Mili, you gotta see this...

[Kristen (ColeysMom)]

I don't know what my problem is today... I think I'm wallowing in it... Anyway, I've been reading Oprah's message board like some miracle is going to fall from the sky or smething..der! Well, I came across this one and you gotta see it!

http://www.oprah.com/community/thread/3093?tstart=45

Here's the quote, but I figured you'd want to reply too:

buildmeup2 (http://www.oprah.com/community/people/buildmeup2) 2 posts since
Sep 18, 2007
Dear Jenny and Holly, I am the mother of a 9 year old child with autism. He was diagnosed at 3, my husband and I did everything we were supposed to do, we were smart and we were persistent. We live in central California. Our school district, county, and regional center have fought us every step of the way. And the private agencies they work with exclusively answer solely to them and do their absolute bidding. Sufficed to say, my child suffered untold harm at their mercy. This culminated in all agencies (both public and private) blatantly ignoring the child's needs, treating my family with indignity, abusing my son, violating my sons rights, vigorously seeking to illegally deem him severely autistic and retarded, causing us to have to put our assets into a legal battle and unilaterally...illegally...without an IEP...changing my son's placement from his general education classroom to a TENT in the cafeteria. They have attempted to defame my families reputation and blame us for all of it. We have stood up to it all and have filed a federal civil action against them. The IDEA claims have been settled out of court, only after my child spent over a year without services. In that year it was discovered that my son had an undiagnosed seizure disorder. A wonderful doctor in San Francisco diagnosed him and has put him on an anti seizure protocol that has changed everything. My little boy, who had been so badly traumatized by those paid public funds to care for him, has over the past year begun healing in my sole care. It has been a hell I can only describe by saying that I often felt like a prisoner in a nazi war camp...no disrespect intended to the victims of that horror.
My child has just begun to come back to the happy boy he was once and is on his way to what I hope will be an amazing progression. I share this story in a brief a way as I can so that anyone reading it can see that even the worst of stories can take a turn. And that Jenny is so right about the "mommy" instinct. I knew who my child was and that those that turned their backs on him were malfeasant. I share my story so that other parents will know that it is OK to stand up against armies to save the life a child they love. And it is the only thing to do. Any hell we must go thru, whether facing the educational community or the medical...another nightmare...is better than complying with the establishment as your child suffers untold torture. And a lot of these children are suffering in ways that we cannot imagine.
I am so grateful that Holly had the courage to state that the labeling of children diagnosed with autism as retarded...uneducable...must STOP. It is a tool that is used all to often to save the educators from having to spend time and resources on doing what they are morally and legally supposed to do. It is a national disgrace that so many innocent children have been poisoned, I absolutely agree with Jenny and Holly, and then discarded as hopeless burdens.
Sadly, my story is not a unique one. Every day, in this very country, children with autism are ignored and mistreated by personnel paid public funds to assist. And the parents that fight for them are treated like trash. Those that can are brought to costly, ugly battles. I know there will be those who have not had this experience who will want to disagree with me but I hope that they will think twice before they do. Of course there are many families who have had a different experience. But they must recognize that they are lucky not to have suffered what so many others have suffered. I hope we can come to a meeting of the minds that all children deserve the chance to learn, be cared for and progress to all they can be...not just the blessed few. The time for fighting each other in the community of families with children diagnosed with autism needs to be over.
Lastly, there are families who do not appreciate the efforts of others trying to bring their children "out of autism". Again, there are different degrees and symptoms of autism. When a family has a child that is not seemingly suffering they may not understand that there are children...and families...that are truly in physical pain. I ask them to come to a place where they can understand that suffering must not be allowed to continue. It is only natural and correct that we seek to alleviate suffering and give all children the opportunity to progress to be the best they can be...isn't that what we do for our "typical" children? Isn't that what we want for ourselves? Many of us want to improve, learn and grow well past our early years...I know I am not done progressing. Why would I put a limit on how far the person I love most in this world can go? Why would any parent?
Jenny, Holly, Oprah and the Oprah Show...thank you for your courage. I have felt so alone in my fight for my child. The word "warrior" was mentioned a few times on the show. That is how it has been for me...a lone warrior, the only barrier shielding my son against hoards with my husband desperately trying to send supplies to the front. Jenny, again, so brave to discuss what happened to her marriage. Mine is still in tact but I understand why marriages fall apart. I hope the honesty that Jenny and Holly displayed gives the general public a better picture of what is going on. Funny...general public...soon there will not be anyone outside the world of autism. It is knocking at more and more doors...and it gives no choice as to whether or not you let it in.

[milivica]

OH THANK YOU. Here is my response, which I better post here, cause it keeps zapping out there - I have no idea if it actually posted:

I would absolutely love to communicate with you further. Everything you said resonated so painfully and with such truth, for so many, including my son and I. My email is milivica1@yahoo.com

Please please email me, I don't even have a purpose, just feel the urgent need to connect with you. I'm in Wisconsin, not California. Overall, I never really knew what my child needed. I never really knew what to do, so he would 'obey' or be included (section 504) without being disruptive to others. Somehow, I even wound up sympathizing with the SCHOOL about what they had to PUT UP WITH from my dear son. But then it happened, I found a path, a way to 'cure' him from autism. I posted about it here also, it's called RDI and is here www.rdiconnect.com and works for ALL kids on the spectrum. To incorporate RDI into his school day, staff would have to LEARN, administration would have to pay, perhaps $500 per year - much less than his full time 1:1. I found this gift, this blessing, last year when he began in fifth grade. I'd found it sooner, but it took me a good 6 months or longer to really 'get' it. He is now in 6th, despite his mid second grade education - yet, once I let the school know what he needed, the response was "well who's gonna pay for all that" followed by banning me from further observation - forever - on an M-1 form, and, if I try to observe my child at school, they will call the police and have me arrested and sent to jail for trespassing.

They claimed my child's right to have me observe him, my federal right to observe, volunteer, and participate in my child's class, caused disruption to other kids, violated their privacy....hellooooo, my kid is in the special ed room all day, there are no other kids! Funny, all the aids and parent volunteers, don't seem to be a problem. The climax of my child's 5th grade year, I came after school to pick up my child, to find out besides being denied recess for a year at that point, he was being locked in a closet all year, for hours, no bathroom 'privileges' but a bucket handed to him....he couldn't tell me, he's very verbal, but yet cannot 'communicate'. Well, when I found out that day after school, went in and told the teacher what he said, and asked what really happened. At that point, I didn't believe it. She admitted it, admitted she is not following the IEP, doesn't even know how - I then told the teacher she was a detriment to my child, she was inept (after a year of fighting already) they called the cops, though I didn't swear, threaten, throw anything, make any threads...yes I did yell...I was thrown in JAIL. Never read my rights. My 9 year old daughter used her savings to bail me out. What a thing for my children to remember, the rest of their lives. The DA dropped my case but now the cops are pursuing it civilly - mind you, I am on the spectrum myself. Short of selling what equity we have in our home - and trashing the lives of our other kids - I just don't know what to do. Tried ALL the agencies, I think that really fueled my dispair even more than what the school has done to my child, and myself. The very agencies that are there to 'help' do everything but. I think they are paid to back up schools, and allow them to continue to have carte blanche with the civil and federal rights of our children, I really do.

I was saying to someone, "Remember Jim Crow laws? There were federal laws saying we all were equal, but they still had colored this and whites that and the sit on the back of the bus deal, segregated schools - DESPITE FEDERAL LAW, AND THE WHOLE NATION KNEW IT!!! It took military intervention ordered by the president for pete sakes, to get federal law obeyed. Do you see my comparison? We have IDEA and Section 504 LRE, it's all words. My one ply Scotts toilet paper is worth more than my sons 'legal document', his IEP. I am ready willing and able to pull a Rosa Parks, I am more that willing to go to jail again (which I will, if I attempt to observe - just observe!) - however, I just need someone who is the Martin Luther King Jr. of rights for the disabled, to guide me to do all the right things to HELP. I have aspergers, my son has autism, my son is black - you would think I'd have agencies lining up to help. Not so, just like in Jim Crow days. We're not 'high profile' so the Jackson/Sharpton duo are no where to be found. What do I have to do....teach my autistic child to fight dogs and beat white kids with a shoe, to get them to support his civil rights? There is the school system, and the 'special ed' school system, and they are separate, and they are NOT equal, parents in the nation with a child in special ed knows it - at least those parents that aren't so overwhelmed they have a moment to think, to breathe. All school staff in the nation know it, DESPITE FEDERAL LAW, and that's just the way it is...until a group of folks that rarely come along, get together and change it. I think the last time that happened was in 1975 when the IDEA act came to be. And what we have for our children, was not the intent of IDEA, or what those parents fought so hard for.

Can ANYONE tell me, how this is any different - the special ed system I mean, than Jim Crow for special needs children?

[Kristen (ColeysMom)]

Mili, just got the time to read this through...you should REALLY repost this. Just take out the links. There are too many posts for them to read carefully, so if you just put a space or something before the 'dot' it shouldn't look like a link, or put it this way: RDIconnect website.

BTW, how many e-mails did you get asking about RDI?

[milivica]

THREE...not three hundred or three thousand, THREE. I think it just got buried. If the site would quit booting me, I'd post it over and over, I just can't post there, grrrr.

[Kristen (ColeysMom)]

Start a new thread on the board instead of adding it to the Jenny post.

And don't go on & on about it. Start a little conversation, like...anyone hear of RDI? It's a developmental therapy.... I've doing with my son for a while and it really seems to be opening him up, anyone else have experience...