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autism - a blessing in disguise


old goat

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We spent the entire day yesterday going to another doctor, but it was not very productive. The doctor was terrific, a really nice fellow with a cool accent, but he too says there isn't much that can be done beyond what we have done to date.

 

To date: Emory Autism Center diagnosis. Medical testing and follow up with blood work, neurology and all that jazz. More diagnosis info and confirmation of the diagnosis by experts. More advice on what to do but little help to get it done.

 

School - what a pain! We have tried so hard to keep the "positive" attitude and to deal with folks that just don't understand the diagnosis with mixed at best and miserable at worse results.

 

Church - we attend church every service - even Sunday evening and Wednesday's. Most often we take our child with us and hope that he doesn't upset someone else.''

 

Home - our entire life revolves around the child. Sleep, eat, everything is based on the needs of this child. Our social life went up in flames. Even family members have a difficult time understanding the problem and behavior of this child so why would I expect the educational system or governmental systems to understand what he needs or how to relate to a child that is so hard to relate to.

 

I have been thinking, it is time that we parents and grandparents come together. I have read all the sites and literature and I don't see a lot of real time info - facts, figures, etc - but not real time events. I can't fight the school system alone. They don't want these kids in the system. The new voucher law for Special Ed might be a benefit - if we ever get private schools up and running that can really help our kids, but until then what do we do?

 

I have real time stories and events that makes even the doctors angry, but the schools are not accountable. They isolate us as parents so that we can't talk to each other. Pcom is a forum where we can come together and educate each other and others.

 

My children are wonderful kids - a little weird and yes, they can be behavior "problems" because of a disability, not because of bad parenting or because they are bad kids. Why oh, Why can't I make the system understand the problem is with their system and old way of dealing with kids not the kids?

 

When time goes by and instead of 13% disablied in a school becomes 25% or more per school - inclusion won't work. Typical, accepted behavior intervention techniques won't work with autistic kids - if anything it makes them worse! Educationing thru tests won't work and all that paperwork required to document the "bad behavior" is unrealistic and will become overwhelming. What then? Oh, yeah! The new voucher program.

 

Okay, anybody out there ready to open a special ed school just for autistic children - a wide range of disabilities - for $9000 per student, per year? If so, give me a call. I'm ready to enroll your first student.

 

As to reality - lets band together and try to figure this out so that as a collective group we can accomplish real things. How many autistic children are in this county? How many parents/guardians/grandparents are trying to work thru the system to provide for their children? What is the future of these children? Can they function in the real world when the elementary/middle school world rejects them now? Let's discuss.

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I have a friend who has an autistic child. She has worked wonders with her. Check out her website at www.natureshealingway.com She practices holistic medicine and through a special diet and vitamin regime that she created this child has pretty much made a complete turn around. People who meet her for the first time have a hard time believiing she is even autistic. Good luck and God Bless...

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OldGoat:

 

this is a daunting problem and I more than understand your frustration with the schools and their lack of understanding of these kids. We do need to organize and share information regarding these kids and the approach that the schools is taking. As I understand it they are seeking to remove parapro aides and mass mainstream the kids.

 

This to me is a strategy predicated on the idea that next year, the Georgia General Assembly will pass SB 10 which caps the funding for which the schools would be liable to that they expended when the parent pulls the child from school. By eliminating assigned aides, closing the special needs classes and mainstreaming the kids, the schools will literally be cutting back the funding they provide these kids by several thousands of dollars per child.

 

It is my concern that they are doing this inorder to duck their responsibility to provide an appropriate education for these kids as required under the individuals with disabilities education act (IDEA).

 

This is particularly pernicious in regard to younger children with autism as these kids have a chance ... about a 50-50 chance, of retraining their brains with application of a program of intense one-on-one training based on adaptive behavioral analysis. But these programs, even when practiced in a public school setting, can run several tens of thousands of dollars.

 

The other aspect of this is that schools across the nation have more and more often been required, under IDEA, to provide this kind of intense program as this 'educational' approach time and time again, has been proven to work leaving roughly half the children so treated, literally indistinguishable form normal functioning children about the half the time. Even more important is that those whose disability is greater, show great progress and while they may remain disabled, are able to function at a much higher level than if they are not able to obtain the treatment.

 

This approach ... the approach capable of providing broad-based improvements ... is an expensive educational intervention which raises the question of whether the schools, by choosing instead to restrict and deny services and instead over-emphasize the least restrictive environment over all other demands placed upon them by the law, are really seeking to lower dramatically the costs they would incur in providing a free and appropriate education to these kids.

 

Couple the denial of services with the total inappropriateness of the all-inclusion model and the cost expended per student may drop from a potential $50,000 or more to the 'basic' cost per child expense of a normal functioning child (as these kids will get virtually the same services) of something more like $6,000.

 

So, by denying the actual level of services needed, ($50,000) are they setting the kids up to fail because of no aides and no special small classes? Obviously, avoiding doing what is appropriate (and has been ordered by the courts in many states) the idea is they will so frustrate the parents that they seemly have no choice but to ask for a private voucher at a cost of $6200 per student because they are continously being called to the school to get their 'disruptive' child.

 

Yep, they cut costs and cut risk of losing a court case by not doing the job. In the context of SB10, the law creating the vouchers, this is a good idea if you really don't want the kids in your school.

 

In regard to DJ54's assertion that diet modification has resulted in a miraculous improvement in a friends child, as a parent with autism; I do note that such miraculous conversions do happen. The problem is that sensitivity to foods, while it may impact the behavior of some children with autism, is very rarely capable of providing the miraculous improvement reported in this case.

 

But Old Goat, don't be so quick to let them have their way thinking that you'd rather have the $6,200 (or the $9 grand).

While a private educator may do better than the public schools with the $6,000 they would pay, it won't touch the $50,000/yr that ought to be have to pay to give these kids a free and appropriate education that meets their needs and avoids, when they turn 18 or 21, being on disability for 70 years. (From a societal standpoint, if you could eliminate those long terms costs on literally millions of kids -- not to mention quality of life issues -- it makes good sense to require a process or treatment when it can work well (150,000 program) than to have them collect social security at $20,000/yr for 75 years ($1.5 million)

 

As the guy who used to sell oil changes on TV used to say ... pay now or pay later.

 

 

pubby

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I have noticed in my house that pictures and figurines are turned around - stareing at the wall and not at us. I thought it was strange that in every room where there was a figurine or a framed picture they would be turned around. I would put everything in place and in a few days I would notice again that the pictures or figures were turned around. I finally figured it out!

 

The AS kid, thinks these objects/pictures are watching him. When on the computer, the photos of my grandparents bothered him (they were on a side table next to the computer desk) so he kept turning them around. Then in the bathroom there is a small shelf with decor stuff including a small figure of a bird - that bird is always facing the wall. Now, we know why.

 

It is amazing how he thinks and the things that bother him. Just small things you never think of. What a blessing!

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OLD GOAT,

 

I don't know your religious beliefs or where you go to church, but I just wanted to let you know that at WestRidge we have a program called ONE TO ONE that puts a trained person with each special needs child in order to let the parents have time to go into service to worship without worrying about their child. If your child does okay in a class setting, they will be allowed to participate with their 'shepherd' right beside them. It is a fairly new program but we have lots of volunteers set up waiting and willing to love on your child and put them and ease, and also to give the parent a break.

 

Please, if this sounds like something you're interested in, call WestRidge and try it out! 770-222-2125

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