Wednesday, November 25, 2009

Autism x 6 Benefit Concert to feature Lady GaGa and David Archuleta...?

An amazing thing happened to us yesterday. Robin got a phone call from Todd of EATON Alliance. They are an organization that helps people with Autism adjust to life. It seems that we missed a past email in our email box that he had sent. (like we don't do that very often, LOL) Check their site for additional details.

Anyway, Todd said that they want to do a benefit concert in Provo, Utah on or about the 17th of December. The musicians are still yet to be determined but a quick poll from the family came up with a short list of who we'd like to see:

Lady GaGa - Her songs that are favorites with the kids is "Paparazzi" and "Pokerface". She obviously is NOT an unrevealing or conservative dresser-- and not to start any rumors but, with her musical genius and very creative outfits I've been wondering if she may be an undiagnosed Aspergers. And I hope that if this blog is somehow read by Lady GaGa I do not intend ANY disrespect. Our Aspergers children are very talented and we love them and their creativeness. Will she be there? That would be sooooooo awesome!!!

David Archuleta - The whole family watched American Idol that season and voted for David from the beginning. Of course part of our hopes for David to win is because we know him. It's been mentioned he is from Murray, Utah (the same city we live in) and that he is a Mormon (Church of Jesus Christ of Latter-Day Saints), we are too. But he also lives just a few blocks from our house. Bobby goes to Boy Scouts and knows David's younger brother. And in the past month I've seen him at church twice. Will he be there? That would be sooooooo awesome!!!

Jerico Road - Robin has enjoyed their music for years and is hoping to have their music on the soundtrack of the movie script she is writing. She and Bobby went to a concert of theirs last year. Will they be in Provo that night? I think they live there. We hope they can be a part of the concert. That would be sooooooo awesome!!!

We are honored and humbled by EATON Alliance's wanting to have this concert to raise Autism awareness and as a benefit for us. Truly honored.

If you live near by or not, and would like to be there, check with Todd for additional details. They also plan to have tables available for people or organizations that work with people with Autism to set out their information.


Monday, November 23, 2009

The Chicago Tribune Takes on Alternative Autism Treatments

Below is the blog post of Lisa Jo Rudy of Guide to Autism. To use the links in the story go to her original post here. At the end of the article you will see how I feel about it.

"This week, the Chicago Tribune came out with a long piece entitled Autism treatment: Science hijacked to support alternative therapies and subtitled Researchers' fears about misuse of their work come true. In essence, the article is a condemnation of the Defeat Autism Now or DAN protocol and other biomedical treatments for autism. Among the article's statements:

Most physicians recommend intensive behavioral therapy and, if asked, warn parents away from experimental treatments.

Even so, studies have found that up to three-quarters of families with children who have autism try at least some alternative therapies.

Physicians and others in the movement -- many affiliated with the organization Defeat Autism Now! -- say their treatment protocols rest on a foundation of solid science. But the Tribune found otherwise after speaking with dozens of scientists and physicians and reviewing thousands of pages of research and court testimony.

Later this week, another article came out entitled Autism treatment: Success stories more persuasive to some than hard data. The gist of the second article: kids with autism may improve with or without therapies, so it can be very hard to know what's "really" working.

As might be anticipated, the articles have raised a storm of protest -- and an equally hefty shower of approval. Two regular commenters, Harold Doherty and Autism News Beat, take opposite perspectives. Harold is disturbed by what he feels is an anti-therapy stance by the Tribune, while Autism News Beat says "It's called journalism..... Get used to it. Expect more in the coming months as the news and entertainment media's narrative switches from "alternative medicine produces miracles" to "science is being highjacked to fool parents". Age of Autism, some of whose writers are specifically presented in a negative light in the Tribune articles, are predictably vocal in their criticism.

Whatever happens next, it seems clear that the autism wars are nowhere near over. In the present battle, the Chicago Tribune has made its point of view very clear indeed. It will be interesting to see whether Autism News Beat is right that the "narrative is changing."

My guess is that consensus is a very, very long way away."

My comments:

The fights and arguments will continue to go on and on and on... until someone does a COMPLETE study of all that is out there without bias.

Is that someone the government who is joined at the hip with the AMA, FDA, the big drug companies and more? Or will it be Autism Speaks funded by well meaning parents and concerned others?

Either way those two DO have biased agendas. And that leaves parents and their children on the sidelines still waiting for the shining knight to come riding over the hill with help. I don't think it'll happen.

I think we (Autism parents) are going to have to do it on our own if we can expect to see any real results. But how to afford it? That's the 64 million dollar question.

I hope that we can joined forces to create the wealth needed to say to hell with the government and the promises of hope from others that will never be fulfilled to make a difference for our children today.


Tuesday, November 17, 2009

Beating Up Autistic Kids

I just read a story from Texas where teachers are hurting children with special needs in the name of discipline.

On the Facebook forum I answered questions from a concerned parent: I do not have an autistic child but ... My children attend a school that does have autistic and other special needs students. What is the best way to handle a situation where a student with special needs does harm someone else or does bully or spit on someone? I know it happens but do not know what parents of special needs children think is proper procedure. If my son spit on someone or bullied someone or hit someone they would be disciplined and possibly suspended and I am wondering what is acceptable punishment for special needs students. I am sorry if this upsets anyone but I really want to know?

I said: "I have my methods that work very well, however I will probably upset some 'gentler' folks. I use what has been termed in the past as 'tough love'. Bottom line I don't let them get away with anything. It probably helped that I had 4 NT children in a first marriage. I treat our 6 ASD pumpkins like I would an NT child and do not let them get away with bad behavior because they are 'disabled'.

At our school they use a two hand to one arm hold on a child to guide them away from a situation and to a classroom set aside for children having problems. An aide or teacher is there to help direct their emotions away from things harmful or disruptive.

For a school to allow a child to be physically harmed in the name of discipline is criminal and arrests and jail time need to be given. If a parent did the same thing it's abuse and the state steps in. School districts and teacher must be held to the same standard. If I can help in any additional ways please let me know. That goes for anyone else reading this too."

What do you think?