ladirushfan80 Posted October 17, 2006 Share Posted October 17, 2006 a friend of mine sent this to me today.... i thought, if anyone was in her area, and wanted to join in...help out.... QUOTE Hello Friends! I recently accepted the challenge of walking again and being team captain in the Autism Speaks' Walk for Autism Research fund-raising event. Walk for Autism Research is the signature fundraising event of Autism Speaks and is the nation's largest Walk program dedicated to autism research. Since its inception in May 2000 approximately 171,000 people have participated in Walk for Autism Research and collectively 65 events have raised over $18.3 million for autism research. I am asking you to help by supporting my fund raising efforts with a donation. Your tax-deductible gift will make a difference for chldren like Alex and Christopher. Together we can make a difference by advancing and accelerating autism research. It is faster and easier than ever to support this great cause - you can make your donation online by simply clicking on the link at the bottom of this message. If you would prefer, you can also send your tax-deductible contribution to the address listed below. More information on Autism Speaks, its programs and autism in general can be found at their website: www.naar.org Any amount, great or small, helps. I greatly appreciate your support and will keep you posted on my progress. Please forward this on to anyone who you think would be interested in donating to autism research. Thank you again! Anne Jones and the Jones Family! Click here to visit my personal page. If the text above does not appear as a clickable link, you can visit the web address: http://www.autismwalk.org/site/TR?px=10032....&s_tafId=14867 Click here to view the team page for Autism Crusaders If the text above does not appear as a clickable link, you can visit the web address: http://www.autismwalk.org/site/TR?team_id=....&s_tafId=14867 Link to comment Share on other sites More sharing options...
GhostGirl Posted February 22, 2007 Author Share Posted February 22, 2007 This is a great, short article about living with autism. http://www.cnn.com/2007/HEALTH/02/21/autis...anda/index.html Link to comment Share on other sites More sharing options...
owlswing Posted February 22, 2007 Share Posted February 22, 2007 Thanks for sharing the article GG Link to comment Share on other sites More sharing options...
GhostGirl Posted February 22, 2007 Author Share Posted February 22, 2007 QUOTE (owlswing @ Feb 22 2007, 11:35 AM) Thanks for sharing the article GG You're welcome. Thanks for reading. Link to comment Share on other sites More sharing options...
Daylin Posted February 22, 2007 Share Posted February 22, 2007 QUOTE (GhostGirl @ Feb 22 2007, 11:28 AM) This is a great, short article about living with autism. http://www.cnn.com/2007/HEALTH/02/21/autis...anda/index.html Very interesting and informative, GG I found this particular paragraph very positve.... Thirty or 40 years ago, life would have been different and much harder for Amanda, says Morton Ann Gernsbacher, a cognitive psychologist who specializes in autism at the University of Wisconsin-Madison. "The Internet is providing for individuals with autism, what sign language did for the deaf," she says. "It allows them to interact with the world and other like-minded individuals on their own terms." Link to comment Share on other sites More sharing options...
GhostGirl Posted March 22, 2007 Author Share Posted March 22, 2007 Tonight Larry King did a show about autism. I don't know if anyone here caught any of it, but mostly (like almost everything I see on TV re: autism) it was a disappointment. Two of his guests were Toni Braxton and Gary Cole, both of whom have children with autism. But, they made a point of talking about how they can afford to give their children 40-60 hours of therapy per week. Yeah, that's great...easy to do for us "normal" people, too. There were a few clips from the documentary that I posted a link to here a while back called "Autism Every Day." This film shows in a powerful and realistic way what life is like with a moderate-to-severely affected child. So that was a positive... Something that really hit me hard was the following statistic. Back in the 50s, polio was considered a national epidemic and emergency...it affected 1 out of every 3,000 children. People PAID ATTENTION. Today, autism affects...SEVERELY affects - 1 out of every 150 children in the U.S. - 1 out of every 94 boys will be diagnosed this year. Where's the alarm? Why aren't people marching in the streets? I just don't get it. It breaks my heart. One dad in the film said something that made me cry. He said, "When someone's child dies, they mourn, but they get closure. My son is alive, but he's LOST to me. I had to give up my dreams of a normal life..." Where's the outrage? In many ways my son has been stolen from me, and I'm as mad as hell. Please, get involved in any way you can. Spread awareness. Find a way to reach out to a family who's affected. We need all the help we can get just to get through a day. Link to comment Share on other sites More sharing options...
1-0-0-1-0-0-1 Posted March 22, 2007 Share Posted March 22, 2007 QUOTE (GhostGirl @ Mar 21 2007, 10:23 PM) Something that really hit me hard was the following statistic. Back in the 50s, polio was considered a national epidemic and emergency...it affected 1 out of every 3,000 children. People PAID ATTENTION. Today, autism affects...SEVERELY affects - 1 out of every 150 children in the U.S. - 1 out of every 94 boys will be diagnosed this year. What part of that isn't making red flags and bells go off for the medical community? What, not enough money can be made from treating/preventing autism? Link to comment Share on other sites More sharing options...
owlswing Posted March 22, 2007 Share Posted March 22, 2007 GG again Thank you for sharing this. Why this gets so little attention is beyond any scope of reason. Link to comment Share on other sites More sharing options...
GhostGirl Posted March 22, 2007 Author Share Posted March 22, 2007 Thanks, 1001 and owlswing... I get SO mad about this stuff...it helps to vent here. Link to comment Share on other sites More sharing options...
blonde77th Posted March 22, 2007 Share Posted March 22, 2007 GG you have the Right to vent Hon !! Vent anytime is unfair is all i can say that enough is not being done about this !! Link to comment Share on other sites More sharing options...
CeeJ Posted March 22, 2007 Share Posted March 22, 2007 This world that we live in just isn't what it used to be. We used to get involved and help others and now people just do what they need to do for themselves. I worked in a doctors office and there were 2 great doctors that did everything possible help EVERYONE no matter what type of insurance or money they had. I wish that the medical profession would see that Autism is something that needs to be looked at more closely.It isn't something that is going away on it's own. It is very sad that we don't know more about it. Vent away GG. You have every right to be mad as hell. I know that when I see and read things that aren't right I get mad. So for you to be angry is totally understandable and know that you are not alone. Link to comment Share on other sites More sharing options...
GhostGirl Posted March 22, 2007 Author Share Posted March 22, 2007 Thank you for the support, blonde and CeeJ. It means more than you know. http://img.photobucket.com/albums/v297/RushBabe/Board%20Pics/Newsig.jpg Link to comment Share on other sites More sharing options...
Pags Posted March 22, 2007 Share Posted March 22, 2007 QUOTE (GhostGirl @ Mar 21 2007, 10:23 PM) Tonight Larry King did a show about autism. I don't know if anyone here caught any of it, but mostly (like almost everything I see on TV re: autism) it was a disappointment. Two of his guests were Toni Braxton and Gary Cole, both of whom have children with autism. But, they made a point of talking about how they can afford to give their children 40-60 hours of therapy per week. Yeah, that's great...easy to do for us "normal" people, too. There were a few clips from the documentary that I posted a link to here a while back called "Autism Every Day." This film shows in a powerful and realistic way what life is like with a moderate-to-severely affected child. So that was a positive... Something that really hit me hard was the following statistic. Back in the 50s, polio was considered a national epidemic and emergency...it affected 1 out of every 3,000 children. People PAID ATTENTION. Today, autism affects...SEVERELY affects - 1 out of every 150 children in the U.S. - 1 out of every 94 boys will be diagnosed this year. Where's the alarm? Why aren't people marching in the streets? I just don't get it. It breaks my heart. One dad in the film said something that made me cry. He said, "When someone's child dies, they mourn, but they get closure. My son is alive, but he's LOST to me. I had to give up my dreams of a normal life..." Where's the outrage? In many ways my son has been stolen from me, and I'm as mad as hell. Please, get involved in any way you can. Spread awareness. Find a way to reach out to a family who's affected. We need all the help we can get just to get through a day. It's like if I could give up a wish to see that you could have him back, I'd do it. I'm so sorry for what you have had to endure. I hope you continue to find strength. Link to comment Share on other sites More sharing options...
RushRevisited Posted March 22, 2007 Share Posted March 22, 2007 Keep fighting the fight GG and vent away Link to comment Share on other sites More sharing options...
GhostGirl Posted March 22, 2007 Author Share Posted March 22, 2007 QUOTE (paganoman @ Mar 22 2007, 09:23 AM) It's like if I could give up a wish to see that you could have him back, I'd do it. I'm so sorry for what you have had to endure. I hope you continue to find strength. Thank you so much. You guys have no idea how much that helps. Link to comment Share on other sites More sharing options...
GhostGirl Posted March 22, 2007 Author Share Posted March 22, 2007 QUOTE (RushRevisited @ Mar 22 2007, 09:27 AM) Keep fighting the fight GG and vent away That means so much, bro. Thank you. <sniff> Link to comment Share on other sites More sharing options...
Digital Man Posted March 22, 2007 Share Posted March 22, 2007 You're a brave, strong woman and a fantastic Mother! Vent as much as you heed to, that's why we're here. ~K Link to comment Share on other sites More sharing options...
GhostGirl Posted March 22, 2007 Author Share Posted March 22, 2007 QUOTE (Digital Man @ Mar 22 2007, 09:37 AM) You're a brave, strong woman and a fantastic Mother! Vent as much as you heed to, that's why we're here. ~K It's hard to stay down with friends like you guys. I'm extremely grateful. Link to comment Share on other sites More sharing options...
Rolinda Bonz Posted March 22, 2007 Share Posted March 22, 2007 QUOTE (GhostGirl @ Mar 21 2007, 07:23 PM)Two of his guests were Toni Braxton and Gary Cole, both of whom have children with autism. But, they made a point of talking about how they can afford to give their children 40-60 hours of therapy per week. Yeah, that's great...easy to do for us "normal" people, too. The State of Arizona Department of Developmental Disabilities provides several different kinds of therapy and services for free. My son, Tim, age 7, was getting music therapy for a year, but we just cancelled it when he began to lose interest. I didn't sign him up for the speech or occupational therapies, because he gets those at his public school as part of his IEP (that's Federal law and also free.) I am getting respite care for him, which is bascially a babysitter with some special training to come and watch him while I go to the grocery store and church on the weekends. The State pays for 60 hours per month, which is more than I can use. Arizona also has me signed up for 60 hours per month of habilitation services, where a worker comes and trains Timothy to clean and care for himself. He's still not potty trained and can't bathe and dress himself at age 7, so I'm looking forward to bringing somebody in to help with this. It is really hard to find a good provider for these services. Arizona contracts with agencies that employ the actual care providers, and that's a big help in finding candidates. However, the interview and trial periods are emotionally exhausting and very time consuming. Even though most of them are good people, the hard part is finding the right match with Tim. It's worth it in the long run, though. Anyway, I'm not sure what your state offers in the way of therapy and/or services, but I can help you find out more about it, if you would like me to. My job provides me with a lot of insight into the Medicaid system, and that gives me a bit of an advantage. I'd be happy to share it with you. But even while these things help children with autism and their parents, the daily challenge is still there...and the painful loss of dreams. It's amazing how subtle those dreams are. You know, I didn't have Tim while thinking "he's going to be president" or anything like that. But to hear people talking about saving for their own kids' college education makes me stop and wonder if Timothy will ever go to college. Or hearing about so-and-so's grandchildren makes me wonder if Tim will ever get married or have children of his own. And its those kinds of dreams that it hurts to lose. On the other hand, Timothy is a fascinating little guy who comes up with new ways to live. Sometimes he teaches me what is right and good. So it will be interesting to watch and see what this kid does with his life. I will help him in any way that I can, and I'm happy to have a front row seat. Link to comment Share on other sites More sharing options...
GhostGirl Posted March 22, 2007 Author Share Posted March 22, 2007 Thanks, Bonzy, for sharing. It's so good to not feel alone. If you can find about anything about what Alabama offers that I haven't discovered, please...let me know. I've tried and tried to get answers. I am quite sure that Stephen will never marry...or even live independently. I'm trying to come to grips with what might happen if he gets too hard for me to control. It scares me, I won't lie. But, you're right...some days he is a joy, and I try to drink in those moments. He's not potty trained either...isn't THAT fun with a 7 year old? Anyway, thanks again for giving me someone to talk to who TRULY understands. With much ~M Link to comment Share on other sites More sharing options...
Rushman14 Posted March 23, 2007 Share Posted March 23, 2007 QUOTE (GhostGirl @ Mar 22 2007, 12:49 PM)Thanks, Bonzy, for sharing. It's so good to not feel alone. If you can find about anything about what Alabama offers that I haven't discovered, please...let me know. I've tried and tried to get answers. I am quite sure that Stephen will never marry...or even live independently. I'm trying to come to grips with what might happen if he gets too hard for me to control. It scares me, I won't lie. But, you're right...some days he is a joy, and I try to drink in those moments. He's not potty trained either...isn't THAT fun with a 7 year old? Anyway, thanks again for giving me someone to talk to who TRULY understands. With much ~M Hi GG, I'm fairly new to the board and just came across your post. You are definitely not alone as I've also been hit by the mack truck that is autism. My beautiful daughter Kara who is 3 and half is also suffering from this affliction. I've suspected it since she was 18 months and I've spent the last 2 years dealing with the grief, guilt, anger etc. I'm dealing with it much better these days. Only now has my wife been able to come to grips with the fact something is wrong. She's been in major denial but she has finally agreed to get her some therapies. Like you, I have wondered if Kara was brain injured by a vaccination. I want to look into chelation but my wife looks at me like I'm insane when i talk about mercury poisoning. It's been a nightmare. Fortunately Kara is pretty high functioning. She is very happy, starting to speak and is generally very bright. However, I also live with the fear that she will always be dependent on me and I worry what will happen once she outlives me. Anyway, hang in there! My thoughts are with you! Link to comment Share on other sites More sharing options...
GhostGirl Posted March 24, 2007 Author Share Posted March 24, 2007 Thanks so much. I appreciate you posting. All the support I get from here means more than you guys know. Stephen's with his grandma tonight, so I have a night to myself. I'll miss him...but this is nice, too. Link to comment Share on other sites More sharing options...
ladirushfan80 Posted March 24, 2007 Share Posted March 24, 2007 QUOTE (GhostGirl @ Mar 23 2007, 09:52 PM) Thanks so much. I appreciate you posting. All the support I get from here means more than you guys know. Stephen's with his grandma tonight, so I have a night to myself. I'll miss him...but this is nice, too. yes it is nice for you to have some GG time!! my thoughts and prayers are always with you.... Link to comment Share on other sites More sharing options...
Presto45 Posted March 24, 2007 Share Posted March 24, 2007 Autism is a really horrible disease and I am mad at Congress that they didnt get a Full Bill on Autism. They need to understand that alot of Kids have this Disease. I also am praying for anyone who has kids with it !!! Link to comment Share on other sites More sharing options...
Daylin Posted March 24, 2007 Share Posted March 24, 2007 QUOTE (ladirushfan80 @ Mar 24 2007, 06:54 AM) QUOTE (GhostGirl @ Mar 23 2007, 09:52 PM) Thanks so much. I appreciate you posting. All the support I get from here means more than you guys know. Stephen's with his grandma tonight, so I have a night to myself. I'll miss him...but this is nice, too. yes it is nice for you to have some GG time!! my thoughts and prayers are always with you.... Always Link to comment Share on other sites More sharing options...
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