13 May 2009

Crap!

... Is what I said when I took a good gander at THIS. As of August 2011 in this proposed legislation, they're going to "track" all the autistic/ suspected autistic kids through THIRD GRADE so that they can figure out what the educational "best practices" would be with these children.


You dorks. I can tell you that "best practices" stuff for absolutely free, and you wouldn't even have to violate anyone's privacy to do it.


How about for starters we quit locking kids in closets for acting all disabled? Then maybe doing that thing called "listening to the parents" when they have a concern or want to actually, you know, sorta help craft that IEP might be nice. Another thing y'all should do is called "listen to the experts." When the parents have gone to the time and trouble of seeking out a specialist that knows a lot more than your ditzy special ed coordinator who attended a workshop on all this once (and most of the workshop consisted of legal ways to get out of helping the kid? Betya.), please just take a minute to listen to the advice they give. In retrospect, these special ed people were not ditzy. They were dang malicious because they KNEW what Elf needed to succeed and couldn't give a rip because it would cost them money and get them some heat from the people above them. How many people risked their jobs to say that what happened to Elf was wrong? How many people made any sort of formal complaint, or informed me about useful things to do that might force the district's hand?

I'll give you a hint... It's a round number.


I realize it might cost you a few pennies to implement these things in school. Hey, it might cost a lot of pennies. Don't like it? I'll be happy to sign petitions to our government asking it to please NOT link services to the disabled through the public schools for people ages three through 21. I think family-centered therapy would be much more in keeping with serving the needs of the truly disabled.


Sorry, but Joey switching a couple letters around or Sammy getting hyper and needing an extra recess ain't a disability. You might get FUNDED by the state as though it were, but it just isn't a disability like "blindness" or "having no legs" and that sort of thing is. That's why I don't think you guys really know a disability when you see it. Disability isn't always obvious like "blindness" or "having no legs."


Welcome to the 21st century. There's this thing called autism? And a lot of people have it? And I don't care so much about the cause, but I DO care that there isn't much REAL HELP out there for these children. In my price range, anyway. Sometimes when I see stories about "recovery" like this one, I want to just


Oh, how did that get deleted?


Well, anyway.


Can I mention without getting too personal the toll this sort of thing takes on a marriage? Things were AWFUL here right before Elf got taken out of school. Just awful. I'd have to pick the crying kid up. Hold that little shaking child as he begs me PLEASE don't send me back to this horrible place. Come home and fight with D as he thinks we need to give the school a "chance" (those bastards!) and he's going back tomorrow.


Think of my options.


Divorce? Great. Then I could be a single working parent, and have to send my kids back to school AND have no time in my schedule to pick the poor child up. Then instead of being in the closet for 20 minutes, he'd be there all. day. long. That would work! He'd lose a parent and we'd all of us get even more stress than we're already going through.


Prayer? Yeah, I guess that finally "worked," but do you know how hard it is to send your child into an abusive environment? To KNOW that it's abusive and not be able to say anything? To KNOW that you'd just BETTTTTTER get along with these people and try to be on their good side, because your husband won't back you up if you withdraw the kid and stomp out the door? To tell them oh... it's ok... don't worry... we'll have a better day tomorrow... and lie because you have to, when really you wish that


...

So, in conclusion, my heart goes out to those families who, for whatever reason, we left in school. And knowing we may be one of "those families" soon.


Woodjie says a couple words, but D thinks Woodjie will go to school if things aren't better. You define better. Yeah.


What am I going to do if things aren't "better?" Look at my options above. They really... stink. And to think I might have to interact with the same people who did all this to Elf, daily... and have to hear about how Woodjie is making "poor choices" and live with the fact that D doesn't want to do the lawyer thing...


I hate the whole idea. Not to be too melodramatic, but I would hate my whole life if it came to that. I can't imagine. And Woodjie doesn't even have the words to tell these people off.


Anyway...

This is one bad law. I just have enough to fight without this.

13 comments:

  1. There aren't really any words to help. Except to say I know that your blog must do a lot of good--I have learned so much by reading it. Awareness is a good thing. Now maybe I can help others in my community who deal with autism everyday. I will pray for you and I will ask others to pray for you and maybe together we can do some good. You are one of the most involved, informed, loving, concerned and incredible mothers I have ever come across. Your children are blessed to have you and we'll pray that D will become more open to what the kids need. Don't lose hope! If anyone can do this it is you.

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  2. What a crazy law! Start tracking people for one "disability" through "third grade" and sooner or later they'll redefine what disabilities can be tracked and for how long. And soon we'll have all people outside a very narrow range in handy little databases. Won't that be nice?

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  3. See, Bonnie, I'm not trying to pass D off as some insensitive clod, though maybe it sounds that way.

    He just had concerns about home education, particularly as it pertains to homeschooling an AUTISTIC child who has difficulty socializing in the first place, if that makes sense. So his struggle was to hear about me railing about all this and want the school to do the right thing... but feel that school is the best place for him...

    Etc.

    The real enemy, IMO, is the school system.

    Daja, I have some of the same concerns but "someday" is NOW when you're dealing with my kids in this regard.

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  4. Oh Mrs C, it hurts me that I cant do anything to help you except to say that I think you are FANTASTIC. My friend is a disability aide in a local kindergarten and I talk about you with her. I sent her the link to your post about how you did maths on the stairs and the wiggly seat thing.
    I understand your frustration when Elf begged you not to go back to school. Dave was bullied terribly in primary school it was Horrible and I let him stay home *sick* quite a bit.

    (((hugs))) from your friend in Australia...

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  5. It seems like an invasion of privacy and a waste of time to me. You can't just make useful generalizations from data like this. Different things work with different kids.

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  6. Then maybe doing that thing called "listening to the parents" when they have a concern or want to actually, you know, sorta help craft that IEP might be nice.What, are you NUTS? Parents don't know anything about their own kids...

    And if they are all set to track outcomes, for the children's sake... why stop at grade 3?

    I wonder if this has anything to do with the new "comparative effectiveness" health care proposal.

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  7. You have to read the fine print at the end: "None of the children has shown any sign of relapse. But nearly three-fourths of the formerly autistic kids have had other disorders, including attention-deficit problems, tics and phobias; eight still are affected."

    Also, try checking out videos of Leo at Youtube. Then you can decide for yourself.

    I do not think one can tell if a child is truly recovered until they transition to the adult world. Even some of the smartest autistic people who can speak and have IQs struggle to keep a job. How do we know Leo will not be one of them?

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  8. Kim, GOOD FOR YOU on David. I've been thinking a lot about what a "good parent" truly is and I'm starting to come to the conclusion that sometimes the experts don't know anything. My brother, you know, was bullied horribly at primary school in Australia and beaten up in the bathroon.

    The school told him to just tell a teacher when it happened and my dad told him to punch the kid, hard.

    You could tell the school didn't like how "those Americans" dealt with their problems.

    LOL Tough crap; we own the world! Not that we have an attitude or anything. :]

    Milehimama, I probably AM nuts. That, or I'm a visionary with this really forward idea or sometin'.

    Ok, I'm just nuts. How dare I think that I know more than the lady who went to the special ed workshop? LOL

    Tammy, it just boggles me. Just boggles me. Even if a deaf child had cochlear implants, IMO he's still deaf and should be a part of "deaf culture" and learn to sign etc. He can be part of the hearing world, too.

    So... with autism...

    We need some acceptance, too! That does NOT mean I don't want Woodjie to speak or be able to sit in a restaurant someday. Or mayyyybe even do the airplane thing.

    Ok, that's too far ahead. I can always leave the restaurant. :]

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  9. Daddy Forever, I didn't mean to ignore your comment. I think this statement is one of those YEAH of COURSE sorts of things.

    But how to implement that in an institutional setting with dignity n stuff. :]

    I wouldn't wonder if public schools couldn't be more like those tutoring places where you come in and get help for stuff. Just an idea in the back of my head that I haven't developed fully.

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  10. Mrs. C, I wish I could just snap my fingers and make everything better. But I can't.

    And, I just wanted to note: Cochlear implants are a huge controversy in the deaf community. My Sign Language teacher in college is heavily involved in deaf culture, and this is a sticky issue.

    Lord, I ask that You will continue to provide grace and wisdom in this situation. Give Mrs. C and D the insights they need to best care for their children. Provide the resources, the insights, and the support. Amen.

    Hang in there!

    ~Luke

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  11. Thanks, Luke!

    And I know it's a sticky issue in the deaf community, but I was trying to illustrate that even though the kid can hear, that he's still deaf? Acceptance of that ought to be a given. And I think moms and dads can decide what's best for their family/ children. :]

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  12. [Another thing y'all should do is called "listen to the experts." ]

    As usual, I am a day late and a dollar short in including myself in this conversation in a meaningful way, but...

    Marissa's principal called me once and said that they were at the end of their rope. They had tried EVERYTHING and Marissa still was [whatever]"

    And, I told them, "Gee that is funny. Because this summer (after saving for more than 18 months to cover the cost of the exam because my insurance company wouldn't cover it), I brought Marissa to see a developmental neuropsychologist. According to the report I got in the mail, the school got a copy of the findings from the University Hospital. And, just in case it was filed in her record without anyone on the IEP team actually seeing it, I made copies of it and distributed it at the last IEP meeting. In that report, the psychologist listed five specific educational interventions that Marissa should have and you all haven't implemented even one of them."

    And, people wonder why I quit a good paying job to home school.

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  13. Oh. My. Word. Would I be mad.

    Julie, what kills me is that they can give a cheap-o education to our kids but they're SUPPOSED to give a "free and appropriate" education, no matter the cost.

    Once again, I think the funding for helping people with disabilities should follow the FAMILY, not the school district in which the child happens to reside. The schools, instead of going, "What's appropriate for Marissa?" probably just went, "Well, what do we already have lying around here that we could patch into Marissa's IEP and call it good?"

    Yeah. I mean, I'm all for efficient use of resources, not reinventing the wheel and blah blah blah, but sometimes ya just have to do something different.

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