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Messages By: brandia
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December 15, 2007, 6:00 pm PST
 Quote From: yarncrazy Having an adult daughter with Asperger's is difficult. Many psych docs do not believe Asperger's exists. They also don't believe it can be found in adults. Well, it can. I also have Asperger's and I am 56 years old. No wonder I was the "odd one"! Now, my daughter struggles with a world that does not accept autism. After all, autistic people sit on the floor and rock or bang their heads against the wall. I think autism is genetic. What I find difficult is all of a sudden 1 out of 150 children are autistic. If 1 out of 150 children are being found to be autistic today, what about all the children who are autistic and never diagnosed? And, how will our nation accept these children when they become adults. My daughter is loving, giving, a nurturer. Can she get a job? No. I do not want her to lie and say she doesn't have Asperger's but when she tells them, she is turned down for the job. Her greatest challenge area is communication. It always has been. When she worked at our local cinema, she was fired because she misinterpreted what her supervisor wanted her to do. That was in January 2006. She still hasn't found work. She has been declared disabled and receives assistance but we supplement her income. She lives at home. I worry about the future. We have no family to assist her and she doesn't qualify for adult services. So what happens to her when my husband and I are gone? A researcher made the comment recently that "we know that you don't adjust your underwear in public. People with autism don't think that way." How true! It's that little bit that's missing - that little bit that ruins their lives. Meltdowns? She still has them. Meds? Yes, she takes them. What she takes helps take the "edge off". So . . . what do we do with our children when they become adults? Can they marry? Can they have children? Can they hold jobs? I don't have any answers and I need to know. I want my daughter to be self-sufficient. She isn't quite there yet. She may never be. She will always need a little help as a reminder or a push. Who's going to give it when I'm gone?? I also was very concerned when I read the title & lead-in... I have Aspergers also & I am hoping that that part of the Autism spectrum is also covered. It's very hard for me to tell people I have autism. When I do they just look at me like "Duh" I have to explain that there's different levels & spectrums of the disorder & that NO I'm not the rainman I don't have to get my underwaer on thursday from K-Mart but I do have some idiosyncrasies that result from this. Autism is a genetic disease, it runs rampant through our family. I am just learning about a diagnosis that was made on me over 38 yrs ago, I had the luxury of being born & raised in a military home for the first few years, where a great deal of the doctors were from Europe & already had knowledge of this disorder (Aspperger's), but my mother being young couldn't handle the diagnosis & dumped me off with my grandmother & never told anyone til i started to do my family history. I found a bunch of cousins on the internet & we were in our group chatting back & forth & one of the cousins started getting irritated with me then another told her to shut up & leave me alone cause she knew I had autism, well i got mighty mad at the cousin who was trying to defend me, but she started to explain everything that I do which is exactly like about 30 people in our close immediate family so I started to research it myself, when I told me mom I thought that's what was wrong with me she exploded on me & said she didn't ever want to hear that s**t again & I was just fine & didn't act like the other retards in our family. So she knew my whole life but I had to wait to find out. I was in MENSA when I was little, I can not memorize a phone book, can't even remember where I put my keys, I rock when I get upset, I don't like being touched, but I have to touch everything, can only wear certain clothes, I talk funny sometimes get some things mixed up to the point I stutter when i'm trying to say things. I have 4 children 3 verified with Aspergers which I probably wouldn't have had had I known about my family history but they are wonderful functioning incredible human beings. I was very violent as a child/teen because I was beaten into coma's by an angry step-father but now I'm doing fine, I've never been violent with my children. I will continue to "adjust my underwaer in public" because that's who I am. I've learned to deal with it, & now that I know what my problem is I can deal with all of it easier. I don't take meds but I probably should... my meltdowns are less frequent now that I know what's causing them but I have the luxury of having a wonderful husband who shields me from alot of lifes irritants, if they could replicate him we'd have all the problems for autistic women solved but we can't. I have found people to be very curious & very understanding when I tell them, mostly they want to know what "it feels like", which is good for me because it pulls the focus off of whatever was stressing me out so bad that I had to declare it to a complete stranger, & gives me time to reload my guns so to speak. I thin the new Asperger's diagnosis is the replacing the ADD/ADHD diagnosis & those 2 things are very different. Which is very dangerous. We live in Washington who has an autism center & they diagnosed me as an adult & my teens & one adult child. They have support groups for us, for parents & a great website. Again I hope that all of the spectrums of this disorder are covered here bacasue I don't want someone running from me because they think I'm going to pound on them. Have you ever had your daughter think of volunteering with a school program for autistic kids? No one else is going to understand them like we do! There was a lady at the store with 3 autistic kids, 2 were very severe, she was freaking out & the kids were running around flapping there arms screaming & I found the middle point of the worst one, sat down in the middle of the floor in his circle & waited for him to run by & made an airplane noise finally he stopped & sat next to me & started making the same noise, then I stood up went to his mom's cart held on to it, the other 2 fell in line & we walked out to her car. She asked me how I did that, I told her I was autistic too & that he obviously got overloaded & was trying to drown out the sound of all the people but especially the cash register & that he just needed another focal point. She said it was okay for me to do it but she didn't think she could Huh? I said lady if your kid was bleeding in public you would put a band-aid on him & give him the care that he needed wouldn't you she said of course well this is him bleeding. Her & I are friends now she has my number & isn't afraid to use it! LOL! Also have your daughter try janitorial work, I do that when my health permits, no people around I do what I have to, & it's consistent work |
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January 5, 2008, 11:44 am PST
Quote From: kpag18 My youngest child has Autism. She is now 19. She lives in an apartment with 24-hour support staff. She has lived independently for a year and a half, and although it was the hardest thing I have ever done, it was the best choice for her. She would never have learned to live independently if she continued to live with me because I would enable her every move. I love her too much to watch her struggle, so I tend to spoil her! She has no other family support in her life, as her Dad, brother and sisters do not bother with her beyond an occasional phone call, and all other relatives live far away. She needed to have the opportunity to develop her own lifestyle and friends, and now she has that. She is still working on her High School Degree, and she has a job (with a job coach to assist her). I talk to her daily, by email and phone, and I still spoil her at my house on the weekends, but she has learned to do so much for herself and I am so very proud of her accomplishments. And although I still cry the whole way home every time I leave her, the most important thing is that I know that she will continue to prosper and succeed long after I'm gone!! I know how it must break your heart when you leave but the bravest thing you can do is what you've done by stepping up to the plate & saying hey what else is there out there that I can give her to help her succeed? I don't know if I could be that strong or that brave, as a matter of fact I'm positive I couldn't. Thank you for being a good caring mom |
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January 5, 2008, 12:25 pm PST
Quote From: brandia I also was very concerned when I read the title & lead-in... I have Aspergers also & I am hoping that that part of the Autism spectrum is also covered. It's very hard for me to tell people I have autism. When I do they just look at me like "Duh" I have to explain that there's different levels & spectrums of the disorder & that NO I'm not the rainman I don't have to get my underwaer on thursday from K-Mart but I do have some idiosyncrasies that result from this. Autism is a genetic disease, it runs rampant through our family. I am just learning about a diagnosis that was made on me over 38 yrs ago, I had the luxury of being born & raised in a military home for the first few years, where a great deal of the doctors were from Europe & already had knowledge of this disorder (Aspperger's), but my mother being young couldn't handle the diagnosis & dumped me off with my grandmother & never told anyone til i started to do my family history. I found a bunch of cousins on the internet & we were in our group chatting back & forth & one of the cousins started getting irritated with me then another told her to shut up & leave me alone cause she knew I had autism, well i got mighty mad at the cousin who was trying to defend me, but she started to explain everything that I do which is exactly like about 30 people in our close immediate family so I started to research it myself, when I told me mom I thought that's what was wrong with me she exploded on me & said she didn't ever want to hear that s**t again & I was just fine & didn't act like the other retards in our family. So she knew my whole life but I had to wait to find out. I was in MENSA when I was little, I can not memorize a phone book, can't even remember where I put my keys, I rock when I get upset, I don't like being touched, but I have to touch everything, can only wear certain clothes, I talk funny sometimes get some things mixed up to the point I stutter when i'm trying to say things. I have 4 children 3 verified with Aspergers which I probably wouldn't have had had I known about my family history but they are wonderful functioning incredible human beings. I was very violent as a child/teen because I was beaten into coma's by an angry step-father but now I'm doing fine, I've never been violent with my children. I will continue to "adjust my underwaer in public" because that's who I am. I've learned to deal with it, & now that I know what my problem is I can deal with all of it easier. I don't take meds but I probably should... my meltdowns are less frequent now that I know what's causing them but I have the luxury of having a wonderful husband who shields me from alot of lifes irritants, if they could replicate him we'd have all the problems for autistic women solved but we can't. I have found people to be very curious & very understanding when I tell them, mostly they want to know what "it feels like", which is good for me because it pulls the focus off of whatever was stressing me out so bad that I had to declare it to a complete stranger, & gives me time to reload my guns so to speak. I thin the new Asperger's diagnosis is the replacing the ADD/ADHD diagnosis & those 2 things are very different. Which is very dangerous. We live in Washington who has an autism center & they diagnosed me as an adult & my teens & one adult child. They have support groups for us, for parents & a great website. Again I hope that all of the spectrums of this disorder are covered here bacasue I don't want someone running from me because they think I'm going to pound on them. Have you ever had your daughter think of volunteering with a school program for autistic kids? No one else is going to understand them like we do! There was a lady at the store with 3 autistic kids, 2 were very severe, she was freaking out & the kids were running around flapping there arms screaming & I found the middle point of the worst one, sat down in the middle of the floor in his circle & waited for him to run by & made an airplane noise finally he stopped & sat next to me & started making the same noise, then I stood up went to his mom's cart held on to it, the other 2 fell in line & we walked out to her car. She asked me how I did that, I told her I was autistic too & that he obviously got overloaded & was trying to drown out the sound of all the people but especially the cash register & that he just needed another focal point. She said it was okay for me to do it but she didn't think she could Huh? I said lady if your kid was bleeding in public you would put a band-aid on him & give him the care that he needed wouldn't you she said of course well this is him bleeding. Her & I are friends now she has my number & isn't afraid to use it! LOL! Also have your daughter try janitorial work, I do that when my health permits, no people around I do what I have to, & it's consistent work I haven't been here for a while but it looks like everyone here had some kind of a meltdown themselves. Either no one read my post or they chose to ignore it. So I will put my responses in neuro-typical form so maybe someone will get "it"
1) I never had a single vaccine til i was 11 & stepped on a light bulb
2) Thirty-three (33) people in my family alone have autism in all of it's spectrums, I know I counted & I'm compulsively good about counting
3) I am 41 yrs old, my mother never got an ultrsound with me, nor an x-ray, nor did she have any vaccines while pregnant with me
4) My mother most certainly did NOT drink while she was pregnant with me as she doesn't drink because she's a Native Alaskan/American
5) I had my original diagnosis on base in Montana by a european doctor who was very knowledgable about the whole spectrum for that day & age
6) I don't hit my kids, I don't go around punching people in the face when I get frustrated
7) 3 out of 4 of my biological children also have high functioning autism
8) I am autistic BECAUSE I have autism. I don't care how you say it as long as you're not being rude
9) Yes!!! We are all different in our manifestations of our autism, we are all just as unique as any neuro-typical person, because that it the whole point... We are all still people just like everyone on this whole earth.
10) No there is no cure, there is treatment & intervention & given the right tools & a positve environment we will thrive & even flourish!
It was getting so ridiculous in here that when a young autistic girl wrote in her opinion someone told her that she should know what she's talking about & to go do her homework... Duh lady, her life is her knowledge, trust me she knows more than your pre-scripted soap box antics will ever come close to.
Is it easier to blame the pharmacuetical companies than to accept that there's one little strand in your own DNA that is just a little off the beaten path. I'm autistic & I LOVE ME the way I am. Is someone thinking that if they cry wolf long enough the pharm. co.s are just going to one day "oh okay it was us, here's your check for a bajillion dollars" ???
This was supposed to be a forum to help parents, children & caretakers, to explore the whole gamualt of all of the spectrums not a witch hunt. A few in here might be able to a bully a few others in here, trust me I'm not in that catagory. I have very good language/verbal skills. Read the responses from the neuro-typicals... then read the responses from us aussies. Not saying all neuro's are bad but good grief |
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January 5, 2008, 12:27 pm PST
Quote From: ramair Oh, yeah? I printed, and read, all five pages. No where, do they say "not found"...In fact, they strongly suggest a link between thimersol and many neuroligical problems, including autism. Did you notice the use of the word "SUGGEST" ? I could also suggest that I have a tail... Does that make it so? |
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January 5, 2008, 12:59 pm PST
Quote From: mrsmelodie As I have a child, and one might say "He's cured!" and in many ways he is a poster child for early intervention and alternative therapy... and trust me, I give back to the community ten fold. But, the experts will say there is NO correlation btw the shots and the ism... But those of us who lost a child, who was Neuro-typical, to this epidemic...we know differently. That was quite possibly the saddest statement I have ever heard:
But those of us who lost a child, who was Neuro-typical, to this epidemic...we know differently
Your child didn't die!!!!!!!!! He is still there, he still needs you to love him, he is not your idea of perfect but my Lord woman he's still your child. Do you just spend your days looking at him, being angry that he is who he is? My heart is breaking for him right now. So he not what you thought you'd get... are you perfect?
I'm wondering if the early intervention was your attempt at trying to fix your "broken" child, not for his well being, but to make things easier on you. There is no cure & again: I will state after reading this message board, you can keep your nuero-typicalness, I's rather be an Aussie, Aspy, Autistic anyday |
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