How This Works

you know what i have a friend who's cousin has illness like yours i wish you will pray for her...
posted by triz_wong on 9/01/08 4:48: AM

My daughter was very attentive and on track with her milestones until she reached age two. My husband and I noticed her decline in activities she normally loved such as her baths and play time with other kids. She use to say words like mine, more, baby, Dada and so on. After she reached two one day we just never heard another word only noises she would make. Her eating almost came to a complete stop so her pediatrician put her on pediasure for children for nourishment. She lost all motor skills and coordination and stopped anything thing remotely close to walking, sitting up, crawling, roll over. She stopped growing and would not sleep. It was like watching her slip further away everyday. Finally after a year of specialist she was diagnosed with severe autism, she was three. Since then we have not looked back and learned to understand her all we could. We love her and she is the angel in our life. But more must be done to stop or find a cure. Over half the world has some form of Autism thank you for spreading the word and for your continued support in research for this cause. Huggs ~Ivyy
posted by Ivyy on 8/31/08 6:43: PM

My daughter, Leslie, was diagnosed at age 9 w/Rett Syndrome (now 30) which is considered to be on the low end of the autism spectrum. I've learned so much about the true meaning of life through our struggles. But, things need to be different for these children. They deserve a fighting chance and from the beginning of diagnosis, not years later. We don't do that w/other conditions - like diabetes, autism is no different. God Bless the children!
posted by Leslie's mom on 8/30/08 11:08: AM

Very moving and very true....I have a 12 1/2 year old boy who wasn't properly diagnosed until a year ago! I had to fight as well with his councilors(who are not properly trained for his type of disability) since he was 3, and he has SSI which gives you automatic Medicaid coverage by the state I live in, NY. LISTEN TO THIS: if you have this basic coverage, YOU ARE STUCK WITH THE CARE YOU ARE GIVEN WITHOUT CHOICE AND THEY WILL FIGHT YOU ON IT! I had to pay $650 out of pocket to get the right diagnosis and am currently looking for proper intensive care. So far, there is nothing and his doctor freaked out that I went to someone else. He is very tiny, and is on alot of meds for the ADHD part, which is necessary so he doesn't harm/kill himself unknowingly. He is mostly verbal, thank God, but still cannot understand the world around him. We are in a fight for his life, and I BEG ANYONE WHO CAN HELP TO TAKE THIS SERIOUSLY-PLEASE HELP THESE KIDS, THEY ARE PART OF OUR FUTURE TOO AND DO HAVE BRILLIANT MINDS. God Bless...
posted by Jenneen Schoonmaker on 8/25/08 5:35: AM

A very moving video. It seems that we need more legislation to help these children.
posted by Debbie on 8/24/08 5:51: PM

Start early intervention this is the only answer. Ask Jenny McCarthy.
posted by Cheryl on 8/24/08 12:20: PM

I work around autistic children. I am a paraeducator and absolutely love these kids. All though challenging, it is also very rewarding. I believe God blesses special people to parent these children. Consider yourself blessed and know more and more people are becoming aware and want to help. God Bless you all!
posted by cathy o on 8/21/08 9:06: AM

Laura and MJI: I do not know how severe your conditions are, so I cannot make any assumptions. However, I used to work for the state doing therapy for children with autism. Not all are as lucky as you. Not all can go to school with kids their age and eventually fit in. Not all can speak, or write, or communicate in any way...not even through nonverbal means. Some cases of autism are more severe, and I believe that the parents of these children are justified in their desire for a cure. They want their children to be able to function. In many cases, it is not an issue of "seeing the world differently". Their parents just want them to feed themselves, use the toilet on their own, communicate through ANY means, even learn their own name. Once again, I am glad to hear that there are individuals such as yourselves who are functioning wonderfully and do not want a "cure," but there are even more individuals out there who aren't so lucky. Please do not compare your cases to all.
posted by Sara Comish on 8/20/08 7:59: AM

Jean, electric shocks are not used in proper behavioral settings. therapies may include speech- if a child's speech is delayed or improper, physical- if a child is delayed in the ability to walk or crawl etc, and the list just goes on. The earlier therapy begins, the higher the chances are of a child being able to function better later on in life. I work with the autism population, and I love my kids to death, and would really give them my life. They have so much they can offer us if we are willing to give them the chance.
posted by Rachel Albert on 8/19/08 6:59: PM

1. Thanks for the video. 2. Exactly what therapies? I've heard of some pretty awful "behavior modification" techniques involving electric shock that are simply hideous. 3. Please make your "comments" page easier to read online. The ontrast between white and beige is not sharp enough to see easily. Thanks
posted by Jean Gerard on 8/17/08 9:45: AM

I have a son with Asperger's and I also struggle with Asperger's. I have found that this "disablity" can be a good thing for the world at times, because we don't go along with group think - we see things differently and don't feel pressure to conform to groups. This can be good if the group is going in the wrong direction - we can help steer it in the right direction. But, I have also learned that it is important that I and my son learn how to be more "normal" too. We can use our "otherness" to see things that others can't, but then we need to conform to the normal way of communicating so that we can be productive members, otherwise people don't understand us, so don't take us seriously. I and my son are very high-functioning. I cannot speak for those who are more profoundly affected.
posted by Heather on 8/15/08 9:31: PM

God bless the children
posted by Pieri Burton on 8/13/08 8:58: AM

Each and every person must understand that each and every case under the Pervasive Developmental Disorder Spectrum is individual. There may be common causes or factors or symptoms. But each is different. And forums like this are not a place to divide and insult people for their opinions. At this particular time I do not think we have the answers yet. If we had the answer we would not be having these discussions. This is a place to come together and support and encourage each other so all can live to the fullest. Please be more kind to each other. Until you walk in our shoes you will never know how it feels. And that is for anything under the sun not just autism.
posted by Cyndi on 8/12/08 5:00: PM

Laura - You have no idea what you are talking about. I was a therapist for years working with these autistic children. They DO NOT WANT to be like this. A 2 year old is so proud of themselves when they can finally respond with a look, you have NO IDEA! It takes months to get that response but once it's learned, it's learned and these children can learn to relate, even if it is with just a look! They are so frustrated that they can't communicate! Thank goodness everyone look at facts and THANKS SO MUCH to influential groups, like FIVE FOR FIGHTING who know the truth and raise awareness to people as ignorant as you and hope for these children.
posted by Heidi on 8/12/08 7:34: AM

Thank you for what you are doing. I am an old granny who had a younger brother diagnosed as 'retarded' & 'brain damaged' back in the early '60's. Not much was known about Autism in those days. Unfortunately, like many Autistic children, he had a special ability, the ability to get out of any locked door, no matter how many locks were on it. He was also extremely hyperactive and completely non-communicative. My mother took a 1 hour nap after he finally fell asleep after constant sleeplessness and when she awoke he was gone and the locked door open. He was found in a swimming pool a few hours later as the police and we were still searching for him. His life might have been spared if he had been properly diagnosed at the time. When I 1st heard about autism, it described my brother to a T. I know that was what he had and should have had treatment instead of wanting us to warehouse him in a mental ward, which my parents, who were at the end of their rope were considering about the time of his death. I pray that diagnoses will come sooner as well as help for all children despite income levels as soon as possible.
posted by prayer warrior on 8/09/08 10:50: PM

Thank you so much for helping open peoples eyes who's lives are not affected by autism. Hopefully this alone can inspire even more people to assist with research and high cost of therapy for sufferers like my little brother. Thank You and God Bless!
posted by Jimmy on 8/08/08 5:44: PM

INVESTIGATE BEFORE YOU VACCINATE. This is what is required in this age where the bond of trust has been broken by the corruption and greed from the various government and private sector groups. You have to be the best advocate for your child. If nothing else always go on with the knowledge that Thimerosal is 49.6% Ethyl Mercury by weight, and mercury in ANY FORM IS THE SECOND MOST TOXIC SUBSTANCE KNOWN TO HUMAN BEINGS ON THE FACE OF THIS PLANET!!! THAT IS A DOCUMENTED FACT!!!
posted by Mark on 8/05/08 9:17: AM

I believe, from the research I have done on the relationship of Vaccines and Autism, that there is a connection, especially with the Pertussis Vaccine, and wish there was more information given to parents before they can truly make an "informed" decision about whether to vaccinate or not vaccinate their children. I am not against Vaccinations, I am against doing so with misinformation or no information given ahead of time. Maddie
posted by Maddie Fiori-Wilcox on 8/03/08 7:42: AM

A moving message indeed! Seems to me that we need more legislation in order to cover the mounting costs for treatment and research. We need to come together as a society to support and encourage the families of people with Autism. Hats off to all of them!
posted by abaad on 8/01/08 8:28: AM

to all, I know I'm going to get negative flack for sharing my point of view. Tis life I guess, I can't make everyone happy. I don't say what I say out of spite or to appear better than anyone else. It's just my hope that some people out there will take what I say to heart and see things a bit less negative then they are made out to be. PS before I get accused: I don't agree with drug treatments either... Just look up Tardive dyskinesia...
posted by MJI on 7/31/08 11:09: PM