Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Respectfully disagree. My Jenna is not " medically sick " . She has a, I don't know, " condition " (?) that prevents her from doing things in an expected fashion. But you will rarely find a healthier child. My husband and I have discussed this on several occasions. Maybe it's the vitiams; maybe it's that she does not feel pain the way others do, who knows. But in our house at least, the ASD individual is the healthy one. Valeri Re: Autism mortality stats For what ever reason few are looking at autism beyond behavior.We don't have children that are normal beyond brain issues.These are medically sick kids ,everytime someone remarks on the fact their autistic kid is never sick when every other member of the family is sick I recognize it as a huge red flag.That was my kid who is now rolling one autoimmune disease into another and one regression after another.We have been taking a serious look at autism with my daughters ped.neuro who is involved in clinical research locally.What she is finding is a level of dysautonomia.What we thought of as seizure behavior are periods of her blood pressure dropping suddenly and dangerously.She is looking for similarities in other autistics and finding them.Agnes > Oh my God! Me too, in the dark, I mean. Never thought about this issue. I > would like to hear more on this topic as well. Like there isn't enough to > worry about already, but I would like to know more. Are there things to watch > for? Or things to avoid? Or things to do to decrease the risks? Why would the > mortality rate be an issue at all? Thanks for any and all info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 high percentages of people with autism get seizures, I can explain why but twould make a couple of emails to explain, to be more succint, go to www.ccid.org Kathy Re: Autism mortality > > > > stats > > > > > > > > I'm interested too. really this is the first I've > > > > heard this > > > > mentioned. > > > > Have I been in the dark on this issue? > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 in total agreement, would like to see Jyonouchis study, this speaks volumes of the stealth virus! (could you send them to me :0) www.ccid.org Kathy Re: Autism mortality stats > I respectfully disagree.Children with autism have something that is > wrong with the body causing the brain effects.If autism was merely > brain damage that child might actually be healthy. > Not feeling pain in the way others do is a symptom of > dysautonomia.This and ten other things are common in autistics and > are considered symptoms of autism.Another of the most common findings > of autistics is atypical immune findings.Everything from Tcells to > Bcells and complement systems are reved up to high or too low.What > Immunologist have found is both ends of a pendulem.Jyonouchi's study > which is most recent includes well over 100 autistics and you can > diferentiate autistics from normal healthy siblings.She is only > looking at cytokines.Agnes > > > Oh my God! Me too, in the dark, I mean. Never thought about this > > issue. I > > > would like to hear more on this topic as well. Like there isn't > > enough to > > > worry about already, but I would like to know more. Are there > > things to watch > > > for? Or things to avoid? Or things to do to decrease the risks? > Why > > would the > > > mortality rate be an issue at all? Thanks for any and all info. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 My child is a healthy one too. she gets head colds like everyone else. she is a fussy eater, and does not eat vegies, but i try to get her to eat fruit and things on bread, and give her an iron supplement throughout the week. I don't know, i don't wish to " stay in the dark " where autism is concerned, but i don't want to sit here and worry about things that may or may not ever happen with my child. I have enough to think about at present, just getting her through each day at school, maybe i'm sticking my head in the sand. i'm not going to take on too much here at present. I don't understand autism, i don;t understand how my daughters brain works, {i wish the heck i did!!}, but i just have to deal with it the best way i know how. i'm sounding a bit depressed aren't I. I guess, i've come to a conclusion that if we just concentrated more on our kids than trying to find a reason for everything all the time, our kids might be better off. No we should not put everything down the the fact that they are autistic, as i think being autistic should not mean your daughter is going to have heavier periods,[why should it]. I guess i want to try and treat Hannah as " normal " as possible as she does have an older sister and younger brother. i'll finish as i'm raving now. can anyone see what i'm saying???? or doesn't any of it make any sense??? cheryl Re: Autism mortality stats For what ever reason few are looking at autism beyond behavior.We don't have children that are normal beyond brain issues.These are medically sick kids ,everytime someone remarks on the fact their autistic kid is never sick when every other member of the family is sick I recognize it as a huge red flag.That was my kid who is now rolling one autoimmune disease into another and one regression after another.We have been taking a serious look at autism with my daughters ped.neuro who is involved in clinical research locally.What she is finding is a level of dysautonomia.What we thought of as seizure behavior are periods of her blood pressure dropping suddenly and dangerously.She is looking for similarities in other autistics and finding them.Agnes > Oh my God! Me too, in the dark, I mean. Never thought about this issue. I > would like to hear more on this topic as well. Like there isn't enough to > worry about already, but I would like to know more. Are there things to watch > for? Or things to avoid? Or things to do to decrease the risks? Why would the > mortality rate be an issue at all? Thanks for any and all info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 While loads of research and testing may support this and that for the eventually early demise or not, of our children. What does all this prove? What can we do about it? I mean, you can detox, reprogram, etc and so forth but the child still has autism. Whether born or not, vaccine or not. It is very good to be well aware of what is out there information wise and do our best to make their lives more livable and enjoyable, but let's look at something positive!! I also look at it this way, any of us can have a debilitating accident or disease and end up autistic like. We would have to go through the same things. And with a damaged brain, common sense would tell me that something would have to give elsewhere. Visit iWon.com - the Internet's largest guaranteed cash giveaway! Click here now for your " Thank You " gift: http://www.iwon.com/giftcenter/0,2612,,00.html?t_id=20157 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Cheryl - I understand you completely Penny :-)-------------------------------------------------------- " Just remember this: Plenty of Horsepower, No Traction " - R. S. on " If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.Let him step to the music he hears, however measured or far away. " --Henry Thoreau Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 thanks penny, glad someone does!!!!! cheryl -----Original Message-----From: Penny [mailto:nospam@...]Sent: Thursday, 6 September 2001 1:16 PMAutism_in_Girls Subject: RE: Re: Autism mortality stats Cheryl - I understand you completely Penny :-)--------------------------------------------------------"Just remember this: Plenty of Horsepower, No Traction" - R. S. on"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.Let him step to the music he hears, however measured or far away."--Henry Thoreau Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 I believe I understand what you are saying, Cheryl, and I agree. Both of my daughters who are still at home are healthy and I think part of it is due to the vitamins they take. I had to take Jan (the one with autism) to the doctor with complications due to allergies (I'd had a similar problem the week before) and the doctor noted that Jan hadn't had to come to the clinic because she was sick since 1998! I also get tired of people trying to relate everything, every behavior, every DIFFERENCE about my daughter to autism. " She's left handed " -- with all the left-handed people on both sides of our families I'd have been surprised if I hadn't had at least one child who was. " She repeats dialogue from shows verbatim " (Yeah, well when my " gifted " daughter was younger she could recite the whole Charlie Brown Great Pumpkin cartoon from memory! Our family is very theatre-oriented and we are always " doing lines " ) Many of the traits Jan displays I see in myself so I know where she got them. When it comes right down to it, as far as our daughters are concerned, what we know about autism is less important than what we know about how to help these girls, IMO. Maybe we are each choosing a different route but hopefully we will all reach the same destination -- happy daughters who are able to function in, and adapt well to, this crazy world we live in! --- Mark Sommerfeld <cmsommerfeld@...> wrote: > My child is a healthy one too. she gets head colds > like everyone else. she > is a fussy eater, and does not eat vegies, but i try > to get her to eat fruit > and things on bread, and give her an iron supplement > throughout the week. I > don't know, i don't wish to " stay in the dark " where > autism is concerned, > but i don't want to sit here and worry about things > that may or may not ever > happen with my child. I have enough to think about > at present, just getting > her through each day at school, maybe i'm sticking > my head in the sand. i'm > not going to take on too much here at present. I > don't understand autism, i > don;t understand how my daughters brain works, {i > wish the heck i did!!}, > but i just have to deal with it the best way i know > how. i'm sounding a bit > depressed aren't I. I guess, i've come to a > conclusion that if we just > concentrated more on our kids than trying to find a > reason for everything > all the time, our kids might be better off. No we > should not put everything > down the the fact that they are autistic, as i think > being autistic should > not mean your daughter is going to have heavier > periods,[why should it]. I > guess i want to try and treat Hannah as " normal " as > possible as she does > have an older sister and younger brother. i'll > finish as i'm raving now. can > anyone see what i'm saying???? or doesn't any of it > make any sense??? cheryl > > Re: Autism mortality > stats > > For what ever reason few are looking at autism > beyond behavior.We > don't have children that are normal beyond brain > issues.These are > medically sick kids ,everytime someone remarks on > the fact their > autistic kid is never sick when every other member > of the family is > sick I recognize it as a huge red flag.That was my > kid who is now > rolling one autoimmune disease into another and one > regression after > another.We have been taking a serious look at autism > with my > daughters ped.neuro who is involved in clinical > research locally.What > she is finding is a level of dysautonomia.What we > thought of as > seizure behavior are periods of her blood pressure > dropping suddenly > and dangerously.She is looking for similarities in > other autistics > and finding them.Agnes > > Oh my God! Me too, in the dark, I mean. Never > thought about this > issue. I > > would like to hear more on this topic as well. > Like there isn't > enough to > > worry about already, but I would like to know > more. Are there > things to watch > > for? Or things to avoid? Or things to do to > decrease the risks? Why > would the > > mortality rate be an issue at all? Thanks for any > and all info. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Know what you mean, Hannah will do similar things. It could bug us if we let it, but we try not to let it anymore. she is good at explaining why and what she is doing, so that is ok. I guess it is when she wants to do it in public that bugs me, as other people just donlt understand. No they are definitely not " crazy " , they just have an overactive imagination, and it is a wonderful thing in many resspects, but sometimes, it would be good if there was a " stop " button, just for a little while!!!! Cheryl Re: Autism mortality stats I agree about not relating everything to the fact that they are autistic. Running around in the yard and shrieking, while not pleasant to listen to, is not because she's 'crazy'. If 4 tires are stacked on top of each other next to my husbands shop and she scoops up rocks and puts them down the hole, stating " I'm washing them, this is my washing machine " , I say halleluieh and it's great!! He thinks it's weird and she should stop because it bugs him...arghhh Deanna in Oregon > > > Oh my God! Me too, in the dark, I mean. Never > > thought about this > > issue. I > > > would like to hear more on this topic as well. > > Like there isn't > > enough to > > > worry about already, but I would like to know > > more. Are there > > things to watch > > > for? Or things to avoid? Or things to do to > > decrease the risks? Why > > would the > > > mortality rate be an issue at all? Thanks for any > > and all info. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Yes, i guess that is what i was trying to say. People straight away always associate everything with autism. i was doing it myself for awhile too i guess. Not anymore. Just cause they have this problem doesen't mean their whole body has the problem. you have to try and give them credit, and not be so protective, [though i am, and always will be i guess]. cheryl Re: Autism mortality > stats > > For what ever reason few are looking at autism > beyond behavior.We > don't have children that are normal beyond brain > issues.These are > medically sick kids ,everytime someone remarks on > the fact their > autistic kid is never sick when every other member > of the family is > sick I recognize it as a huge red flag.That was my > kid who is now > rolling one autoimmune disease into another and one > regression after > another.We have been taking a serious look at autism > with my > daughters ped.neuro who is involved in clinical > research locally.What > she is finding is a level of dysautonomia.What we > thought of as > seizure behavior are periods of her blood pressure > dropping suddenly > and dangerously.She is looking for similarities in > other autistics > and finding them.Agnes > > Oh my God! Me too, in the dark, I mean. Never > thought about this > issue. I > > would like to hear more on this topic as well. > Like there isn't > enough to > > worry about already, but I would like to know > more. Are there > things to watch > > for? Or things to avoid? Or things to do to > decrease the risks? Why > would the > > mortality rate be an issue at all? Thanks for any > and all info. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Cheryl, Everything you said makes perfect sense to me. I too have enough to worry about without having to panic over mortality rates. I am choosing to block this piece of info out until someone somewhere can show me how to prevent it. It is all very well knowing something may happen, but what's the point if you don't know how to stop it? I'd rather pretend for now that " snippet of joy " doesn't affect me or ! Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 I have a NT daughter (), who is 2 1/2, and a daughter who has a diagnosis of ASD (Jenna), 3 1/2. Because they are so close in age (12 months and 4 days), it's easy to see (now, a year later) how the " experts " could miss Jenna's Autism. Kids are just kind of weird. A lot of the things I kept telling Jen's pediatrician about, insisting they were " signs " of Autism are just things kids do. A couple of weeks ago Jenna insisted on using a specific plate. She was hysterical and I chalked it up to Autism. This week freaks if she doesn't have " the Barney bowl " at every meal. I was just sure Jenna was starting some new obsession, and she's already over the plate. It can be hard to relax though, when you were right before and people pooh-poohed you. There's a tendency to think you are the voice of reason in all things and everyone else is in denial. Valeri Re: Autism mortality stats I agree about not relating everything to the fact that they are autistic. Running around in the yard and shrieking, while not pleasant to listen to, is not because she's 'crazy'. If 4 tires are stacked on top of each other next to my husbands shop and she scoops up rocks and puts them down the hole, stating " I'm washing them, this is my washing machine " , I say halleluieh and it's great!! He thinks it's weird and she should stop because it bugs him...arghhh Deanna in Oregon > > > Oh my God! Me too, in the dark, I mean. Never > > thought about this > > issue. I > > > would like to hear more on this topic as well. > > Like there isn't > > enough to > > > worry about already, but I would like to know > > more. Are there > > things to watch > > > for? Or things to avoid? Or things to do to > > decrease the risks? Why > > would the > > > mortality rate be an issue at all? Thanks for any > > and all info. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 kudos! Thats exactly how we feel about our daughters....differences! Quote Link to comment Share on other sites More sharing options...
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