Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Hang in there Debbie. I know how you feel. I don't think I ever get past that - it kind of comes and goes. Try to focus on ways to help your ds improve his social skills. This is a positive action you can take and may help improve your depression being able to take action. There are books out there on teaching social skills that you can read and also, try to get connected with a social skill group as well might help. Just remember that everything is baby steps. RoxannaAutism Happens ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 I completely understand about up and down days. My husband and I seem to switch off and try to balance each other - when one of us is losing it we switch and focus on our younger son and the other focuses on Owen. But for the most part we are tryin to just be supportive, loving and focused on what he does well, which is so, so many things. Socially we've had a couple of instances where kids have approached him to play and he's either ignored them or reacted in a way that turned them off, so they've moved on. Luckily he's just 4, so he hasn't noticed, but it's broken my heart every single time. Now we try to help by supplying him with the words, and saying things like, " Why don't you go over and ask so-and-so to go on the slide iwth you? " or " Go tell so-and-so you want to play too! " Sometimes that works, sometimes it doesn't. I'm still looking for that magic bullet.... haven't found it yet. It helps to have my husband's support and it helps to have good days that are so, so good. But the bad days... man, sometimes they can just about kill me. On 10/26/07, and/or Robin Lemke <jrisjs@... > wrote: Debbie. It's ok. It's heartbreaking when our kids don't fit. It's a slap to the ego, the heart and the mind to know WHY they really don't fit, ya know? What's helped for us is letting everyone we know KNOW about our situation (well,,,,Ian's). Not many come around to play, but people know. That's good. Also,,,,,,Ian isn't that bothered that there aren't kids knocking down the doors to play. Our hardest part has been getting OK with OUR feelings. When we got more ok with how Ian is and that he could really care a less,,,,,,,,we got better as a family. Is there any group that your son can be a part of with kids like him? There isn't one around us,,,,,,but we joined a homeschooling group and amazingly, there are other kids with AS.....yipeeee!!!!!! Also,,,,,,,I totally get what you're saying about not having more kids. BUt, I gotta say,,,,,, when there is no one else for our son,,,,he has his brother and sisters. That is AWESOME. They are always there making him play or talk or have him show them something on the computer or on a game,,,,go for a bike ride,,,,etc. If it weren't for his siblings,,,,he'd truly have no one sometimes. Have a super day. Robindebramelamed <melamedj@...> wrote: I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 If its any consolation...when I was in school I never fit in either. I grew up in a nontraditional family-my mother was widowed and we lived with my grandmother and aunt. I think most of my family are/were aspies! I was chubby and a real geek growing up. By the time I got to high school I had blossomed a little and had my group of friends and even was a cheerleader. Was I Miss Popularity? No...but I was happy. I am still friends with that group 20 years later if that says anything. But growing up, I had very few friends and it was painful and it hurt being excluded. I think most everyone feels that at some point in time __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Broken? Wow, that kind of pisses me off. I have expressed it before but we all know that the brains of autistics experience much more activity on an MRI than an NT brain. In my opinion autistic people have super brains. There's a futuristic amount of info up there and just a regular old amount of nerves and receptors so as a result they have the problems with being overwhelmed. I think that high functioning autistics and Aspie's are sort of like the missing link between regular brains and super brains. Of course, it's just a theory but I definitely wouldn't call that broken. Amber > > I don't think I would appreciate having our kids called " broken " either. They are not broken, they have a neurological developmental disorder. A doctor said this? > > While some people do believe that thimerasol has caused autism in their kids, others do not. I don't believe that this caused autism in my kids. > > Roxanna > Autism Happens > ( ) Larry King Live > > > What is everyone's take on the Larry King Live show with McCarthy > and Halle Pete? > > I was pretty frustrated to hear the docter refer to our kids as " Broken > Children " and the other comment was from about curing her son of > Autism. Autism is a neurological disorder that is not > tecnically " curable " but is treatable. > > I was also listening to them talk about how the MMR shot, and the > immunitizations were the causes of autism. I went to the FDA website > and the MMR has NEVER contained Thimersoal. Also all other > immunitizations have phased out the thimersoal starting in 1999, and > most of them are free of mercury or never had it. > > I wanted imput from everyone here, because I feel like you will all > give me great imput on what you think. Thanks! > > Chelle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Hi Debbie -- don't apologize, like you said, we all have our highs and lows. I know I've come here on a bad day plenty of times! I've got four kids, and only my youngest has autism (which, for me, bolsters my thoughts that it's toxins that have just increased through the years), but my 12 yod has seizure disorder, and I see how it affects her life too, though she is SUCH a trouper. Anyway, it's so hard watching your child try to connect and not be able to. People really downplay the social aspects, "they'll learn, they'll get by" are things I hear often. Sure, they will, but does that make it okay? Are we supposed to overlook it? We took my son to the dentist a couple of days ago, and he attempted to play with the other kids at the toy area. One boy was playing with him, but ds had to be in charge. He was telling the other boy what to do, how, when, etc. That's typical, everywhere we go, he has to be in charge. He wants it that way at home, too, so why it would be any different elsewhere makes no sense. He wants waffles for breakfast every day (when he's not on a pancake binge) but they must be sliced, dry, then have the syrup poured over. His 'coffee' (almond chocolate milk) must be in a specific cup. Everything has a way about it, and while we try to break some habits, shake things up, we choose our battles and some things just aren't worth it. Lots of years to work on that. Donna debramelamed wrote: I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 I didn't say there was proof -- as well as there is no proof it hasn't. It is widely accepted though, not by everyone, but a lot though, and with growing numbers, that autism is caused in genetically predisposed kids by toxins, one of them being thimerasol because it is a toxin. (If mercury was safe, we could eat all the fish we wanted and go back to mercury thermometers.) It's common because most kids get vaccines. Roxanna wrote: There is no proof at all that thimerasol causes autism nor is it a "common cause" of autism. Roxanna Autism Happens ----- Original Message ----- From: Donna B To: Sent: Wednesday, October 24, 2007 4:00 PM Subject: Re: ( ) Larry King Live I agreed with Dr. Kartzinel -- my thoughts are that these kids do have some broken mechanisms in their body, things that don't work right for one way or another. But, it may be because I see my son have a ton of intestinal issues, rashes, aches, etc., that can't be explained, and many, many children on the spectrum face similar issues. Dr. Kartzinel is an amazing man, very much on our side, so I'd have a hard time feeling bad about the fact he's getting awareness out there. Honestly, personally? I don't get caught up in the semantics. My son has issues, and I don't care if he's referred to as autistic, which is the peeve I have with Holly -Peete; she can feel that way about her son, but to say that it's the wrong vernacular is misrepresentation, imo. I say my son 'is autistic' sometimes, but I don't say he is "an autistic." My daughter is epileptic, it's true, it's factual, I can't be bothered by that. It's just words. also never says she 'cured' her son. She says she recovered him. You probably heard her bus analogy -- you get hit by a bus, you'll never be cured, you'll always have aches, pains, scars, but you can recover. The thing with the MMR shot is that it's a huge dose of vaccine on a body that is still growing and the mixture can be dangerous to a child who cannot process the viral/toxic loads as bodies are supposed to. (Which explains why not every child gets autism after having vaccines. Most children can process the loads fine, but toxins increase, the number of children who can't process the increased toxins is growing at a scary epidemic rate.) Be careful to just research the FDA and government sites. It makes sense that they aren't going to show the side-effects, unless they are in small print and hard to find. And a 'trace' of thimerasol can still be WAY more than a tiny body can process per pound. And last -- Thimerasol was 'recommended' to be phased out in 1999, but because it preserves vaccines for years, those vaccines that weren't yet used stayed on the shelf for years later because they weren't yet expired, so while new ones weren't made, those ones with thimerasol still remained. Thimerasol/vaccines aren't the sole reason for autism, they are just one of the most common ones -- pesticides, medications, etc., there's a lot of toxins out there contributing to it all. Hope that helps! Donna wrote: What is everyone's take on the Larry King Live show with McCarthy and Halle Pete? I was pretty frustrated to hear the docter refer to our kids as "Broken Children" and the other comment was from about curing her son of Autism. Autism is a neurological disorder that is not tecnically "curable" but is treatable. I was also listening to them talk about how the MMR shot, and the immunitizations were the causes of autism. I went to the FDA website and the MMR has NEVER contained Thimersoal. Also all other immunitizations have phased out the thimersoal starting in 1999, and most of them are free of mercury or never had it. I wanted imput from everyone here, because I feel like you will all give me great imput on what you think. Thanks! Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Just to clarify -- I didn't say you caved -- I said "I caved," specifically because I gave my kid a vaccine that a doctor made me feel bad for doing something I didn't think was right. I know we're not all going to agree on this, and that's okay. (People didn't agree with Columbus when he said the world was round, so I can deal LOL) I just expect everyone to understand that it is okay to have other thoughts on it, to look in other directions, and try new things. Even the medical establishment wouldn't be anywhere today if new things weren't tried. I've always wondered, if ABA is proven, why isn't it covered by insurance? I totally believe in its necessity, but even it's not called 'proven.' Roxanna wrote: I don't think coming up with new vaccines removes our rights as parents. I think we owe a lot to vaccines in helping cure/solve a lot of illnesses. I also don't think I have caved because I have had my kids given their immunizations. If a doctor makes anyone feel that way, maybe they should get a different doc. I know I would! Roxanna Autism Happens ----- Original Message ----- From: Donna B To: Sent: Thursday, October 25, 2007 3:17 PM Subject: Re: ( ) Re: Larry King Live Texas tried to make it mandatory, but it was changed -- not enough research and it was taking the choice out of the parents' hands. Every vaccine, new or not, removes a bit more of our rights -- the medical establishment is not perfect. (Think thalidomide.) I don't want my children ever being someone's guinea pigs or hurt because I caved when a doctor made me feel bad for doing what I think is right. They are my kids, so stand back lol Rose wrote: Deb, <<<the new one for young girls>>>. are you speaking of the vaccine that's new, that's suppose to prevent ovarian cancer? I heard on the news that some states made it mandatory for girls to have this, and some schools are giving them out "in school". I don't know which states. debmetsfanaol wrote: 's pediatrician wants to give her the meningitis vaccine and the new one for young girls. Should I be concerned at all? Deb In a message dated 10/24/2007 10:34:49 P.M. Eastern Daylight Time, mrathswohldaylemc (DOT) org writes: I guess part of my problem with Dr. Kartzinel is just that I don't really see my son as broken, but different. I did listen to the clip again and she did say recovered, so I have to back away from that issue there. My only reason for saying anything about the MMR is that I keep hearing people blame the mercury in the MMR for their kids being autistic, and the MMR does not contain any. I do think that we need to have research on the issue of the viral load and overloading our kids immune systems. That just seems to be a far more likely cause, and if that is the cause I belive that we need to spread out the immunitizations better so they are not getting so much at one. Thanks for the feedback. > > I agreed with Dr. Kartzinel -- my thoughts are that these kids do have > some broken mechanisms in their body, things that don't work right for > one way or another. But, it may be because I see my son have a ton of > intestinal issues, rashes, aches, etc., that can't be explained, and > many, many children on the spectrum face similar issues. Dr. Kartzinel > is an amazing man, very much on our side, so I'd have a hard time > feeling bad about the fact he's getting awareness out there. Honestly, > personally? I don't get caught up in the semantics. My son has issues, > and I don't care if he's referred to as autistic, which is the peeve I > have with Holly -Peete; she can feel that way about her son, but > to say that it's the wrong vernacular is misrepresentation, imo. I say > my son 'is autistic' sometimes, but I don't say he is "an autistic." My > daughter is epileptic, it's true, it's factual, I can't be bothered by > that. It's just words. > > also never says she 'cured' her son. She says she recovered him. > You probably heard her bus analogy -- you get hit by a bus, you'll never > be cured, you'll always have aches, pains, scars, but you can recover. > > The thing with the MMR shot is that it's a huge dose of vaccine on a > body that is still growing and the mixture can be dangerous to a child > who cannot process the viral/toxic loads as bodies are supposed to. > (Which explains why not every child gets autism after having vaccines. > Most children can process the loads fine, but toxins increase, the > number of children who can't process the increased toxins is growing at > a scary epidemic rate.) > > Be careful to just research the FDA and government sites. It makes sense > that they aren't going to show the side-effects, unless they are in > small print and hard to find. And a 'trace' of thimerasol can still be > WAY more than a tiny body can process per pound. > > And last -- Thimerasol was 'recommended' to be phased out in 1999, but > because it preserves vaccines for years, those vaccines that weren't yet > used stayed on the shelf for years later because they weren't yet > expired, so while new ones weren't made, those ones with thimerasol > still remained. > > Thimerasol/vaccines aren't the sole reason for autism, they are just one > of the most common ones -- pesticides, medications, etc., there's a lot > of toxins out there contributing to it all. > > Hope that helps! > Donna > Debbie Salerno Maine Coon Rescue Board Member DNA Manager Eastern Regional Director Vice President www.mainecoonrescue.net See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Hi Robin, You are right about the siblings. I have a 4 yr old daughter who is not on the spectrum but is reading difficult books and doing addition and subtraction problems, she is very emotionally astute. I suspect she is gifted and almost at the skill level of my 2nd grade AS boy. She is very good for him socially and keeps him on his toes so he keeps trying things. I think that the hard part for me is that my son does want to play with the kids often but just doesn't know how to be successful because it just doesn't come naturally to him. It is interesting to watch NT kids and see how they just play! It is a really hard thing to teach. We will keep plugging along with social skill groups etc Thanks so much, Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 My kids that were born after it came out got the vaccine, too -- my first two had the pox so bad, it was miserable to even watch the poor things. High, high longterm fevers, pox everywhere, scars... I'm not anti-vaccine by any means..I just want safe vaccines and a safe schedule. Roxanna wrote: All my kids except the first one got the chicken pox vaccine. Roxanna Autism Happens ----- Original Message ----- From: and/or Robin Lemke To: Sent: Friday, October 26, 2007 8:20 AM Subject: Re: ( ) Re: Larry King Live Isn't that awful? I had it in 1990. I should get my recds out and see. Ick. I really don't think I'm gonna have my 9 yr old get it. Just doesn't make sense to me. Maybe as an older teen? 4 out of 70 types being "protected" doesn't sound good enough for me. Especially if you're getting it through sex. I fought the Chicken Pox one, too. Held out for them to actually CATCH it,,,,,but no one seems to get it anymore. So,,,,,my youngest 2 had to get the shot. I hate this. I understand that some really do make sense,,,,,,,but there are some that we just seem to do because we "should". Oh well. Robin ASC <aschristensencharter (DOT) net> wrote: When I was first diagnosed in 1999 they never ever said HPV. It wasn't until 2005 that they told me all the problems were caused by HPV, I also got a copy of my med record from 1999, and you know what it was there PLAIN as day that I had HPV based on the HPV dna test done during my pap. and/or Robin Lemke wrote: > Thanks. > I'm gonna google the gardisil. > Wierd,,,,,I had Cerv canc.....but never heard the word HPV. I'm > sitting here wondering why I never knew there was a "sex cerv cancer" > and just a "cerv cance". > wow. > Robin > > */Donna B <donnabzygmail>/* wrote: > > It "helps" prevents something like 4 types of HPV, when there are > many, many more...or 4% of HPV...can't remember which, quite > honestly, but in my head, neither is convincing enough to get the > shot. HPV doesn't mean you will get cervical cancer anyway, it > just means you may. > > and/or Robin Lemke wrote: >> So,,,,is the vaccine ONLY helping to prevent cerv cancer that you >> get from having sex? >> And NOT cerv cancer that you just GET? >> Robin >> >> */ Elgamal <cindyelgamalsbcglobal (DOT) net>/* wrote: >> >> The vaccine is for the HPV virus which can cause cervical cancer. >> ---------------------------------------------------------- >> *From:* >> [mailto: ] *On Behalf Of *Rose >> *Sent:* Thursday, October 25, 2007 7:47 AM >> *To:* >> *Subject:* [sPAM] Re: ( ) Re: Larry King Live >> Deb, >> <<<the new one for young girls>>>. are you speaking of the >> vaccine that's new, that's suppose to prevent ovarian >> cancer? I heard on the news that some states made it >> mandatory for girls to have this, and some schools are giving >> them out "in school". I don't know which states. >> >> */debmetsfanaol/* wrote: >> >> 's pediatrician wants to give her the meningitis >> vaccine and the new one for young girls. Should I be >> concerned at all? >> Deb >> In a message dated 10/24/2007 10:34:49 P.M. Eastern >> Daylight Time, mrathswohldaylemc (DOT) org writes: >> >> I guess part of my problem with Dr. Kartzinel is just >> that I don't >> really see my son as broken, but different. I did >> listen to the clip >> again and she did say recovered, so I have to back >> away from that >> issue there. My only reason for saying anything about >> the MMR is that >> I keep hearing people blame the mercury in the MMR >> for their kids >> being autistic, and the MMR does not contain any. I >> do think that we >> need to have research on the issue of the viral load >> and overloading >> our kids immune systems. That just seems to be a far >> more likely >> cause, and if that is the cause I belive that we need >> to spread out >> the immunitizations better so they are not getting so >> much at one. >> Thanks for the feedback. >> >> >> >> > >> > I agreed with Dr. Kartzinel -- my thoughts are that >> these kids do >> have >> > some broken mechanisms in their body, things that >> don't work right >> for >> > one way or another. But, it may be because I see my >> son have a ton >> of >> > intestinal issues, rashes, aches, etc., that can't >> be explained, >> and >> > many, many children on the spectrum face similar >> issues. Dr. >> Kartzinel >> > is an amazing man, very much on our side, so I'd >> have a hard time >> > feeling bad about the fact he's getting awareness >> out there. >> Honestly, >> > personally? I don't get caught up in the semantics. >> My son has >> issues, >> > and I don't care if he's referred to as autistic, >> which is the >> peeve I >> > have with Holly -Peete; she can feel that >> way about her >> son, but >> > to say that it's the wrong vernacular is >> misrepresentation, imo. I >> say >> > my son 'is autistic' sometimes, but I don't say he >> is "an >> autistic." My >> > daughter is epileptic, it's true, it's factual, I >> can't be bothered >> by >> > that. It's just words. >> > >> > also never says she 'cured' her son. She says >> she recovered >> him. >> > You probably heard her bus analogy -- you get hit by >> a bus, you'll >> never >> > be cured, you'll always have aches, pains, scars, >> but you can >> recover. >> > >> > The thing with the MMR shot is that it's a huge dose >> of vaccine on >> a >> > body that is still growing and the mixture can be >> dangerous to a >> child >> > who cannot process the viral/toxic loads as bodies >> are supposed to. >> > (Which explains why not every child gets autism >> after having >> vaccines. >> > Most children can process the loads fine, but toxins >> increase, the >> > number of children who can't process the increased >> toxins is >> growing at >> > a scary epidemic rate.) >> > >> > Be careful to just research the FDA and government >> sites. It makes >> sense >> > that they aren't going to show the side-effects, >> unless they are in >> > small print and hard to find. And a 'trace' of >> thimerasol can still >> be >> > WAY more than a tiny body can process per pound. >> > >> > And last -- Thimerasol was 'recommended' to be >> phased out in 1999, >> but >> > because it preserves vaccines for years, those >> vaccines that >> weren't yet >> > used stayed on the shelf for years later because >> they weren't yet >> > expired, so while new ones weren't made, those ones >> with thimerasol >> > still remained. >> > >> > Thimerasol/vaccines aren't the sole reason for >> autism, they are >> just one >> > of the most common ones -- pesticides, medications, >> etc., there's a >> lot >> > of toxins out there contributing to it all. >> > >> > Hope that helps! >> > Donna >> > >> >> Debbie Salerno >> Maine Coon Rescue >> Board Member >> DNA Manager >> Eastern Regional Director >> Vice President >> www.mainecoonrescue.net >> >> >> ---------------------------------------------------------- >> See what's new at AOL.com >> <http://www.aol.com/?NCID=AOLCMP00300000001170> and Make >> AOL Your Homepage >> <http://www.aol.com/mksplash.adp?NCID=AOLCMP00300000001169>. >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? "You're a high-maintenance dude!" We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say "That's because I'm high-maintenance!" A couple of times now, if he sees others having a bad day, he'll say "They must be high-maintenance, too." It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ----- Original Message ----- From: debramelamed To: Sent: Thursday, October 25, 2007 9:38 PM Subject: ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 If it helps, I'd listen to the replay of Dr. Kartzinel -- hearing it third and fourth-hand, it's out of context. He's referring to parts of our kids, not saying "your child is broken -- fix him!!" Big difference, but you gotta hear the whole thing to get his meaning. He is a huge, huge supporter for our kids, and he has played a huge part in autism awareness, cooperative doctors, etc. Amber wrote: Broken? Wow, that kind of pisses me off. I have expressed it before but we all know that the brains of autistics experience much more activity on an MRI than an NT brain. In my opinion autistic people have super brains. There's a futuristic amount of info up there and just a regular old amount of nerves and receptors so as a result they have the problems with being overwhelmed. I think that high functioning autistics and Aspie's are sort of like the missing link between regular brains and super brains. Of course, it's just a theory but I definitely wouldn't call that broken. Amber > > I don't think I would appreciate having our kids called "broken" either. They are not broken, they have a neurological developmental disorder. A doctor said this? > > While some people do believe that thimerasol has caused autism in their kids, others do not. I don't believe that this caused autism in my kids. > > Roxanna > Autism Happens > ( ) Larry King Live > > > What is everyone's take on the Larry King Live show with McCarthy > and Halle Pete? > > I was pretty frustrated to hear the docter refer to our kids as "Broken > Children" and the other comment was from about curing her son of > Autism. Autism is a neurological disorder that is not > tecnically "curable" but is treatable. > > I was also listening to them talk about how the MMR shot, and the > immunitizations were the causes of autism. I went to the FDA website > and the MMR has NEVER contained Thimersoal. Also all other > immunitizations have phased out the thimersoal starting in 1999, and > most of them are free of mercury or never had it. > > I wanted imput from everyone here, because I feel like you will all > give me great imput on what you think. Thanks! > > Chelle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 I know you have a 4 year old daughter; we have a 4 year old son, so perhaps a lot different, but is your daughter 'angry' or anything in play with the sibling that has AS? Our 4 year old not on the spectrum IS, and vents it well, but also takes it out on his brother and us sometimes; he gets frustrated with all of it; and, it is NOT because of attention (he gets more than anyone else because he STILL IS THE BABY of the family---and fits that definition).....Just curious. We are always worried about how he will be affected by having two special needs brothers. Our 4 year old wants to be a surgeon and a construction worker, and has wanted to be both since he was barely two years old. The construction worker is FOR FUN, mind you! So, we shall see. But we do 'play in to it' just like we would any other child or whatever; so he has pictures of the inside of an eyeball (that grosses ME out) on his wall, skeletons, books about human bodies, etc. And, once you tell him, he knows it and talks about it from time-to-time. Our biggest concern is that he is a mini-adult in a four year old's body; he is a caretaker, no matter how we try to have him NOT be; and he does LOVE / HATE his brothers, and always keeps them safe from harm; explains things they don't get and he is ONLY four. Sometimes he is the reason we can all keep going, as he is the bright spot in the day. Would love to hear back about your thoughts Debbie, and others about your 'normal' kiddos (if there is such a thing----). Ruthie ( ) Re: Larry King Live Hi Robin,You are right about the siblings. I have a 4 yr old daughter who is not on the spectrum but is reading difficult books and doing addition and subtraction problems, she is very emotionally astute. I suspect she is gifted and almost at the skill level of my 2nd grade AS boy. She is very good for him socially and keeps him on his toes so he keeps trying things. I think that the hard part for me is that my son does want to play with the kids often but just doesn't know how to be successful because it just doesn't come naturally to him. It is interesting to watch NT kids and see how they just play! It is a really hard thing to teach. We will keep plugging along with social skill groups etcThanks so much,Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzy@...> wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? " You're a high-maintenance dude! " We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say " That's because I'm high-maintenance! " A couple of times now, if he sees others having a bad day, he'll say " They must be high-maintenance, too. " It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 I never thought of it that way -- too late now, I guess, lol...but I figure he's going to want to know at some point why he has therapists, aides, etc., and I'd rather have him understand, and punctuate it with 'but that's no excuse to not do your best...' kind of thing. My little guy's extremely smart and has already questioned me on why he has to go to OT and other places. "Oh, because I'm high-maintenance!" and he smiles. Heidi Guarino wrote: Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzygmail> wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? "You're a high-maintenance dude!" We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say "That's because I'm high-maintenance!" A couple of times now, if he sees others having a bad day, he'll say "They must be high-maintenance, too." It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ----- Original Message ----- From: debramelamed To: Sent: Thursday, October 25, 2007 9:38 PM Subject: ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Wow....we've never really been told what to do,,,,,but try to look at it kind of like how we deal with telling our adopted daughter that she is adopted. It's been a part of all of our vocabularies since day 1. AS and ADHD and Tourettes and adoption. No one blinks twice when the words come up. It's simply a part of our family. I didn't want any of our kids to one day say, "What? What's that?" and wonder why they weren't told. Who knows. I think it's a very personal thing. I do think that no matter what your child "has".....it's gonna be a natural thing to try to "use it" at some point. When Ian has brought up AS and has tried to use it,,,,,,we've laughed it off and said, "good try". RobinHeidi Guarino <heidi.guarino@...> wrote: Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzygmail> wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? "You're a high-maintenance dude!" We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say "That's because I'm high-maintenance!" A couple of times now, if he sees others having a bad day, he'll say "They must be high-maintenance, too." It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 the advice came from my son's tutor who said she works with a 12 year old who claims he can't learn to read " becasue he's autistic. " Our hope is to have Owen in a good place emotionally and socially by the time he's old enough to notice and never have to make a big deal out of this to him. could be this is part our problem and our unwillingness to accept that this is a " forever " thing. I don't know... all I know is that I don't want my son to ever think there's something wrong with him, or try to use it as an excuse to get out of achieving at his fullest potential. Do folks think I'm crazy? I've only been on this group for a couple of days and I feel like I've learned a lot from all of you... I think I hadn't realized just how much I';vebeen in denial about this and how much it would help to have someone to talk to. On 10/26/07, and/or Robin Lemke <jrisjs@...> wrote: Wow....we've never really been told what to do,,,,,but try to look at it kind of like how we deal with telling our adopted daughter that she is adopted. It's been a part of all of our vocabularies since day 1. AS and ADHD and Tourettes and adoption. No one blinks twice when the words come up. It's simply a part of our family. I didn't want any of our kids to one day say, " What? What's that? " and wonder why they weren't told. Who knows. I think it's a very personal thing. I do think that no matter what your child " has " .....it's gonna be a natural thing to try to " use it " at some point. When Ian has brought up AS and has tried to use it,,,,,,we've laughed it off and said, " good try " . Robin Heidi Guarino <heidi.guarino@...> wrote: Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzy@...> wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? " You're a high-maintenance dude! " We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say " That's because I'm high-maintenance! " A couple of times now, if he sees others having a bad day, he'll say " They must be high-maintenance, too. " It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Crazy? No way -- we all know our own kids the best, and we have to make individual choices based on that. You'll find that on this list, we often have different approaches but there's respect for that, so even if someone did think you were crazy (which I doubt anyone would lol) who cares. Do what's right for your son, and you know best what that is. And denial is a tough thing. I think everyone goes through a certain phase of it. My husband had it bad, like a lot of dads do. Me, I jumped in with both feet to get help, but I think part of me hoped throughout the last almost 3 years that there was a mistake with his dx -- I know there's something going on there, so I've did the 'well, maybe...' a few times, but that just means that when he's having a bad day, my stomach goes bam, and I think " he really DOES have autism." It's so clear, but as a parent, I think we still have those moments of sadness/denial about it. Heidi Guarino wrote: the advice came from my son's tutor who said she works with a 12 year old who claims he can't learn to read "becasue he's autistic." Our hope is to have Owen in a good place emotionally and socially by the time he's old enough to notice and never have to make a big deal out of this to him. could be this is part our problem and our unwillingness to accept that this is a "forever" thing. I don't know... all I know is that I don't want my son to ever think there's something wrong with him, or try to use it as an excuse to get out of achieving at his fullest potential. Do folks think I'm crazy? I've only been on this group for a couple of days and I feel like I've learned a lot from all of you... I think I hadn't realized just how much I';vebeen in denial about this and how much it would help to have someone to talk to. On 10/26/07, and/or Robin Lemke <jrisjs > wrote: Wow....we've never really been told what to do,,,,,but try to look at it kind of like how we deal with telling our adopted daughter that she is adopted. It's been a part of all of our vocabularies since day 1. AS and ADHD and Tourettes and adoption. No one blinks twice when the words come up. It's simply a part of our family. I didn't want any of our kids to one day say, "What? What's that?" and wonder why they weren't told. Who knows. I think it's a very personal thing. I do think that no matter what your child "has".....it's gonna be a natural thing to try to "use it" at some point. When Ian has brought up AS and has tried to use it,,,,,,we've laughed it off and said, "good try". Robin Heidi Guarino <heidi.guarinogmail> wrote: Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzygmail> wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? "You're a high-maintenance dude!" We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say "That's because I'm high-maintenance!" A couple of times now, if he sees others having a bad day, he'll say "They must be high-maintenance, too." It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ----- Original Message ----- From: debramelamed To: Sent: Thursday, October 25, 2007 9:38 PM Subject: ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now. Debbie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 You don't have to prove there isn't, you have to prove there is. But you said it was a common cause of autism and it's not proven that it is even "A" cause of autism, let alone the common cause. Even if people feel like a vaccine caused autism, it doesn't mean it's any more true. I don't think it is widely accepted either. There is just a certain segment of people who do and like to push their theories. I personally get upset that people want to hyper focus on this one thing and not look around at other possible causes. I think it will slow down the search for answers. It's fine to consider this option, IMO, but not at the expense of any other. RoxannaAutism Happens Re: ( ) Larry King Live I agreed with Dr. Kartzinel -- my thoughts are that these kids do have some broken mechanisms in their body, things that don't work right for one way or another. But, it may be because I see my son have a ton of intestinal issues, rashes, aches, etc., that can't be explained, and many, many children on the spectrum face similar issues. Dr. Kartzinel is an amazing man, very much on our side, so I'd have a hard time feeling bad about the fact he's getting awareness out there. Honestly, personally? I don't get caught up in the semantics. My son has issues, and I don't care if he's referred to as autistic, which is the peeve I have with Holly -Peete; she can feel that way about her son, but to say that it's the wrong vernacular is misrepresentation, imo. I say my son 'is autistic' sometimes, but I don't say he is "an autistic." My daughter is epileptic, it's true, it's factual, I can't be bothered by that. It's just words. also never says she 'cured' her son. She says she recovered him. You probably heard her bus analogy -- you get hit by a bus, you'll never be cured, you'll always have aches, pains, scars, but you can recover. The thing with the MMR shot is that it's a huge dose of vaccine on a body that is still growing and the mixture can be dangerous to a child who cannot process the viral/toxic loads as bodies are supposed to. (Which explains why not every child gets autism after having vaccines. Most children can process the loads fine, but toxins increase, the number of children who can't process the increased toxins is growing at a scary epidemic rate.)Be careful to just research the FDA and government sites. It makes sense that they aren't going to show the side-effects, unless they are in small print and hard to find. And a 'trace' of thimerasol can still be WAY more than a tiny body can process per pound. And last -- Thimerasol was 'recommended' to be phased out in 1999, but because it preserves vaccines for years, those vaccines that weren't yet used stayed on the shelf for years later because they weren't yet expired, so while new ones weren't made, those ones with thimerasol still remained.Thimerasol/vaccines aren't the sole reason for autism, they are just one of the most common ones -- pesticides, medications, etc., there's a lot of toxins out there contributing to it all. Hope that helps!Donna wrote: What is everyone's take on the Larry King Live show with McCarthy and Halle Pete? I was pretty frustrated to hear the docter refer to our kids as "Broken Children" and the other comment was from about curing her son of Autism. Autism is a neurological disorder that is not tecnically "curable" but is treatable. I was also listening to them talk about how the MMR shot, and the immunitizations were the causes of autism. I went to the FDA website and the MMR has NEVER contained Thimersoal. Also all other immunitizations have phased out the thimersoal starting in 1999, and most of them are free of mercury or never had it. I wanted imput from everyone here, because I feel like you will all give me great imput on what you think. Thanks! Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 How do you get past that? I think I feel it every day. Whenever he has a good day I'm certain this is all behind us. Then, he'll have a tantrum or insist on talking like Curious , refuse to get dressed, or talk endlessly about the same thing for hours and I'll realize that I'm just kidding myself. We are doin everything in our power to help him -- we've pulled every string we have to get him a tutor on weekends, and to place him in a full-day integrated preschool program focused on social interactions. He's getting speech and occupational therapy twice a week, and I swear somedays it really seems like lights are being turned on in his head. But then there are other days that make me just want to cry. I think as a parent I've become accustomed to being able to " fix " things. I can put a band-aid on a scraped knee, put batteries in toys when they die, give medicine to my kids when they're sick. I can take them places, buy them things, sing them to sleep, make them giggle when they're sad and calm them down when they're going crazy. But THIS.... I can't fix this and it's really, really hard for me to accept that. You should all know that I'm being more honest on this listserve than I've been with anyone... including my husband. Damn, that's really sad. On 10/26/07, Donna B <donnabzy@...> wrote: Crazy? No way -- we all know our own kids the best, and we have to make individual choices based on that. You'll find that on this list, we often have different approaches but there's respect for that, so even if someone did think you were crazy (which I doubt anyone would lol) who cares. Do what's right for your son, and you know best what that is. And denial is a tough thing. I think everyone goes through a certain phase of it. My husband had it bad, like a lot of dads do. Me, I jumped in with both feet to get help, but I think part of me hoped throughout the last almost 3 years that there was a mistake with his dx -- I know there's something going on there, so I've did the 'well, maybe...' a few times, but that just means that when he's having a bad day, my stomach goes bam, and I think " he really DOES have autism. " It's so clear, but as a parent, I think we still have those moments of sadness/denial about it. Heidi Guarino wrote: the advice came from my son's tutor who said she works with a 12 year old who claims he can't learn to read " becasue he's autistic. " Our hope is to have Owen in a good place emotionally and socially by the time he's old enough to notice and never have to make a big deal out of this to him. could be this is part our problem and our unwillingness to accept that this is a " forever " thing. I don't know... all I know is that I don't want my son to ever think there's something wrong with him, or try to use it as an excuse to get out of achieving at his fullest potential. Do folks think I'm crazy? I've only been on this group for a couple of days and I feel like I've learned a lot from all of you... I think I hadn't realized just how much I';vebeen in denial about this and how much it would help to have someone to talk to. On 10/26/07, and/or Robin Lemke <jrisjs@... > wrote: Wow....we've never really been told what to do,,,,,but try to look at it kind of like how we deal with telling our adopted daughter that she is adopted. It's been a part of all of our vocabularies since day 1. AS and ADHD and Tourettes and adoption. No one blinks twice when the words come up. It's simply a part of our family. I didn't want any of our kids to one day say, " What? What's that? " and wonder why they weren't told. Who knows. I think it's a very personal thing. I do think that no matter what your child " has " .....it's gonna be a natural thing to try to " use it " at some point. When Ian has brought up AS and has tried to use it,,,,,,we've laughed it off and said, " good try " . Robin Heidi Guarino <heidi.guarino@...> wrote: Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzy@...> wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? " You're a high-maintenance dude! " We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say " That's because I'm high-maintenance! " A couple of times now, if he sees others having a bad day, he'll say " They must be high-maintenance, too. " It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Heidi, For us it was best that we told our son about his dx. we told him towards the end of 2nd grade. the school said, when the kids don't know about the dx they always ask, why am I being pulled from class, that also explains all the dr visits, tutoring, therapy etc... After I spoke with specialist about, if I should tell my son he has autism. they all recommended I do tell him. I have never heard any professional say, including someone at the school who I disagree with lots, say, not to tell him. they all told me it was the best thing to let him know about his dx and explain (age approprate) what it is. Our therapist also told my son and explained what the dx means. when my son was older, I asked him if he was OK with me telling him about his autism or would he prefer I didn't tell him. He told me he was glad I the doctors & therapist told him and explained what autism was. then he said, now I can help others who have it. He never uses it as an excuse. but when he needed lots of tutoring with reading, writing, & spelling - He asked if it was related to autism. Which in my son's situation it was related, due to him being a late talker (3 1/2) its all language related. So, he said he's not giving up, never complained about giving up playing to go to tutoring. his last state test said he was grade level. It did take 2 years to catch up. He learns slow and different. I and my son do believe its best to let the person know of their DX.Heidi Guarino <heidi.guarino@...> wrote: Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzygmail> wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? "You're a high-maintenance dude!" We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say "That's because I'm high-maintenance!" A couple of times now, if he sees others having a bad day, he'll say "They must be high-maintenance, too." It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Heidi- You just described how I feel exactly. You are not alone! Kirsten (Mom of 8 yr. old daughter Aspie) Re: ( ) Re: Larry King Live How do you get past that? I think I feel it every day. Whenever he has a good day I'm certain this is all behind us. Then, he'll have a tantrum or insist on talking like Curious , refuse to get dressed, or talk endlessly about the same thing for hours and I'll realize that I'm just kidding myself. We are doin everything in our power to help him -- we've pulled every string we have to get him a tutor on weekends, and to place him in a full-day integrated preschool program focused on social interactions. He's getting speech and occupational therapy twice a week, and I swear somedays it really seems like lights are being turned on in his head. But then there are other days that make me just want to cry. I think as a parent I've become accustomed to being able to " fix " things. I can put a band-aid on a scraped knee, put batteries in toys when they die, give medicine to my kids when they're sick. I can take them places, buy them things, sing them to sleep, make them giggle when they're sad and calm them down when they're going crazy. But THIS.... I can't fix this and it's really, really hard for me to accept that. You should all know that I'm being more honest on this listserve than I've been with anyone... including my husband. Damn, that's really sad. On 10/26/07, Donna B <donnabzy@... <mailto:donnabzy@...> > wrote: Crazy? No way -- we all know our own kids the best, and we have to make individual choices based on that. You'll find that on this list, we often have different approaches but there's respect for that, so even if someone did think you were crazy (which I doubt anyone would lol) who cares. Do what's right for your son, and you know best what that is. And denial is a tough thing. I think everyone goes through a certain phase of it. My husband had it bad, like a lot of dads do. Me, I jumped in with both feet to get help, but I think part of me hoped throughout the last almost 3 years that there was a mistake with his dx -- I know there's something going on there, so I've did the 'well, maybe...' a few times, but that just means that when he's having a bad day, my stomach goes bam, and I think " he really DOES have autism. " It's so clear, but as a parent, I think we still have those moments of sadness/denial about it. Heidi Guarino wrote: the advice came from my son's tutor who said she works with a 12 year old who claims he can't learn to read " becasue he's autistic. " Our hope is to have Owen in a good place emotionally and socially by the time he's old enough to notice and never have to make a big deal out of this to him. could be this is part our problem and our unwillingness to accept that this is a " forever " thing. I don't know... all I know is that I don't want my son to ever think there's something wrong with him, or try to use it as an excuse to get out of achieving at his fullest potential. Do folks think I'm crazy? I've only been on this group for a couple of days and I feel like I've learned a lot from all of you... I think I hadn't realized just how much I';vebeen in denial about this and how much it would help to have someone to talk to. On 10/26/07, and/or Robin Lemke <jrisjs@... <mailto:jrisjs@...> > wrote: Wow....we've never really been told what to do,,,,,but try to look at it kind of like how we deal with telling our adopted daughter that she is adopted. It's been a part of all of our vocabularies since day 1. AS and ADHD and Tourettes and adoption. No one blinks twice when the words come up. It's simply a part of our family. I didn't want any of our kids to one day say, " What? What's that? " and wonder why they weren't told. Who knows. I think it's a very personal thing. I do think that no matter what your child " has " .....it's gonna be a natural thing to try to " use it " at some point. When Ian has brought up AS and has tried to use it,,,,,,we've laughed it off and said, " good try " . Robin Heidi Guarino <heidi.guarino@... <mailto:heidi.guarino@...> > wrote: Donna, We were told the opposite -- to never, ever tell our 4-year-old son that he's been diagnosed with anything. That if we told him, someday down the line he woudl learn that he could use it as a crutch. On 10/26/07, Donna B <donnabzy@... <mailto:donnabzy@...> > wrote: A behavioral therapist told us about 2 years ago that we should tell our son he's different, so when others start noticing it and treating him differently, he'd have a reason why, and it wouldn't be as hurtful. Our way? " You're a high-maintenance dude! " We say it with a smile and a laugh, and if he's having a bad day, we joke about how he's being even more high-maintenance. Now, he'll say " That's because I'm high-maintenance! " A couple of times now, if he sees others having a bad day, he'll say " They must be high-maintenance, too. " It's helped his understanding of others because he can relate. Not a cure-all, but it's definitely helped! Toni wrote: If your family members are telling you not to come around.. I wouldn't . They are missing a blessing. They are closed minded, they are pitiful (sorry). I understand your hurt. I hate to see my kids with other kids because that is when it is so obvious they are different. But, you know what, Debbie, it doesn't bother my kids to be different, they are proud.. they don't want to be pedestrian (their words) and boring and mundane.. to them we are the weird ones who ask about somebody's day and don't really care if they answer or not.. it's a nicety... CHIN up girl, I bet it doesn't bother your son (or mine) as nearly as their treatment bothers us.By the way, my boys are 19 and they do get it, they just don't care. They said the kids at school all drank, smoked, did drugs, had sex etc and that they and one other boy were the only virgins and they didn't WANT to be like the rest of the kids. Try to concentrate on HIS positives just for today and you'll feel better... My pdoc told me when I first started talking to him about the boys... Look at every picture you see of Einstein, his hair is all over his head, he had a 'keeper', his clothes were unkempt, and yet he was brilliant and made a difference. Your boys will find their niche and make a difference too... I understand feeling low... I have felt like I was on a treadmill getting nowhere fast..sat in my room and cried... but it will get better... Toni ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now. Debbie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 I like your idea! Many people ARE high maintenance! lol RoxannaAutism Happens ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 I disagree! I think my ds's like knowing what is going with them. I know if it were me, I would like to know. Understanding is half the battle, IMO. It also leads to self-advocacy. Using it as a crutch will only happen if you let him. Besides, I think kids will fill in the blanks if you don't give them the correct information. RoxannaAutism Happens ( ) Re: Larry King Live I don't think I can agree with that statement. I know we all have our quirks and weaknesses, but my child cannot connect with his peers. How it must be to feel like an outsider amongst your peers I cannot imagine. That is why my heart breaks, that is why I personally would not have another child. I can't take the pain of seeing my son try to connect and get frustrated and anxious and then aggressive because he is hurt and angry that he can't be successful with connecting to other kids. He doesn't even know why he can't connect because he is 7 and he doesn't get it yet. There are no play dates, no friends, even my family members are telling us not to come around. It is so hard. Sorry if I am negative but I guess we all have our highs and lows and I am low right now.Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 On Jun 25, 12:28am, " Heidi Guarino " wrote: } the advice came from my son's tutor who said she works with a 12 year old } who claims he can't learn to read " becasue he's autistic. " Our hope is to } have Owen in a good place emotionally and socially by the time he's old } enough to notice and never have to make a big deal out of this to him. That seems like really normal kid behavior to me. I mean, how many adopted kids will someday yell at their parents " you don't really love me because I'm not your real child " ? Doesn't mean they shouldn't know. Secrets tend to be really hard on a family. Bam pretty much figured it out by himself, and we followed up by talking about it when he seems to want to talk about it and by providing him with what good children's books we've been able to find. So far no problems with excuses, though I'm sure that will come with puberty. :-) Willa Quote Link to comment Share on other sites More sharing options...
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