggle from time to time with > > whether we should still be going to therapists, etc. I stopped > > them, too, cause we were told to always be "getting out there" and > > playing with more and more other kids to get experience on how to > > "be". We saw that Ian was nicer than most of the kids we were > > supposed to put him with. Sure,,,,,,,he talked aobut his > > games.....whatever, ,,,, but he was nicer. Ick.> >> > Anyway,,,,I hope I didn't offend. Just wondering if there were > > "others" like us.> >> > Hee hee.> >> >> > Robin> >> > Normal is just a cycle on a washing machine!! Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo. se/c-169901- resor-biljetter. html No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1577 - Release Date: 7/28/2008 6:55 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.10/1584 - Release Date: 7/31/2008 12:00 PM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.10/1585 - Release Date: 8/1/2008 6:39 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2008 Report Share Posted August 2, 2008 My son is actually a very good sleeper and always has been. I know I'm blessed in that way, and I just pray that he keeps it up as he gets older. It can be a big problem for many kids on the spectrum. > > Roxanna, that's something how so many kids on the spectrum can't sleep at night. My son was up the whole night, last night. couldn't sleep. he always had this problem. and even thought he didn't sleep the whole night. He's not tired in the morning. He will still go to his summer program, still go swimming, etc...and I'm drinking the energy drinks to keep up. LOL. > Rose > > Quote Link to comment Share on other sites More sharing options...
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