Hard Won Wisdom

The demonization of childhood ==For my "special readers" I return

2011-06-14T05:47:00.000-04:00

Have you ever wanted to scream so loud, the whole world can hear you?
I have, and it's a pretty long story, so get ya a cuppa joe and sit down.
If it's after 12:00 noon where you live, I won't tell anybody if you grab a beer...

BUT, be ready to be deeply, deeply offended if you look to psychiatry to "save" your children. If you do, remember...it ain't about you. Allow me to re-iterate...IT AIN'T ABOUT YOU...don't make me have to slap some sense into you.

By God, I will....

*****************************************************************

I'm NOT cynical...I'm angry! Mostly at myself. Learn from my mistakes, and save yourself the heartache

My neice is on Facebook. She's kinda bent out of shape, talking obliquely about her son and a mysterious "label". I send her a note.

"It's bi-polar, isn't it?"

"How did you know?"

"Because you're strong enough that I knew it had to be something scary to throw you off your game."

ADHD is for sissies. Autism, it's overdone...

Now bi-polar, there, ya got something. Numbers have gone up 4000% for children. Next thing ya know, it's gonna be "Bi-polar Speaks". Instead of a puzzle piece, it'll be a bicycle, or a bow-tie, or something. Two eyeballs going cross eyed.

And when that gets old, it will be something new. But, miraculously, there will be a drug for it.

Oh, no you didn' go there....

LISTEN; I KNOW THESE ARE SERIOUS DISEASES. There are people affected with them that probably belong in institutions, because at the present time we just don't have a clue of how to deal with serious mental diseases. Thorazine was supposed to clear out the mental wards as evidenced by this advertisement from a psychiatry magazine in the 1950's. In hindsight, we all know how that worked...

We can drug them into a stupor, but it doesn't change the crossed connections in their brains. My son's birth father was killed by a man undergoing a bi-polar episode. Don't YOU even go there. He may have even been on medication at the time, I don't know.

But we are placing these labels on a generation of children. For some sick bastards, "early intervention" means catching children early and bombing them with dangerous drugs. Professor Patrick D. McGorry, the "Australian of the year" is bought and paid for by the drug industry in Austrailia, and is fighting for early interventions so that kids can be drugged at younger and younger ages. If we don't wake up, that's where this is going.

What the hell is that going to do to baby brain cells? We don't know, because there are no long term studies. There are barely studies on children, whose make-up may be totally different from that of an adult, because it is in growth mode. It is unethical to blindly give children treatment in studies before the work has been done on animals, and it is very regulated. Yet, post acceptance by the FDA, drugs are giving indiscriminately (off label) and a LONG TERM study is one year, although the children may be given a drug for a lifetime for a non-life threatening condition.

It could be a tremendous mistake, you know? We don't know what we are doing.

The greatest "overcomer" of brain anomolies is inherit in the brains ability to change, it's plasticity Most of these kids are going to grow up and become contributing, possibly in outstanding ways, of society. Thomas Edison's mother was told he was "too scattered to learn" by a teacher, so she took him home and schooled him there.

Today? No doubt. Ritalin for Tommy.

There are no long term or studies of anti-psychotics, and none will be done because it is unethical to treat a child with something so serious in a study...but they will be given to children off label all over the world . Science, in all it's glory, doesn't have a clue as to why ritalin works. The "gold standard" of treatment for ADHD was a serendipitous finding in the 1930's. (Link to BMJ doesn't seem to be available at this time. Guttmann, E. & Sargant, W. (1937) Observations on Benzedrine. BMJ, 1, 1013 -1015). The safety studies usually consist of weeks, not months or God help us, life time use.

When my son was diagnosed with autism, I thought he was going to be severely retarded. I didn't know he would be gifted. I thought his behavior was so anomalous that he needed drugs to go to school. In the last 3 years of homeschool....NO RITALIN. In fact, he NEVER took it in the evening, weekends, holidays or summer vacation. He took it for 2 years before we ever saw him on it. We hated it that much.

And you thought Dr. Spock messed up us oldsters.

Pfffftttt....children's play.

LISTEN UP,PEOPLE....some kids are hard to raise. Really, really, really hard. You CAN drug them into compliance, and drug the creativity right out of them. (Listen to the TED talk below, you'll never see education the same way). You can turn them into zombies who will never know their gifts.

Ask my sister Sandy, who raised 3 ornery boys, before her easy daughter came. Nearly drove her up the wall. MAYBE, JUST MAYBE, it's the parents who need medication. She'd have enjoyed parenting a lot more, I'm sure. When I started medicating my son, in the ninety's, she told me that she could have chosen to medicate her children, but she chose not to. Today, they are all successful college graduates, living in fear that their own children will be just like them (every parent's effective curse upon their children).

When I graduated from college with a degree in the early '80's, a total of 6% of children were considered "special needs"--the Dyslexias, Minimal Brain Damage (the ADHD of it's day), Autism, Cerebral Palsy, Mental Retardation, Blindness, deafness...everything.

Now, it's 18% or more.They tend to skew the numbers for "No Child's Behind Left"...and thus bear the brunt of schools failure. Children who don't learn typically bear the brunt of schools failures...Do you hear what I'm saying? No wonder we drug 'em. Ben's teacher saw this coming in the beginning of NCLB 10 years ago. Why is it when a "school" fails to teach a child it is the childs fault, and not the schools. Sure it's hard...but we gotta blame somebody, so why not the kids? (the blame game, good reading! Second most important link here.) So parents/schools/administrators scramble to make "them", our tender-hearted kids, fit the mark. Therapy, special schooling, tutoring, research, quack medicine...it is a tremendously big business, and getting bigger. Everybody and their dog is making money off of "special needs" children in one way or another, or making money for Autism Speaks. Every time I go to a store and see that puzzle piece I want to puke. That's what good marketing will do for you. I'd put it here...but the Wrights tend to threaten to sue people who use their brand. So I'll use a stand in.

"autism squeaks, tee-hee." SCARY, huh?

And you know that study sponsored by Autism Speaks in Korea that assumed 1 out of 38 kids should be labled autistic. They went into the God-blessed schools, found suckers to take a test, and then "postulated" the assumed number who should be labeled, and then wondered why the parents fought them. Yeah...Wright!

By the way, when I first started medicating my son at age 5 to go to school and stay out of special ed classrooms...babies as young as 6 months were being given medication for behavior. Why the hell would a 6 month old baby need to focus???? That was 12 years ago. I can't imagine what it is now. And this is not for serious, life-threatening disease, but to control "behavior", as defined by psychiatrists. They hold the power of labels over your children. Which is better, to be called a brat, or to be called an aspergerian and be considered mentally ill and be medicated or trained like an animal in "social behavior" ? (Do you know any of the stories of successful autists? Not one would give up their autism for 'social awareness' . Their autism is what made them successful. The word they used to be called was "gifted". You know, "scary smart"?)

Psychotic drugs for children, as dangerous as they are, are the new "ice pick surgery". Do you know the inventor of the lobotomy got a Nobel Peace Prize for his work? Are we any smarter now??

And you know what the killer is? The DSM % (DSM 5, diagnostic and statistical manual of mental diseases,working on upping the numbers, replacing the DSM $, or DSM 4, self explanatory) is removing the truly autistic, kids with mental retardation, self-injury, movement disorders......and placing the moniker of autism solely on the backs of kids who have been making it for generations in the regular classroom. The geeks, the nerds, the dummies, the rummies...are now "mentally ill". Like they needed insult added to injury. What was once considered a learning difference, dyslexia , is now "caught early" as autism, in my son's case. I'm so pissed I can't see straight. (Maybe I'm bipolar...)

Yeah, I know, it's a serious mental disorder...but when 15% of boys are on medication, with numbers increasing every year, it's beginning to feel a lot like a witch hunt.

I AM NOT A SCIENTOLOGIST. FIRST IDIOT THAT PUTS THAT IN THE COMMENTS GETS IT RIGHT UP THE SIDE OF THE HEAD...Nimnuts!!!

Sure, I'm being emotional. But lookie (or listen) here to one of the doctors (Dr. Allen Frances, God bless 'em) responsible for the diagnosis of bi-polar in the DSM 4. Also, listen to how the mother totally ignores his plea that too many kids are being medicated for being difficult to raise. He's being very, very reasonable in my book. I don't see that much among scientists (cough, cough, BC, cough). Fear of mental illness does not lead to good parenting.

Look here, at a scientologists son who was labeled with "undiagnosed autism" after his death, John Tavolta's son Jett. Notice, he did not die of autism. He died of a SEIZURE. Although autism and seizures are frequently intertwined, autism is diagnosed by BEHAVIORS. Other than genetic maladaptions of the brain that cause those behaviors like Fragile X, Neurofibramatosis, Tuberous Sclerosis, or poisoning in utero by the drug used for epilepsy known as valproic acid , or by a virus, the mother's contraction of Rubella while pregnant....there is a whole lot of diagnosis going on that is "shadow syndromes" that make a lot of people a lot of money.

Shadow Syndromes ~Delusion paranoid schizophrenic with an attendant persecution complex = Jesus of Nazareth

America's schools, these great bastians of learning, insist on things being made easier for them to not teach our children by drugging greater and greater numbers, instead of doing the hard work of teaching that was done in the past, that kept us up at #1. You have to wonder if we aren't drugging some of our greatest minds. Genius and "mental disorders" go hand in hand. Seems you can't have one without the other. In the past, some parents created special schools for their children who learned differently. Now, many, many parents pull their kids out of public education and HOMESCHOOL to avoid a lifetime label or drugging.

Karma is a bitch for the schools, isn't it?

The most important link you could hit today is right above you. Forget all the rest of this crap!

Look at this. This is where I started to wake up. What do you think causes Autism? Doesn't it look like CAPITALISM???

I mean, you don't have to be a rocket scientist. You can't make this shit up. My son was labeled autistic when he was 3 years old. The ONLY expert I listened to was Temple Grandin. She led me much more lovingly through trecherous waters than the psychiatrists Ben had. Except for the one who was ADHD himself. He used to tell my son he was the hardest worker he knew. And school is very, very hard for our kids who think differently, who think right-brained, visuallly, as some describe it. These Hunters in a Farmers world.

[[Temple Grandin (famous autist) says that the rocket science division at NASA is a "sheltered workshop for the socially impaired".]]

Anybody that doesn't recommend this shall be cursed (or "blessed" :))with a difficult child. I ain't messing around here, people.

I know y'all hate Dr. what's his butt of Focus on the Family. But he said one thing that I've never forgotten. I guess even fools can speak great wisdom.

"If your kid is driving you crazy, that's their job. Some kids are just really, really good at their jobs"

Get a life, get a sense of humor, give your kid a break.

If things don't work out at school, as seems to be the case for more and more children...homeschool. Or suck it up until age 16 and get a GED or go to Tech...my son is doing that without a GED or high school diploma. We don't teach to kids who learn hands on. We teach to the science/math majors and fail the rest. Look at these 15 successful people who were labelled "learning disabled". Seems they may have been "school disabled" because they did pretty damn well for themselves. They made the cut because of who they are, not in spite of it.

I've got a new home.

2011-05-14T05:48:00.001-04:00

All two of you that read me.

To Autismo:

"PLEASE ACCEPT MY RESIGNATION. I DON'T WANT TO BELONG TO ANY CLUB THAT WILL ACCEPT PEOPLE LIKE ME AS A MEMBER".

and to who ever believed in me at dot com for moms....God bless you!

Goodbye, cruel world

2011-05-11T15:22:00.000-04:00

Rosabw has disappeared. I am now ragette at blogspot dot com.

Numbers never lie....

2011-05-10T09:46:00.000-04:00

SPOOKY AUTISM NUMBERS

http://www.wired.com/wiredscience/2011/05/south-korea-autism/

Autism rates increase.....wwwoooooooooo.....ONE IN THIRTY EIGHT O MY GOD!!!!!!!!!
It's all the rage in the "Autism Files" (TM)
Read all about it...

Autism: 1 in 4…Give it, ah, about…Well, hell…anyone a mathmetician around here? What was it, 4 in 10,000 about 20 years ago? As it becomes more lucrative, it becomes more common;

Let’s see… 1 out of 38 = .026

4 out of 10,000 = .0004

That an increase of 6500%

The stock market went from about 3,000 in that time, to about 12,000 today. That’s only an increase of 400%

(Edited to delete smart-ass comments)

Now…to figure out how long from 1 in 38 to one in 4…

6500% increase in 20 years is 325% a year.

God, this is getting hard…

4 is 9.5% of 38…..It would have to increase about 10 fold, or 1000%

Let’s see…1000 is to x as 6500 is to 20

6500x = 20000… lets see…ABOUT THREE YEARS!!!

It’s math, people. The universal language. AND BY THIS UNIVERSAL LANGUAGE< I figure this is STUPID!!!!!!!

The State of Psychiatry, 1956

2011-05-10T07:32:00.000-04:00

http://vintage-ads.livejournal.com/2633620.html

Side Effects of Thorazine - for the Consumer

Thorazine

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Thorazine:

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Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest or throat; swelling of the mouth, face, lips, or tongue); changes in breasts; changes in menstrual period; changes in vision; chest pain; chills; confusion; difficulty swallowing; difficulty urinating; drooling; extreme tiredness; fever; inability to move eyes; involuntary movements of the face, mouth, tongue, or jaw; jitteriness; lip smacking or puckering; mask-like face; muscle spasms of the face, neck, or back; prolonged or painful erection; puffing of cheeks; rigid muscles; seizures; shuffling walk; skin discoloration; sleeplessness; sore throat; stiff arms or legs; tremors of hands; twitching or twisting movements; weakness of arms or legs; yellowing of the skin or eyes.

This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects. To report side effects to the appropriate agency, please read the Guide to Reporting Problems to FDA.
http://www.drugs.com/sfx/thorazine-side-effects.html

Thanks for looking

The Village Idiot

Been there, done that

2011-05-09T22:12:00.001-04:00

http://www.iamlearningdisabled.com/

See this guy? I know of him from my trips to a big blog. He's really funny and kind. His mom started a school for him, and kids like him, that still is in operation. He is a statistician. He has his doctorate. He is married, and has 2 children.(I'm pretty sure 2 kids.) He has a Non-verbal Learning Disability. He has a son who also has some troubles.

Now, I don't mind labels when they don't imply mental illness. Ben is Dyscalculia, and Dysgraphic, which makes it hard for him to memorize his math tables and write. He is not just being lazy. Weird, but he is gifted in math. Go figure. He has Dyspraxia, which makes it hard to use all his muscles together...he's kinda clumsy, like his mama. I don't mind people giving reasons why some things are extra hard for them. You teach a child the way they learn. If the public school doesn't do it, you do it at home. Your kid might grow up to be a doctor, like Peter, but he's got to have a base to grow on.

Peter wrote quite a good story about his differences, his "disabilities". He also will go on (at length) about his abilities. (I kid.) I don't mean to be unkind, but if you've made it this far, you dang well better click on this link and read his story. http://www.associatedcontent.com/article/2333808/abled_and_disabled.html?cat=72

Interesting, huh? Abled and disabled. Both---not just disabled.

That's the way I feel about my son. He has "issues" beyond his control that are gonna make it a little bit harder for him to make it. But he will make it. I have no doubt. I believe in him. Besides, he reminds me so much of an old friend who used to have so much trouble in school...repeated 2 grades. Never went to college. A millionaire.

It could happen.

I'm sure when Peter went to public school in his younger years he was seen as disabled. Only. I guess they couldn't teach him the way he learned.

Teachers are the next best thing to mothers. But mama's know their children.

Trololo Sing Along, with SUBTITLES!!!!

2011-05-08T19:45:00.000-04:00

If I've had to listen to this every damn day for the past 2 weeks, well,

I thought of you, codester, if you're "listening".

Hey, y''all--Michelle D. in Atlanta!!!

2011-05-08T19:42:00.000-04:00

If you live in or near Atlanta

Atlanta Autism Consortium (AAC)Upcoming MeetingsPast MeetignsPresentations/VideosAbout AACMembers DetailsMailing ListHomeJune 2011 AAC meeting

Wed, 04/13/2011 - 09:38 — agoursa

Start: 06/09/2011 5:30 pm

End: 06/10/2011 4:00 pm

Timezone: US/Eastern

Topics: Exploring the brain of autistic individuals & Intervention research in Autism.

Dates:

Thursday, June 9th, 5:30 – 8 pm;

AAC monthly meeting PART 1– Michelle Dawson: “Why is this brain autistic? Exploring Cognitive Versatility in Autism”

Friday, June 10th, 2:00 - 4:00 pm

AAC monthly meeting PART 2– Michelle Dawson: “Autism Intervention Research: Good and Bad News”

Location: Marcus Autism Center, Second floor Conference room.

-> Featured speaker:

Michelle Dawson,

Affiliate Researcher

Clinique Specialisée de l’Autisme

Hôpital Rivière-des-Prairies

Université de Montréal

-> Biography

Michelle Dawson is an autistic researcher affiliated since 2004 with Laurent Mottron’s lab at the University of Montreal. Her research interests include learning and intelligence in autism, the autistic cognitive phenotype, how cognitive processes work together in autism, and science- and ethics-based approaches to autism.

-> Thursday June 9th (5:30 - 8:00 pm): Why is this brain autistic? Exploring cognitive versatility in autism

“We do not know very much about autism and autistic people,” wrote a famous scientist back in 2004, and things have not improved much since then. If sheer quantity of scientists, scientific research, scholarly books, and so on, was in itself effective, then our ignorance about autism would have vanished long ago. But this is not what has happened. Deficit-based accounts of autism have always been dominant, and these models have certainly been both powerful and popular. But they have also fallen short where it counts: they have not made good predictions about the abilities of autistic people. Meanwhile, autistic cognitive strengths have been either ignored altogether or promoted as evidence for yet more autistic deficits. In the circumstances, perhaps no one should be surprised that autism remains poorly understood. How and why did this happen, and how can we do better?

-> Thursday June 10th (2:00 - 4:00 pm): Autism intervention research: Good and bad news

The quality of autism intervention research has an enormous impact on the daily lives of all autistic people, whether we do or do not receive any specific kind of intervention. At the same time, well-established research standards that have greatly enhanced the well-being of nonautistics are routinely denied to autistics. For example, good experimental design in autism intervention research is often claimed to be impossible as well as harmful to autistics; and quantity of research is often promoted as definitive, regardless of quality. This presentation will explore these and many related issues, identifying current trends, providing examples, and enumerating the consequences of good and poor quality autism intervention research.

.Calendar..

FTS

2011-05-08T15:33:00.000-04:00

http://seattleaspergers.org/diagnosisandtherapy.aspx

One stop money laundering center for parents of "autistic" children. From your pockets to ours!!!

Oh, please people...your child is fine! Unconditional love will help much, much more than any of this.

They are not monsters. They are not mentally ill. They are not socially inept (they just have to find their own birds, and when you are 1 in 100, it's kind of hard to do. Go to wrong planet. There's LOTS of kids like them there. Or go to You tube and show them Monty Python for social skills.

This guy has been known to lead the downfall of the Soviet Union AND cure autism....for FREE

Or you can laugh. True laughter can only be shared. And "auties" have great, great senses of humor when they feel comfortable. \

They are absurdists....a new form of humanity brought about from watching too much television and going to psychiatrists.

Comic Relief:

2011-05-08T10:31:00.000-04:00

Ben says this song alone is responsible for the fall of the Soviet Union.

Blame for Pertussdis deaths, according to AMA

2011-05-07T13:04:00.000-04:00

It's those damn irrational parents...or...maybe it's the doctors who are afraid they won't be paid.

Why do doctors want children to die?? The American Medical Associations blames parents, and then spanks some of their naughtier members. It could be either, but let's go with the parents, first. Maybe nobody will notice....(and nobody did!!)

If you can't afford an immunization...well...

http://www.ama-assn.org/amednews/2010/07/26/prl10726.htm

What it all boils down to...

2011-05-07T11:53:00.001-04:00

http://rationalwiki.org/wiki/Rationalism

Where rationalism can fail

Being right can seriously fail to charm people, and therefore to convince them. (Or to phrase it another way, when dealing with people, ethos and pathos are more useful than logos.)

You can gain negative charisma and really piss people off.

It's less likely to get you laid than carefully-applied stupidity.
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Rationalist jokes by rationalists

http://lesswrong.com/lw/21a/free_copy_of_feynmans_autobiography_for_best/

You Belong to Us Now....Bwwwaaaahhhhhhahahahahahah!!

2011-05-05T21:54:00.000-04:00

http://www.medicalnewstoday.com/articles/224220.php

God dang psych's going door to door for business.

We're autistic? Oh? Well, now....Let me call me mum and tell her the good news!!!

No shit?

2011-05-05T14:43:00.000-04:00

What a difference 8 years makes.

http://www.ncbi.nlm.nih.gov/pubmed/12806268

Curr Opin Pediatr. 2003 Jun;15(3):339-43.

How common are gastrointestinal disorders in children with autism?

Kuddo T, Nelson KB.

SourceNeuroepidemiology Branch, National Institute of Neurological Disorders and Stroke, Bethesda, Maryland 20892, USA.

Abstract

We could identify no report that describes the prevalence of gastrointestinal disorders in a representative group of children with a diagnosis of autism compared with appropriate controls. Thus, we found no evidence upon which to base a confident conclusion as to whether gastrointestinal symptoms are more common in children with than without autism. However, the frequency of gastrointestinal symptoms observed in population-based samples of autistic children indicate that gastrointestinal problems are not nearly as common in children with autism as reports from pediatric gastroenterology clinics suggest.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3072352/
BMC Gastroenterol. 2011; 11: 22.

Published online 2011 March 16. doi: 10.1186/1471-230X-11-22. PMCID: PMC3072352

Copyright ©2011 Adams et al; licensee BioMed Central Ltd.

Gastrointestinal flora and gastrointestinal status in children with autism -- comparisons to typical children and correlation with autism severity

James B Adams,1 Leah J Johansen,1 Linda D Powell,1 David Quig,2 and Robert A Rubin3

Conclusions

The strong correlation of gastrointestinal symptoms with autism severity indicates that children with more severe autism are likely to have more severe gastrointestinal symptoms and vice versa. It is possible that autism symptoms are exacerbated or even partially due to the underlying gastrointestinal problems. The low level of SCFA's was partly associated with increased probiotic use, and probably partly due to either lower production (less sacchrolytic fermentation by beneficial bacteria and/or lower intake of soluble fiber) and/or greater absorption into the body (due to longer transit time and/or increased gut permeability).

2011-05-05T10:30:00.000-04:00

Looking for cures? So is "medicine". Because they have no answers, I guess they are taking another look at what is considered crazy parents ideas. Can't come up with any new ones of their own.

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Postdoctoral Research Scientist

Columbia University

Summary Description: The Department of Medicine at Columbia University, Division of Digestive and Liver Disease seek highly motivated Post-doctoral Research Scientist. Candidates will conduct translational research to investigate immune mechanisms in neuropsychiatric and developmental disorders. Specific areas of focus include celiac disease/gluten sensitivity, schizophrenia, autism, and ADHD. Demonstrable experience in protein purification and analysis, cell culture, small animal surgery, microarray work, and immunology and molecular biology techniques will be desired. The laboratory is located on the medical campus of Columbia University in New York City, and has on-going collaborations on a number of exciting projects with investigators at the National Institute of Health, Cornell University and Johns Hopkins University..

Minimum Qualifications: Degree in immunology, cell biology, neuroscience or related field. Experience in basic biostatistical analysis, outstanding record of independent and collaborative research; exceptional motivation and a strong desire for a career in biomedical research; and excellent written and verbal communication skills.

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Child abuse by any other name: research-based intervention protocols...sounds like ABA

Kennedy-Kreiger Institute of Baltimore, Maryland needs:

JOB ID 60183

This Research Assistant I will implement research-based intervention protocols for children with autism spectrum disorders. Will implement research protocols in classrooms (1:1 contexts), homes, and lab, as well as prepare teaching materials, provide communication and training to parents, collect data on the research participants' progress and intervention responses, enter and code data, archive data, and assist with other research related activities. The Research Assistant I will have experience working with young children with autism.

Responsibilities:

Under the direction of the Research Coordinator and other senior research staff, implement the research treatment protocols with parents and children with a high level of fidelity.

Collect data on children's and parents' response to intervention.

Code and score assessment and intervention data.

Maintain high levels of inter-rater reliability on all coding protocols

Archive and enter data.

Create therapeutic materials.

Set up and break down intervention settings.

Prepare video clips to illustrate intervention, developmental, and diagnostically relevant aspects of behavior.

Consent families into the research studies using IRB approved procedures.

Videotape research assessment and intervention sessions.

Attend research meetings.

Qualifications:

EDUCATION:

Must have some college classes in psychology, education, or related field. Bachelor's degree preferred.

EXPERIENCE:What, no degree??

Must have experience with young children with autism and implementation of treatment protocols.

RELATED TRAINING:

Must have at least one year experience providing supervised evidence-based intervention to preschoolers with autism spectrum disorders .

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Oh, God, not the mice again....

Research Technologist

Johns Hopkins University

General Description:

The focus of the research of the Laboratory of Molecular and Cellular Neuroscience is to elucidate the molecular basis of communication between neurons in the adult mammalian brain, and explore implications in neurological and psychiatric disorders including Autism and Alzheimer's disease.

Will contribute to the research in the field of synaptic plasticity. Will perform a variety of techniques including molecular/cellular biology and biochemistry (western blotting, immunohistochemistry, PCR) and behavioral experiments focused on the novel exploration paradigm. Will be responsible for maintaining transgenic mouse lines (breeding, genotyping, colony maintenance) relevant to these studies. Capable of working independently, ability to multitask and must have good communication skills. Qualifications:

Bachelor?s degree in biology, chemistry, or related field required. Some related post-undergraduate work experience preferred.

Experience with general lab techniques, computer skills, and willingness to work with mice required. Experience with mouse handling/colony maintenance a plus.

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Staff Scientist I

Company Name:

Kaiser Permanente

Job Title:

Staff Scientist I

Note yellow underlined: You work for US, baby....

Job Code:

051292

Location:

Oakland, California

Job Description:At Kaiser Permanente Northern California, you'll join a team of health advocates who share your passion for helping people. From our laboratory professionals to our RNs to our physical therapists-and everyone in between-we work together to help our members achieve their best level of wellness. And you'll be inspired to do the same. Whether you dream of sailing the bay, hitting the slopes, hiking Yosemite, attending the opera, or strolling the vineyards, you'll discover the cultural and recreational diversity that makes Northern California one of the most desirable places in the world to live and work. Northern California's largest health plan, Kaiser Permanente provides you with the resources, scope, and opportunity you need to realize your goals. Come see for yourself.

The Kaiser Permanente Division of Research invites applications for a full-time, limited term Staff Scientist position to join a vibrant research team focused on identifying genetic and environmental risk factors for autism spectrum disorders, and understanding patterns of detection, diagnosis, and utilization of health services for ASD. The Staff Scientist will work in collaboration with Dr. Lisa Croen, Sr. Research Scientist and Director of the Autism Research Program. The staff scientist will be expected to analyze data, write papers, prepare grant proposals and help coordinate a variety of studies conducted by the Autism Research Program. We seek applications from persons with a PhD in epidemiology, health services or related field. Preference will be given to applicants with strong analytic and writing skills and a demonstrated ability to write successful grant proposals and publish papers. Knowledge of children with autism or other psychiatric/developmental disabilities is preferred but not required. The position is funded through multiple grants for a minimum of 2 years.

Essential Functions:

* Designs, develops, & directs well-defined research w/ minimal supervision from the DOR Research Scientist II or III

* Prepares grant proposals, internal reports & publications independently & collaboratively

* Provides consultation & directs study design, analysis plans & interpretation of study results to TPMG, KFH/P managers & committees as discussed w/ DOR Research Scientist

* May consult w/ local, state, & national voluntary & governmental agencies, or w/ scientists at other institutions

* Provides consultation & direction to programmer analysts w/ regard to data management & analysis strategies

* Presents papers at national scientific meetings; teaches &/or reviews papers for national journals

* Seeks consultation from senior scientists for specific scientific & administrative issues

Other Duties: As part of a larger collaborative team, and under the supervision of Dr. Croen, the Staff Scientist will,

* Take leadership for a major component of a research project

* Assist with project management, including oversight of staff

* Analyze data from a range of sources using appropriate statistical techniques, using SAS and other statistical packages

* Contribute to and draft scientific manuscripts for publication

* Liaise with stakeholders and other experts in the field to ensure validity and applicability of research findings

* Facilitate the uptake of research findings by assisting in presenting research results to key audiences and developing materials that support the translation of the findings into practical outcomes

* Contribute to and develop new research grant proposals

Basic Qualifications:

* Doctoral degree (Ph.D., Dr.PH, MD, Sc.D) in epidemiology, health services research, economics or related field or equivalent training & mastery

* Highly competent in the statistical techniques, study designs & general research methods commonly used in epidemiological & health services research

* Able to lead a research team, w/ mentoring from DOR Research Scientist II or III & to directly supervise designated team members such as data analysts or research associates or project managers

* Must be able to work in a Labor/Management Partnership environment

Preferred Qualifications:

* Advanced research training

* Experience with statistical methods appropriate for epidemiological studies

* Strong set of analytic and problem-solving skills

* Broad understanding of epidemiological concepts

* Effective communication both verbal and in writing

* Demonstrated ability to work in a collaborative team

* Experience with project management

The successful applicant will have opportunities to further develop her/his epidemiological and analytic skills in an environment supported by an internationally recognized senior scientist working in a unique institutional setting like KP.

++ NOTE: This position is expected to continue for 2 years work or pending continuation of grant/contract funding ++ General Information Job Category:Pharmaceutical

Grant-writing....hmmm....who is paying for this?

*****************************************************************************
Reiterating: bowel immunity...food allergies?? Feingold was full of it, remember??

Postdoctoral Research Scientist

Columbia University

Summary Description: The Department of Medicine at Columbia University, Division of Digestive and Liver Disease seek highly motivated Post-doctoral Research Scientist. Candidates will conduct translational research to investigate immune mechanisms in neuropsychiatric and developmental disorders. Specific areas of focus include celiac disease/gluten sensitivity, schizophrenia, autism, and ADHD. Demonstrable experience in protein purification and analysis, cell culture, small animal surgery, microarray work, and immunology and molecular biology techniques will be desired. The laboratory is located on the medical campus of Columbia University in New York City, and has on-going collaborations on a number of exciting projects with investigators at the National Institute of Health, Cornell University and Johns Hopkins University..

Minimum Qualifications: Degree in immunology, cell biology, neuroscience or related field. Experience in basic biostatistical analysis, outstanding record of independent and collaborative research; exceptional motivation and a strong desire for a career in biomedical research; and excellent written and verbal communication skills.

Preferred Qualifications:

As a member of the National Collegiate Athletic Association (NCAA) and the Council of Ivy Group Presidents (Ivy League), it is imperative that members of the Columbia University community, in all matters related to the intercollegiate athletics program, exhibit the highest professional standards and ethical behavior with regard to adherence to NCAA, Conference, University, and Department of Intercollegiate Athletics and Physical Education rules and regulations.

Columbia University is an Equal Opportunity/Affirmative Action employer.

88**************************************************************************88

ONCE AGAIN: autism, the NEW cash cow!!!
Aren't epidemiological studies the CDC's job?

Company Name:

Kaiser Permanente

Job Title:

Sr. Consulting Data Analyst / Data Consultant

Job Code:

010470

Location:

Oakland, California

Job Description:At Kaiser Permanente Northern California, you'll join a team of health advocates who share your passion for helping people. From our financial professionals and IT team members to our RNs and physicians on the front line of care-we work together to help our members achieve their best level of wellness. And you'll be inspired to do the same. Whether you dream of sailing the bay, hitting the slopes in the Sierras, hiking Yosemite, attending the opera, or strolling the vineyards, you'll discover the cultural and recreational diversity that makes Northern California one of the most desirable places in the world to live and work. Northern California's largest health plan, Kaiser Permanente provides you with the resources, scope, and opportunity you need to realize your goals. Come see for yourself. Hard sell...

Under general supervision, this position exists to assist the organization in making strategic data-related decisions by analyzing, manipulating, tracking, internally managing, and reporting data. This position functions both as a senior analyst and as a high-level statistical analytics programmer.

Essential Functions:

* Designs and enhances databases (mmh...mmmmmhhh....pffffttttttt....LOL!)

* Designs effective and user-friendly menu systems

* Develops accurate, easy to read, & useful information reports

* Designs and generates tracking and monitoring tools

* Participates in the development of outcomes and process measures, including technical specifications to enable population measurement, guideline implementation, and evaluation

* Tests complex statistical routines using macros, vendor software, and software written by self and others

* Tests and maintains data integrity

* May assist with sophisticated (i.e.,not easily deciphered) statistical models and forecasting tools (Forward looking statements to rein in investors....) using these databases

* Assists with the definition of complex multi-dimensional healthcare issues and develops time tables/processes for decision making

* May translate needs, issues, and ideas into effective strategies and action plans

* May formulate specific implementation plans and evaluates the effectiveness of actions/programs implemented.

* Develops creative alternative solutions (does that mean, "lies", because when my son get's "creative"....)

* May assist in the determination of goals and priorities with team, clients, or project management sponsors (must know who is buttering their bread........)

* May communicate results/recommendations to project sponsors, clients, and various senior level audiences (including physicians for TPMG departments)

Acronym Definition

TPMG The Permanente Medical Group

TPMG Tout pour Ma Gueule (band)

TPMG Tidewater Physicians Multispecialty Group

TPMG Toronto Photography Meetup Group (Canada)

TPMG The Provost Marshal General

TPMG Test Platform Management Group

Basic Qualifications:

* 3 years programming in SAS, SQL, VBA, net, or equivalent statistical analytical programming language

* Experience with analytical manipulation and interpretation of large databases required

* Experience with MVS/TSO operating systems preferred; if not, experience with another mainframe operating system required

* Project management experience preferred.

* Typically, 2+ years of related analytical, consulting, & healthcare experience preferred

* Bachelor of Arts degree in Economics, Finance, Health Care Administration, Public Health Administration, Statistics, Mathematics, Operations Research, or related field required, or equivalent work experience in lieu of a degree

* Master's degree preferred

* Broad familiarity with medical practices, especially population management and process and outcomes measurement

* Knowledge of JCL strongly preferred

* Ability to express complex analytical and technical information to senior management or to audiences with clinical training

* Strong analytic and critical thinking skills, writing skills, communication skills, consulting skills, and ability to work within a team

* Microsoft Office skills required

* Must be an independent self-starter

* Must be able to work in a Labor/Management Partnership environment

Expected length of employment

This position is expected to continue for _1____ years work or pending continuation of grant/contract funding.

Other Duties :

*Analytical programmer to provide statistical analysis, programming, and data management support for autism epidemiologic studies.

*As part of an autism research team, the programmer will develop and maintain moderate to very large sized research databases for use in data analysis and tracking; perform data cleaning and editing of data files; conduct descriptive data summaries and multivariate analyses; prepare graphic presentations of data; maintain detailed documentation of programming, data sets, and analyses; and contribute to preparation of reports, presentations and publications.

Preferred Qualifications/Experience :

* Experience with statistical approaches to analysis and interpretation of large databases appropriate for epidemiological studies.

*At least one to three years experience with statistical programming in SAS; experience with SQL, macros, AF, SASGRAPH, and PROC Report.

*Experience with MVS/TSO operating systems; and/or equivalent experience with another mainframe operating system.

*Knowledge of Microsoft Office.

*Strong analytic and critical thinking skills, writing skills, communication skills, consulting skills, and ability to work within a team.

*Ability to express complex analytical and technical information to senior management or to audiences with clinical training. Must be an independent self-starter.

*Knowledge of JCL strongly preferred.

*Two or more years of related analytical consulting experience, preferably with healthcare experience.

*Experience with perinatal and/or autism studies a plus.

*******************************************************************************

Even Uta Frith says they're barking up the wrong alley here:

Career Opportunities at Mount SinaiReturn to the Mount Sinai Main Site

Return to the School of Medicine Welcome Find Jobs Sign In Job Detail

To apply for this Postdoctoral Fellow, 859 - Psychiatry, PD11-1294706 position, click on Apply for this position.

Email this job to a friend

Job Title: Postdoctoral Fellow

Full/Part Time: Full Time

Location/Affiliates: Mount Sinai Medical Center (Manhattan)

Department: 859 - Psychiatry

Requisition Number: PD11-1294706

Job Description:

As part of a dynamic neuropsychiatric genetics group that is actively searching for the genetic causes of schizophrenia, bipolar disorder, and autism; The successful candidate will have experience in biostatistical analyses and analyze genetic data derived from multiple internal and external studies. Ideally this candidate will interact with the PI to determine and execute a data analysis plan for studies involving genome wide SNPs, copy number variation, or next generation sequencing. We seek a highly motivated and dedicated M.D. or Ph.D. in genetics, bioinformatics or statistical genetics with excellent quantitative skills, proven ability to work well in a collaborative environment, The successful applicant will have strong training in statistics or biostatistics, data mining, and genetic analysis as well as experience with database management and computer programming

Job Qualifications:

Genetics, Biology, Computer Science or related topic

2 years in research enviroment

Strong communication and writing skills.

****************************************************************************

So there you have it. My cynicism knows no bounds. A skeptic's skeptic, that I am.....

Listen to your inner bum.

2011-05-03T16:06:00.002-04:00

http://www.ideachampions.com/weblogs/archives/2011/05/post_23.shtml

Drink to me, drink to my health!!

2011-05-01T12:05:00.000-04:00

If you are looking for any excuse, join me, join my son this day or any day. THIS is autism, mellow and contrite, as many tend to see it.. This is not how parents of children who literally have no voice see it. Grow up, little auties, and learn to love even those you do not understand. You ask as much of them, now ask as much of yourselves. You are not Autism Every Day. You are autism on the weekends and every third Thursday of the month.

Dear Mary:

2011-04-24T09:49:00.000-04:00

jDear Mary _Flashlight:

Something you said put a nickle in my nickelodean, so to speak....It got to be so long, I decided to make a new post of it. I will try to get back to your blog, if you have one, and read up on your situation so I don't end up asking a lot of unnecessary questions.

I'm just putting it out there. I don't necessarily believe it, in our case, either. I think it's probably a little environmental (Our family is made up of "little professors")AND genetic (I'm guessing his birth father was learning disabled, as in, not public school material---teaching disabled) AND possibly an inherited maladption to food/environment/whatever, because of the preponderance of epilepsy in people with autistic personalities. I say personalities because, for the most part, it is behaviorally diagnosed. Excepting Tuberous Sclerosis, Neurofibromatosis, Fragile X, neurological manifestations of the mother's Rubella illness while pregnant (which, thankfully, we don't see much anymore), and drug interactions with the fetus's development, as in valproic acid...we have no idea of the reason. The only thing we are “pretty sure” of is Bettleheim was wrong. That last one? It's mostly the mothers who believe that with all their hearts. Society, well, hasn't exactly caught up.

Interesting that the study seemed to be about the addition of DHA and AA, and lack there of,not breastfeeding necessarily.

What I do believe with all my heart, is that some forms of Autism may be totally diet related, and not in "poisoning" except perhaps by a genetic inability to process, say, amino acids like in PKU. Nature poisons those kiddo's. I had a friend whose husband was unable to remove iron from his body. He was slowly poisoned by iron andit led to much suffering and an early death. His children have been tested and can treat the disease with that knowledge, and not suffer as their dad did.

We are fearfully and wonderfully made, but there are as many maladaptions as there are people. We just don't know it yet.

But, Mary...I'm LUCKY. Ben is so mildly 'touched' it isn't even funny. I didn't know that when he was a kid.

I am thinking of kids who undergo regression. At about age 18 months. What changes????

It could be diet as it changes about then and kids eat Western food. I am SO allergic to Red dye 40 it isn't funny( I break out in hives. My eyeballs itch as we speak, as I accidently got some yesterday)...but it's put in everything, including hot dogs, apples...to make them more appealing...nasty! I've gotten to where I can recognize an unnatural color in salad dressings, check the label, and there's the culprit.

There could be an item in formula which is untolerable to some children, which slowly builds up. It isn't nature made. There could be a genetically maladaptive response to any food, as in PKU. It could be a natural personality trait, in the event of mild Autism, like my son....but I”ll be damned if I knew that when he was 3 years old. It was indistinguishable from any other type of autism, in my mind.

I guess I am not of a notion that severe autism and mild autism have anything in common but a similar developmental trajectory....so similar, in fact, that they are somewhat indistinguishable. Like a Neurotypical child, you don't call one with a profoundly low IQ severely neurotypical or severely normal.

Diarrhea of the brain...I'm sorry.

What are the specifics of your child? What age is he? Do you know whether he is mildly, moderately or severely afflicted? What do you believe was so extraordinarilly different about your child that IF your could bring it up to a scientist who would magically listen without judging...what would it be?

You know what mine would be? Recently, I've read that science has decided that fever/chills/puss whatever are the bodies response to bacteria/viral loads. That high temps and flowing mucous are a sign of an ACTIVE IMMUNE SYSTEM, not an inactive one. The child who never has a fever, than, has a poor immune system.

In Ben's first year, he NEVER had a temperature. Never. Except for the time I overdressed him for church and he heated up while waiting to get out to the car. I wish I could see a study of how some kids got better when they had fevers, when their immune system was in high gear...and how it relates to a possible low grade inflammation of the body system.

Like THAT's gonna happen. Science could give a fat rat's ass what I think. They didn't even notice our kids until it became lucrative (monetarily, prestigiously, whatever...), and the woo-ers were getting in on too much of the action. Bastards...

I guess it needed to be said. Sorry about the verbal blast.

Mhh-mhh-mhhn....Makes ya wonder...Is it in the milk???

2011-04-23T13:45:00.001-04:00

Is it infant formula that causes autism, or is it something in the breast milk that fights the weakening of the immune system.?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578554/?tool=pubmed

AbstractBackground

Although Autistic Disorder is associated with several congenital conditions, the cause for most cases is unknown. The present study was undertaken to determine whether breastfeeding or the use of infant formula supplemented with docosahexaenoic acid and arachidonic acid is associated with Autistic Disorder. The hypothesis is that breastfeeding and use of infant formula supplemented with docosahexaenoic acid/arachidonic acid are protective for Autistic Disorder.Methods

This is a case-control study using data from the Autism Internet Research Survey, an online parental survey conducted from February to April 2005 with results for 861 children with Autistic Disorder and 123 control children. The analyses were performed using logistic regression.Results

Absence of breastfeeding when compared to breastfeeding for more than six months was significantly associated with an increase in the odds of having autistic disorder when all cases were considered (OR 2.48, 95% CI 1.42, 4.35) and after limiting cases to children with regression in development (OR 1.95, 95% CI 1.01, 3.78). Use of infant formula without docosahexaenoic acid and arachidonic acid supplementation versus exclusive breastfeeding was associated with a significant increase in the odds of autistic disorder when all cases were considered (OR 4.41, 95% CI 1.24, 15.7) and after limiting cases to children with regression in development (OR 12.96, 95% CI 1.27, 132).Conclusion

The results of this preliminary study indicate that children who were not breastfed or were fed infant formula without docosahexaenoic acid/arachidonic acid supplementation were significantly more likely to have autistic disorder.

http://www.jlr.org/content/48/3/513.long

Lipid Res. 2007 Mar;48(3):513-7. Epub 2006 Dec 21.

Docosahexaenoic acid and arachidonic acid are fundamental supplements for the induction of neuronal differentiation.

Kan I, Melamed E, Offen D, Green P.

SourceLaboratory of Neurosciences, Felsenstein Medical Research Center, Beilinson Campus, Sackler School of Medicine, Tel Aviv University, Petah Tiqwa 49100, Israel.

Abstract

Cell replacement therapy is being investigated for the treatment of neurodegenerative disorders. Adult autologous bone marrow-derived mesenchymal stem cells (MSCs) have been induced to differentiate into neuron-like cells harboring a variety of neuronal markers and transcription factors. Neural tissue characteristically contains high proportions of docosahexaenoic acid (DHA) and arachidonic acid (AA). In this study, evaluation of the fatty acid profile of differentiated neuron-like cells revealed a very low level of DHA, similar to that in MSCs but different from typical neurons. Supplementation of the medium with DHA alone resulted in increased levels of DHA but concomitant low levels of AA. However, supplementation with both DHA and AA yielded a fatty acid profile resembling that of neural tissue. It also resulted in enhanced outgrowth of neurite-like processes, hallmarks of neuronal differentiation. These findings demonstrate the essentiality of DHA and AA supplementation in the process of induced neuronal differentiation and have important implications for the development of cell replacement strategies of neural repair.

PMID:17185746[PubMed - indexed for MEDLINE]

Some mothers feel their children's autism did not fully express itself until after they quit breast feeding

I wouldn't be here today, with these outlandish thoughts, but for a woman who is doing quite an interesting series on autism and evolutionary psychiatry in a Psychology Today blog. Her name is Dr. Emily Deans. This is her blog.

G.K. Chesterton on the Tyranny of Science

2011-04-21T08:36:00.001-04:00

G.K. Chesterton on the Tyranny of Science

Eugenics and Other Evils, by G.K. Chesterton (Cassell : 1922), p.76-77.
The thing that really is trying to tyrannise through government is Science. The thing that really does use the secular arm is Science. And the creed that really is levying tithes and capturing schools, the creed that really is enforced by fine and imprisonment, the creed that really is proclaimed not in sermons but in statutes, and spread not by pilgrims but by policemen — that creed is the great but disputed system of thought which began with Evolution and has ended in Eugenics. Materialism is really our established Church; for the Government will really help it to persecute its heretics. Vaccination, in its hundred years of experiment, has been disputed almost as much as baptism in its approximate two thousand. But it seems quite natural to our politicians to enforce vaccination; and it would seem to them madness to enforce baptism.

Who would guess the high priest of paradox had an opinion almost 100 years ago on vaccinations? Science believes it holds all that is pure and good and holy. It has made a religion of itself. Navel gazing has led to it's inability to see that it holds few answers, and receives fewer accolades among the common man. It can tell you what doesn't work, but not what does. It is like a brilliant child who cannot feed himself...his brilliance is for naught. It dies without being fed by the illusion of superiority. Like the shamans of old, it's power comes purely from perception. Like medicine before the discovery of germs...it will look back upon these days as days of ignorance, but in this day, "we are brilliant!"

It is a petulant child who refuses to say, "I don't know."

True Science--click to see cartoon.

When WON'T a nypical look you in the eye?

2011-04-19T10:55:00.000-04:00

Just got done reading Be Different by John Elder Robison. Interesting stuff. Although I needed to listen to Dr. Temple Grandin in the beginning, to have faith that just because you're different doesn't make you worthless...Robison's book tells me just because you're different doesn't mean you can't outsmart your detractors. He found a way to succeed because of his differences, not in spite of them.

Anyhow, I read the book, and I like the word "nypicals" because it is amusing. Kinda deragotory in a way...like "don't take yourselves so seriously", just because you can see the splinter in someone else eye, and not the log in your own. Nypicals tend to be hypocrites, but cannot see it. They are blind to their own disabilities.

Something about this book helped me see the hypocrisy in nypicals. I started observing them in the same way I used to feel observed by them. And you know what? They really are amusing. They take themselves SO SERIOUSLY, all the while attempting to be Aspergerian-lite. An Aspergerian-lite is anyone who sees themselves as an authority on anything. Then they go all Sheldon (ala Big Bang) on you, like YOU are the idiot. Good stuff.

So, when will a nypical not stare at your eyeballs?

When they are pissed. When they want you to disappear from their world. When you don't exist to them. The same reason our kids use. They find us odious manipulators. Nypicals find us odious people not able to be manipulated. Makes you want to make SURE you make eye contact with them, for once. Tit for tat.

Aint life grand?

A Picture Is Worth a Thousand Words.

2011-04-13T10:10:00.000-04:00

Last Saturday, Ben and his Daddy moved a steam engine off a truck and onto the rails. Ben's Daddy is taking the pictures, Ben is wearing the blue hard-hat.. I always kinda wondered, but in Ben's teen years, his father has become the greatest Dad in the world! He "gets" Ben. He didn' take Ben hunting, he wasn't a scout leader (for long), isn't rich enough to buy a railroad, but he knows what this young man needs. He needs someone to believe in him.

Love is a verb, not a feeling. Feelings are easy, love is hard. Kinda like moving a steam engine. But very rewarding...

A day with Ben

2011-04-04T11:49:00.000-04:00

A day with Ben:

My son is my friend. I don't have to go about changing him. He's, well, he's very funny in my eyes. I'm about half-blind, though.

We go out for pizza. The table has butcher paper and crayons. Ben draws out some emoticons he's become familiar with. I crack up. The bartender thinks I'm drunk. I'm not...yet...She makes a damn fine margarita, though, strait up on the rocks.

XD

--laughing

>8|

-- pissed

D8<

--G.D. It! (look from right to left)

D:<

--Angry nerd (R to L again)

D:>

---Oh dear God! (R to L)

We are easily amused. It's a gift, I guess.

Somebody you let down your guard enough to laugh with, becomes your friend forever. Why is that?

I'm tired

2011-04-04T08:08:00.000-04:00

I get tired of thinking all autism all the time. I'm weary of trying to wrap my mind around all things autistic and trying to understand. I've heard the "unexamined life is not worth living.", but all this belly-gazing is making me tired.

For some, it is just a different way of thinking. For others, it is a profound impairment. For my son, I think it is a learning disability. My teaching background bears witness to that. Man alive does that kid learn differently. It's fun to come up with something that works. He wasn't school material...as bright as he is. But a part of me doesn't want to think of him as autisitc. I want to think of him as Ben.

I gave it the good fight, did everything within my energy and means to help Ben.. Now, I'm just coasting. Like every parent, I hope for the best for my son. I worry he'll get into trouble and have to pay a cost, like jail. I worry he won't find friends to make life worth living. I worry he will find friends and be as wild as his mama. I worry he won't be able to make a living and have to spend the rest of his life living with his parents. I worry he WILL, and he'll move out, and I won't be able to protect him anymore.

He is very sweet overall, but he's a little hot-headed. I worry he's too sweet, I worry he's too hot headed.

When Ben first came home, I worried he would die...really...what's that thing...Sudden Infant Death Syndrome. I worried he would quit breathing and I wouldn't be there to shake him into conciousness. I had to give him to the angels so I could sleep.

I worry I'm too neurotic, and he'll suffer as an adult and live in the psychiatrists office. I worry I'm too lax, and didn't give him the right stuff and he'll grow up and be cruel and viscious. I worry I gave him too much of the catholic sense of guilt, and he'll not take chances, or allow others to walk all over him. I worry he'll be poor. I don't worry if he'll be rich...it's damn nice not to have to worry where you're next meal is going to come from.

Well, anyhow...I'm tired.

autisitic speaks: Paging Dr. codeman38

2011-04-03T11:43:00.000-04:00

Dr. codeman38, autism expert. Enuf said.

http://www.autism-society.org/news/in-the-news/autism-society-will-join.html

2011-04-02T10:17:00.000-04:00

http://www.autism-society.org/news/in-the-news/autism-society-will-join.html

Autism Understanding and AcceptanceOpen Letter to the World

2011-04-02T08:14:00.001-04:00

Autism Understanding and AcceptanceOpen Letter to the World

We (The Autism Community) need for you to know what Autism is.

We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.

This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me...

Autism was a horrible label that made me lose faith in my child. Now, autism is a group of wonderful, brilliant people whose hearts go out to those who are having a bit of a tough time in life, like they are. Autism is a right-brained way of looking at the world, where thoughts/perceptions preceed language, and where over-bearing sensory stimulation, lack of understanding, and emotional liability can make finding one's way a constant battle. Autism is also a way of being that sensitizes one to the world so profoundly that it can feel unbearable to live. Autism is a way of being very, very human, even if you feel like an anthropologist from Mars.

The greatest gift autism gives a person is empathy. Figure that one out! You will never believe it, unless you look at things differently!!!

A great write-up on Synthenesia on Daily Kos

2011-03-24T11:04:00.001-04:00

You know that autism speaks to creativity, as do many "brain diseases" such as schizphrenia, ADHD, Bipolar...one wonders if any "creative ones" appear in the neurotypical world.

I go to Daily Kos daily. It's a liberal blog here in America. More even than loving it for the news you don't always get on the boob-tube, I've come to love the writers there. I think it has a readership of a million people a day, but anyone can create a diary, once they sign up and go through the one week waiting period, which stops a lot of drive by trolls from taking shots at the "moran libs".

rhubarb created a diary there that some might find of interest. It is very well researched and there is lots of linky-goodness to other sites, for more info.

I was well into my thirties before I figured out that most people did not see a color associated with every letter and number, did not see shapes associated with sounds, and didn't view a year as a big hamster wheel with a rung for every day. Before you counsel me to take my meds, there's more to say about this phenomenon, known as "synethesia." As with left handers, you might think we synesthetes are a little mixed up, but we are in fine company! There is a long list of famous synesthetes, from Richard Feynman to Wassily Kandinsky.

The following is from the Library of Congress presentation by Doctors Richard E Cytoic.

I give credit to rhubarb for this link:

http://www.synesthete.org/index.php

There is a test there he wrote about that takes about 40 minutes, to figure out if you have one of the more common types of sensory pairings, although there are at least 150 documented.

Thanks for reading, Rose

A review of Savant Syndrome and its possible relationship to epilepsy.

2011-03-10T11:18:00.000-05:00

Hmm...the tyranny of the left hemisphere....

It starts young...

2011-03-06T20:04:00.000-05:00

The "least restrictive environment" was drummed into my head when I went to college for a degree in Special Education back in the late seventies. Schools had just begun to open up their doors to the handicapped who previously might have been institutionalized or been raised and taught at home. My mentor started a school long before P.L. 94-142 mandated teaching the handicapped in their own school districts and neighborhoods when possible, at the expense of public schools. Now days, there are still legal battles regarding what is meant by the "least restrictive environment", and many parents fight to have their children learn alongside their non-handicapped peers. Many--I'd venture to say MOST, just put up with what the schools give them, not having the time or funds or energy to do legal battle with a far more endowed and experienced opponent.

My son is mildly handicapped. He spent 95% of his time in the regular classroom, albeit with ritalin. Even at that I remember the early days. Ben wouldn't sit still or quiet to go to library activities or church. He went to a Northern Baptist preschool where the teacher just "got him", or didn't get easily upset. Developmental Preschool at ages 3 and 4, and a great kindergarten teacher who identified with wiggly kids. But he could not communicate, other than echolalia, until about 3rd grade. I reiterate: he was mildly handicapped, but that didn't make it easy.

I went to church today (please tell my sweet mama!). Something led me to pick up the brochure from St. James's preschool. Lookie heah...

All children in the 3 & 4 year old classes must be completely toilet trained and comfortable with bathroom habits...Four year old children must be able to communicate their needs in an understandable manner and must be able to work cooperatively in small group and large group activities...

What it said to me was...

Keep your disabled kids at home. We can't handle them. Jesus may love them but we find them a giant pain in the ass...

Maybe Ben's being refused admittance to a catholic grade school 9 years ago sensitized me. I really thought that those who hoped to be "Christ to others" would have the heart. They didn't. And when I left the church in 2006, I never really looked back. There was a whole lotta non Jesus like shit going on all the time, and not a second of guilt shadowed this parochially trained mind. To go back after years; mama asked me to and if she asked me to climb Mount Everest, I would; to go back and find it exactly the same while I had grown so much upset me.

Thank God for Kevin. Just as beautiful as he could be and dressed to the nines, in a big black wheel chair with Daddy pushing him, "Hi, little guy, how are you today?"

"He doesn't always answer...Kevin, ..."

"Nah, just leave him alone, he's fine!" I said, and he did allow me to rub his back.

"I'm sorry..." said his Dad.

"No, don't be sorry! He's like a sign to me today!" (Yeah, I know it was a goofy-ass thing to say. It's the only language I speak.)

"I've got a mildly handicapped son, with autism, and I find the church is real bad about handicapped outreach. Do they have anything here?"

"No, not really..."

Sometimes we gotta be the change we want to see. If they hurt me again, so help me God....

"I'm Stupid"

2011-02-23T11:36:00.000-05:00

It broke my heart. Ben never talked about school until about grade 5, but once in the first grade he just couldn't hold it in. He came home from school, flipped himself on the couch, and just started crying uncontrollably as I held him.

"I'm stupid", he sobbed.

It had something to do with Math, I know that much.

It's hard for me to remember now, just how different Ben was when he started off.

I WOULD say he was handicapped when he was 3 years old. He obtained special services starting at age 3 for speech, OT, and developmental preschool services. MRI's snd EEG's were run, and I remember seeing x-rays of his brain in there somewhere. Those were scary times. He continued to receive Speech and OT for 6 more years. At about grade 4, his speech was more fluent and no longer echolalic. Before that time, he always conversed in echolalia, or "tv-talk", as we called it. He had his own laugh, but he was just as likely to use the laugh of a friend, or someone he heard on t.v. I lived to make him laugh HIS laugh. It wa so infectious to me, that I must confess I would do anything to hear it! I told myself it was shared communication, the opposite of autistic communication. It connected us in a way no other talk could. To this day, we speak in a special language to each other, not always in words, the primary emphasis being not communication of ideas/facts, but absurdity. I digress...

Chaoticidealism's post about Autism and Disability made me think of the old days. Frankly, I had forgotten how Ben had started off, so different from his peers. He qualified for special schooling and therapy as a preschooler,and all 9 years in public school. It seems now we are homeschooling, I"m not always reminded of his "differences". Surely his disability didn't disappear when he left public school, did it? It always seemed to disappear in the summertime, too...Now, it's like summertime all the time. Maybe it's wrong to cut him so much slack, but it felt so much like child abuse when he was in grade school, and even at that, it was never good enough. He might work 4 or 5 hours on homework a night, but up until 5th grade, he never missed an assignment, even though he was unmedicated at night, as he was to stay out of a full time special ed program during the day. That'd been even further abuse in my mind...to give ritalin to a kid for homework when he didn't sleep at night the way it was. And then, of course, he'd have needed a sleeping pill.

WHAT THE HELL ARE WE DOING TO OUR KIDS??

WHY DO WE PUT SO MUCH ON LITTLE PEOPLE'S SHOULDERS???

It's a sin.

Everything that was done, therapy/drugs/homework help...was done to make Ben fit a mold he had never fit from the day he was born. Why did I try so hard to make him 'normal' when he is SO much better at being Ben? I mean, we were punishing ourselves as well as him, as he is so damn good at being who he is, that, somehow, I do believe he's going to make it in this world! But only by being who he is. 'Cause it's too damn much work to be somebody you're not...not.worth.the.trouble.

I've been thinking lately I"ve been being too easy on Ben. Mavbe I should be insisting on super high standards like the public school wants but can't seem to get out of our kids, mostly boys. I WANNA be a TIGER MOM!

"You could never be a Tiger Mom, mom. You're too nice!"

And I think of my own mother, who gave me unconditional love, and never asked more than she thought I was able to give.

"You know, I always thought it was a sign of weakness for mom to be so kind. But I think it takes much more strength to be kind." And only love is patient and kind.

We as mother's don't need to be mean. The school will do that for us, and not even on purpose. It's just what happens when you try to make people something they aren't.

For being visionary, we're awfully verbose

2011-02-12T20:35:00.000-05:00

There is a discussion going on over at a blog by a neurologist at Cracking the Enigma I don't really belong there, I'm just a nerdy housewife. So I'm a just gonna let my opines out here:

What is it about the DSM that pisses me off? Everything is seen as a defect instead of a difference. Oh, days of tying up left hands, BEGONE!!

So auties line up cars as children. Visualize cars in the real world. How do you "see" them?

How about lining up cans in the grocery store? If you think visually, you also represent your reality visually.

There is a bias via the auditory thinkers who need social interaction--they learn by hearing-- versus the visual thinker who does not. In the dictionary you come up with: impractical, impracticable, fancied, illusory, chimerical, unrealistic for synonyms of visionary, which I always thought of as a high complement. The antonym is practical ( from earlier practic, from French pratique, via Late Latin from Greek praktikos, from prassein to experience, negotiate, perform) People who think in words do have a bias. Negotiation is key, If one doesn't think within the framework of words and with others, they are defective.

In my estimation, these same defective people also tend to be inventors, progressives, activists, artists, writers: people who live outside themselves in order to help or change humanity. The thought, rather than the interaction, is imperative. No wonder this world is overwhelming to autists. They, in reality, live in a different world. In the autist world, words are a tool, not a necessity. Feelings and perceptions, the engines of sentient responsiveness to the world, do not need words. In order to interact with those feelings, perceptions...in order to find a place in the world, those thoughts must be given the structure of language. If you can't develop language to a degree to be able to interact with those who prefer language...you are seen as difficult, strange, cold, needing "fixed" when in essence you are only being true to yourself.

@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@

In another vein, I had become interested in alternative ways to teach my son how to write an essay. I can remember 30 years ago, mind-maps were beginning to be the rage in special ed classroom. I could never quite understand what they were. We used Roman numerals and the alphabet to give structure to our notes, our papers--making an "outline" was key. The mind map is a very different, and very visual way to structure a paper. (You do know most bright kids in special ed are there because they don't learn the way schools teach.)

Here is an excellent, excellent example of a very visual mindmap. It is about the life and times of William Shakespeare. PLEASE, do go look at it. You will love it, and you will gain a good understanding of a visual representation of an outline. It is fantastic, but I couldn't copy it here. It reminds me so much of the great comics Ben used to draw.

http://www.mind-mapping.co.uk/_images/_Pdf/EXAMPLES/EDUCATION/Language/English-Literature/William-Shakespeare-Life-handdrawn-unknown.pdf

Lord help those who think kinesthetically, probably the least studied way of teaching.

Ben's essay about essays

2011-02-10T19:26:00.000-05:00

When I write an essay, I want to be clear on the topic that the essay is about. In the case of a political essay, I would want to make sure that each side of the issue being discussed is represented as equally as possible. My essay would try to be serious. But if it ever got too serious unnecessarily, then a completely absurd yet related to the topic joke would be written in. If an essay were to get too silly however, I would scrap it and start over. unless it were an essay about Monty Python’s Flying Circus, in which case it would need to be very silly. However, if I am to be writing a technical essay, I am to be very serious about the whole thing, because any silliness on the part of the essay writer could result in a catastrophic mechanical failure for the reader. When writing an essay, I believe that one should do the research beforehand in order for said essay to be accurate. I also think that one should not try to put their opinions into an essay, so as not to give the reader any unnecessary influence. Unless you are writing a persuasive essay, in which case you would still need to provide a reason for your opinion. Also, I always try to provide information that is new so as not to sound as if I am regurgitating what has already been said. I know that I have just contradicted myself when I said that I try not to Regurgitate old information. This brings me to my next point, never unnecessarily provide contradicting information. Contradicting information only makes your essay confusing and harder to understand. Well, that is my philosophy on essay writing. I hope you managed to gain something useful from it. Adieu.

I liked it. It made me laugh, and it is just like Ben.

("Everything always has to be a game with you, doesn't it!" I say.

"Pretty much...")

I don't know what to do. I'm a damn poor English teacher, and if you think I can make him plug into the standard formula; well, it just doesn't seem to work. I do have a plan, though. For a while I'm going to see how many writers I enjoy follow the

Main Idea
Topic sentence
supporting points
conclusion.

I just don't know.

Where does the "voice"begin and the structure end?

It started with a Brio train

2011-02-06T21:48:00.000-05:00

Some kids with Autism never lose interest in their first loves. Ben's happened to be trains. He got so excited his third Christmas when Daddy spent money we didn't have on a train set. He loved Thomas the tank engine, cars, legos, anything mechanical in the coming years. Then, it was radios, cameras, turntables, the Beatles...but his interest in trains never waivered.

Since first grade, Ben has wanted to be an inventor. Since the fourth grade, he knew it would have something to do with redesigned steam-engines and high speed rail. Specifically, somehow hydrogen power is involved. I don't quite understand, and even though we were encouraged in pre-school to not feed Ben's narrow interests, we kind of ignored that advice.

When this all began, when Ben was labelled PDD-NOS at age 3, he was not considered "high functioning", but some other kids in his developmental preschool were. One's daddy was a fireman, another's uncle was a rocket scientist. (Temple Grandin refers to the rocket science division at NASA as a "sheltered workshop for the socially inept" or something on that order.)

I don't know what the future holds for Ben. I know that he contacted the museum where he has been volunteering and put in hundreds of hours working with trains, the big boys, the real things. They rented some cranes in order to move a couple of engines off flatcars onto track. Maybe it'd just me, but I think it's kinda cool!

I really, really love this guy

2011-02-01T10:48:00.001-05:00

and I really, really, really love this picture

Although I gotta say, that boy looks like somebody ought to feed him some 'taters.

I love this guy

2011-01-29T15:14:00.003-05:00

Ben's grammar teacher: Agatha Christy...ps. she's not the guy I love...

I homeschool. Yeah, what of it? It's something I never thought I'd do. Only zealots and goofy people homeschool. Okay, so that doesn't exclude me in either case, especially the later, but still...

Ben came .5 of a percentage point from failing Algebra in 8th grade. This story shows we may have been on to something when we worried we were going to lose him regarding education. The difference between the way he learns, and the way they taught, those chasms were too big for a 14 year old to cross. Besides...he was in a BD classroom (Behaviorally Disordered) for his English mod, so who cares? There's no way he was gonna get English and Math, his greatest strengths/weaknesses, the two subjects one uses most in day to day living, so...WTF? ("With the future" in mind.)

Plus that, he didn't need meds at home. Did I say NO RITALIN? No ritalin to keep him out of a full time special ed classroom, this here kid with his high IQ.

In my homeschooling Ben, I've learned a few things.

First of all, the College Degree in Special Education meant nothing. Ben was easy to teach in most subjects, and easily absorbed lessons in History and Science. Testing in his 9th grade year showed he was past the high school level in understanding those two. But Algebra? I beat my head against the wall for 2 years before I found ALEKS, where he learned at his own pace, and learned by comparing his answers to the correct ones, so he could literally "see" where he was going wrong. On the third year of trying to teach Algebra, with ALEKS, he got an 85% for the year. If he had stayed in school, I've no doubt they'd have never figured out how to teach him. I just got lucky because I frequented the LDonline site and happened to happen in on a conversation. And he did it all himself. Ninety-nine and 44/100 % independently. In fact, ALEKS discouraged parents from helping because there was no way to know what the student knew and what he needed to learn if parent's helped "correct" their answers. Can you say Godsend?

Now, ALEKS taught me that Ben could be much more responsible for his own learning. So we are taking Geometry and Chemistry from the same site . He's a natural in Geometry, but if he quit today, he'd have a 26% for the year in Chemistry. But he's still plugging away because his dream is to work with steam engines (and thus boilers) and he needs the chemistry, so he doesn't give up. It's presented in the same format, and he learns it slowly yet completely. I don't spend any time helping. By the grace of God and hard work he'll pass Chemistry if he bites the bullet. He just needs to come up with 44% more points to pass...and, it fulfills Georgia's damn standards!

By this year, I am starting to see a pattern. In those subjects Ben does poorly in, he has to be taught visually. He has to "see" the answer to learn to correct his mistakes. Telling him only frustrates him, because he has no clue what you are trying to say. If he "sees" the pattern, he gets it. So, yesterday, after being so frustrated at Ben's refusal to do anything but listen to the tapes that Dr. Lybrand created for teaching writing, I decided to try one of Dr. Lybrands ideas. He said, to teach grammar to a child, one can have them copy out of their favorite books. Our authors are among the best at grammar, it's their livelihood! To learn by example, if a child seems too insecure to write, have him copy stories from, in Ben's case, Agatha Christie!!! Now, I know you are saying, "so what", but you'll never know the hell we been through to try to teach grammar! Those books, especially if they are "remedial", are so effing boring...pages and pages and pages of the same crap. And Ben would STILL not get it. See, the thing is, most people hate grammar, probably even more than hate math, I'd venture. They hate it so much they don't really test for grammar in the ACT and SAT so much as they test for clarity, and ability to get your point across. And the thing about this is, his grammar teacher is Agatha Christie!!! How cool is that??

Hot damn....I just looked up Agatha Christie in order to see if it was her real name or a pen name, and Atlanta has an AGATHA CHRISTIE DINNER THEATRE AND COMEDY CLUB!!

I love homeschool...

Who is this?

2010-09-25T10:15:00.001-04:00

Friend or foe?

Not that it matters much to me, but why are so many ex-hubbers on this list? Curiosity killed the cat, but...

ABA-FREE World

2010-09-18T10:39:00.000-04:00

Dear Ben:

I don't know about your teachers, what they did or didn't do to obtain your cooperation. All I know is Mr. Butler could get you to do anything...and I don't think he ever said a word to you...just treated you as you wanted to be treated, I guess.

You wrote once on autism punk, and a teacher asked you, "How do I treat my students?" and you said "Just let them come to you..."

That's like ABA on opposite day...Normally, it's always in your face, telling you what to do, taking notes of non-compliance. Just as life must seem to you at times. I know I often make you feel "less than", and I'm sorry. I'm still learning.

Because of the Hub, I felt like the sole parent who wasn't interested in politically demanding ABA treatment for Autism at the Family Connections meetings in South Carolina. I just sensed it was wrong, that it was filling the pockets of idiots, you know?

"Just let them come to you."

Why are we afraid of that?

The Trial by Existence.

2010-09-16T09:52:00.000-04:00

Ben:

Your dad bought me a book of poems by Robert Frost one of our first Christmases together. I'd never come cross this one in my education, but it knocked me out, and it's the only poem I've ever tried (and failed) to memorize. I know you love Farenheit 451...if I could, I would "become" this poem.

*************************************************************************

Robert Frost (1874–1963). A Boy’s Will. 1915.

22. The Trial by Existence

EVEN the bravest that are slain

Shall not dissemble their surprise

On waking to find valor reign,

Even as on earth, in paradise;

And where they sought without the sword 5

Wide fields of asphodel fore’er,

To find that the utmost reward

Of daring should be still to dare.

The light of heaven falls whole and white

And is not shattered into dyes, 10

The light for ever is morning light;

The hills are verdured pasture-wise;

The angel hosts with freshness go,

And seek with laughter what to brave;—

And binding all is the hushed snow 15

Of the far-distant breaking wave.

And from a cliff-top is proclaimed

The gathering of the souls for birth,

The trial by existence named,

The obscuration upon earth. 20

And the slant spirits trooping by

In streams and cross- and counter-streams

Can but give ear to that sweet cry

For its suggestion of what dreams!

And the more loitering are turned 25

To view once more the sacrifice

Of those who for some good discerned

Will gladly give up paradise.

And a white shimmering concourse rolls

Toward the throne to witness there 30

The speeding of devoted souls

Which God makes his especial care.

And none are taken but who will,

Having first heard the life read out

That opens earthward, good and ill, 35

Beyond the shadow of a doubt;

And very beautifully God limns,

And tenderly, life’s little dream,

But naught extenuates or dims,

Setting the thing that is supreme. 40

Nor is there wanting in the press

Some spirit to stand simply forth,

Heroic in its nakedness,

Against the uttermost of earth.

The tale of earth’s unhonored things 45

Sounds nobler there than ’neath the sun;

And the mind whirls and the heart sings,

And a shout greets the daring one.

But always God speaks at the end:

’One thought in agony of strife 50

The bravest would have by for friend,

The memory that he chose the life;

But the pure fate to which you go

Admits no memory of choice,

Or the woe were not earthly woe 55

To which you give the assenting voice.’

And so the choice must be again,

But the last choice is still the same;

And the awe passes wonder then,

And a hush falls for all acclaim. 60

And God has taken a flower of gold

And broken it, and used therefrom

The mystic link to bind and hold

Spirit to matter till death come.

‘Tis of the essence of life here, 65

Though we choose greatly, still to lack

The lasting memory at all clear,

That life has for us on the wrack

Nothing but what we somehow chose;

Thus are we wholly stripped of pride 70

In the pain that has but one close,

Bearing it crushed and mystified.

************************************************************************************

Every line has a special meaning to me, but I am often reminded of:

The tale of earth’s unhonored things 45

Sounds nobler there than ’neath the sun;

I see so many people who don't see what heroes they are...they commit astounding acts of kindness...that go totally unnoticed by their peers, but are deeply appreciated, life-changing,
in ways that no-one but the objects of their Loving-kindness will ever know.

I'm thinking of people who give up their lives in order to take care of aging parents, who don't deserve to die alone in enormously expensive warehouses for the elderly or infirmed. "Important" people have the luxury to forget their parents...and give them the "best institutions" money can buy!

I don't know if you can appreciate this now, Ben, but you probably can. You tend to "see through the clutter" and call bullshit pretty easily. But there are still negative stereotypes and prejudices that cause people to dismiss those who are powerless or poor. Yet, I think they hold the "heart of God" and keep it alive and beating in this cold world. Were it not for them...

Do you rememver Chandra, who works in maintainence at Daddy's job? She's the gal who was born deaf, but it was never discovered for years. She was always treated as mentally retarded before then. She had something she wanted to tell me yesterday, that she had become a grandmother!

Usually, I can't understand her, but yesterday every word came out clear as a bell...I was watching her lips (yeah, I know, go figure...) She was talking about you and her 17 year old daughter who I found out was her baby, and she went on to tell me she had 3 more children, and their ages.

Then she mumbled something about they just came along, but then she said, "I just couldn't kill them. They did't ask to be born in this world."

I doubt that she was ever married. She had to have been poor as hell all her life. She is black, deaf, and poor, as archetypal a background for a woman seeking an abortion as any I've ever heard. All her children still live with her.

"How disgusting!" the worldly say. You know they do...they invented the words that cut to the bone.

"My grandbaby's four months old...I'll have to bring the pictures so you can see her!"

"Yeah, I'll see 'em next month when we come to class." I tell her

"I'll give you one then!" she says, and I can see the pride in her face as we say goodbye.

"Yes, you do that. And every time I see it, I'll pray for her.." I say, even though I'm kinda agnostic. People who are this strong, this kind, just kinda bring out my fledgling faith. They NEED God, not the other way around.

We can think we own the world, that we are above others, and be "thank GOD I am not like that man!" Pharisees. But me and Robert Frost know better.

No, wait: That's God, me, and Robert Frost.

The Greatest Gift

2010-09-09T10:29:00.000-04:00

The greatest gift you can give to your child is a happy childhood.

(Overheard on Today show interview a few moments ago...)

There's nothing wrong with Ben.

2010-09-08T09:21:00.000-04:00

WHAT??WHAT???ARE YOU CRAZY???

This drama mama nearly destroyed herself trying to smack reality in her family when they insisted on this mantra.

I didn't understand the wisdom of that mantra.

A child needs an advocate, not a critic.

(Picture is "World's most complicated signature", by Ben Walker)

Just comes a time when you think..."He is perfect!"

What an ease it must be to your child's heart when this is how you approach him.

There is this thing, called "self-esteem". I can't imagine you get it from behavioral exercises, drugs, institutions...if no one believes in us, can we believe in ourselves? If no one loves us, without us following a certain prescribed notion of "human" or "capable" that has little in common with who we are, can we be truly human? Who decides???

One thing I have learned is that there are two worlds. One is of illusion...it's found in books(Diaganostic and Statistical Manual????) and "experts" and "goals" and what "should" be and money and sacrifice and heroes and villians ...and then, there is the messy, complicated, wondrous world full of love and caring and acceptance and joy, and it's in the heart, not the head.

My head told me all the things that were wrong. My heart tells me all the things that are right.

What is essential is invisible to the eye...

2010-08-29T12:18:00.000-04:00

Link to Morton Ann Gernsbacher's short article by clicking on the above link. She is on page 10-11, I believe, and this was written 6 years ago.

We are "like babies" when it comes to autism, as Neytiri would say of Jake Sully in AVATAR, Ben's favorite film. We are punitive, rather than doing the hard work of grown-ups. Rather than see in whole what is before us in the autistic child, we punish the parts we don't like.

I've seen the magic of seeing what is inside a person who is unable to communicate the richness within, probably because of the Hub and especially Amanda Baggs. Paige, who is severely compromised by Cerebral Palsy, allowed me into her world when I taught a PMD (Profoundly Mentally Disabled) classroom. Turns out she is "profoundly physically disabled" to the point of having NO reliable form of communication.

It is magic, like "shock and awe" to the psyche. You are forever changed...

For my son Benjamin, it wasn't quite as apparent, as there was so much fear and denial and just goofy stuff mixed in. But the "universe" or God or even just my heart spoke to me: "The really smart ones start off different". They have less in common with "normal" or average than they do with those deteremined to be at the lower end of the the bell curve. Probably because few ever come back from visiting that country without pre-determined ideas left untouched.

I hope this isn't too confusing. I feel as though I'm babbling.

Clever google

2010-04-01T12:43:00.000-04:00

Topeka:

I often say if Ben was drugged or cured, I would miss his cleverness. He can make me laugh easily, For him, it is a survival mechanism, as he told our doctor: "Mom says if she wasn't laughing she'd kill me!"

Duh...ya got that right, ya little sh%! I love the word clever, I really do. It's a slight step above just plain old funny. Funny with brains.Funny, with a twist. Funny straight up on the rocks with an olive garnish.
So anyhow, this morning I am getting online and I see "Topeka" instead of "Google"...WTH??? The mayor of Topeka, tongue-in-cheek, changed it to "Google", Kansas. So google changes their name to Topeka. Good PR move for both of them.

We've lived in Topeka... Yeah, we saw the wrong Reverend Phelps and his family and their "God hates fags" signs all the time. They lived in their compound just down the street from us. Why is it that so many cults use religion? So, I figure, beings as I just came across a speech written by the wrong Reverend Phelps's son, I'd link to it for those who might be interested in the bastard's self-righteousness. Kinda puts it all into perspective. The guy's just a plain old egotistical mean bastard who likes the spotlight. This is Nate Phelps memories, and the reason why he is now an atheist.

The bible says that whats done in the dark will be shone in the light. Sunshine is a great disinfectant. It also says that those who harm or mislead the little ones, might be better off to have a stone wrapped around their neck and be throne into a lake of fire, than be judged for their deeds by God.

So anyhow, don't let anyone tell you that nothing good comes from Kansas. There's us Walkers, especially Ben, and the mayor. At least.

I Think in Pictures, You Teach in Words:

2010-03-20T14:25:00.000-04:00

I Think in Pictures, You Teach in Words:

The Gifted Visual Spatial Learner (Note: all quoted from this link)

     Every few years, this post finds it's way into my psyche...I really should study the whole thing, just to see what's up. For the first time, I noticed this morning that they are speaking of talent development. I'm homeschooling, but I'm at a loss as to where to go with Ben. It's like a dead end street, teaching as a public school teacher would, because, well, in truth...if you take a look at the article...it's NOT the way he learns. It would be an exercise in frustration, the same as school was. I'm thinking....THIS is why our kids are singled out, whereas in the past, they weren't recognized, just thought to be "slow" maybe. Schools can't take much more. They are, by design, only meant to teach a certain type of child. They can't take responsibility for not being able to teach certain children. It has to be the kids fault. Luckily, for them, most children can obtain an education from them so it confirms their viability. Unlucky for the kids who don't fit their mold.
     This article describes Benny to a "t", his gifts, which are creativity, humor, sense of space, wholistic thinking, associative thinking....everything a school tends to squash. His "deficits", basically, pen and paper drills, which make up 90% of school. Makes me think maybe his biggest deficit IS the public education system. I will not lie: when I recieved my degree in Special Ed, I couldn't wrap my little mind around visual thinkers. I was hoping I wouldn't have any in my class. I would bet my bottom dollar that a good share of kids without mental retardation in special ed classes are visual thinkers. Too bad for them.

     I'm thinking now, that I can be quite a hypocrite. I'm singing the praises of my child's unique learning style...while a part of me would be relieved if he could be "healed" of it's difference. Why???? Because it hard, and a lot of people with autism can't survive alone, as a person of a more typical nature does without trouble. Maybe it's shame that he'll be "on the county dole". Or blue collar. He has always voiced a fear of being homeless if he can't produce. I've been raised classist, as well as racist, the child of a wealthy (eventually) business owner educated in private schooling. I remember the day I let go of my racism...It was literally "washed away". I need to "wash away" my doubts in my son. He's going to take the road less travelled, not by choice but by nature.

     Well, anyhow, I have quoted parts of the article, just to give you a sense. See if you recognize your child as I did mine.

The following characteristics will help in the identification of gifted visual spatial learners. However it should be noted that not all gifted visual spatial learners will match all these characteristics:

Likes complex ideas and tasks and does well on them, yet often fails at simple things

Is physically sensitive, often has acute hearing and intense reactions to loud noises.

Poor listening skills, often seems not to be listening

Has difficulty finishing tasks/school work

Has poor handwriting or difficulty keeping in the lines or grips the pen very hard and presses on the paper when writing

Loves Lego, puzzles, jigsaws, computer games, television, making things

Likes art and/or music

Has a poor sense of time

Is extremely sensitive to criticism

Is emotionally very sensitive

Has difficulty with spelling/times tables

Can remember the way somewhere after going there only once

Has a vivid imagination and/or disturbing dreams

Is distractible

Is very disorganised.

Here is a comparison of Left-brain versus Right-brain thinking. While trying to be an artist, I read the book above, and learned that us artist "wanna be's" can develop right brain thinking in order to see as an artist sees by performing special exercises. I wonder...do any of you know, are there "left brain exercises" one could do? Of course, it could make one more "whole -brained", which I haven't found to be to my advantage. Anyhow, I never could live in my right-mind, only visit, so I never became an artist.

Left Brain Mode

Verbal: Using words to name, describe, define

Analytic: Figuring things out step-by-step and part-by-part

Symbolic: Using a symbol to stand for something e.g. the sign + stands for the process of addition

Temporal: Keeping track of time, sequencing one thing after another

Rational: Drawing conclusions based on reason and facts

Logical: Drawing conclusions based on logic: one thing following another in logical order

Digital: Using numbers as in counting

Linear: Thinking in terms of linked ideas, one thought directly following another, often leading to a convergent conclusion

Right Brain Mode

Nonverbal: Awareness of things but minimal connection with words

Synthetic: Putting things together to form wholes

Concrete: Relating to things as they are at the present moment

Nontemporal: Without a sense of time

Nonrational: Not requiring a basis of reason

Intuitive: Making leaps of insight, often based on incomplete patterns, hunches, feelings or visual images

Spatial: Seeing where things are in relation to other things and how parts go together to form a whole

Holistic: Seeing whole things all at once; perceiving the overall patterns and structures, often leading to divergent conclusions

(Springer & Deutsch, 1989)

************

Whereas left brain thinking is step by step linear thinking over time, right brain thinking is an holistic system where all knowledge is interconnected in space. When left brain thinkers are asked the answer to a question, they will look for the right answer based on the facts at their disposal.

When right brain thinkers are asked a question, they usually respond with some form of “Tell me more/it depends”. As all their knowledge is connected, they can see many paths to differing answers and they want more information to help them decide which path to take to the required answer.

This divergent thinking is the hallmark of creativity but may not be understood in school where achievement is often seen as having the right answer. As Jeffery Freed says “Because one of the attributes of right brained thinking is a non-sequential divergent form of thinking, their minds often veer into unusual and different territory.

This can result in illogical or often unsubstantiated conclusions. On the other hand, they may view a problem from an entirely different angle, leading to new breakthroughs and discoveries” (Freed, 1996, p16).

************

The last quoted bit from the article follows. I will try to correct the html, but may just make a mess, which would make me sad, because THIS is where I recognize Ben's way the MOST. It's right there in black and white.

The following table lists the strengths and weaknesses of the visual spatial learning style.

Strengths                                               Weaknesses

• thrives on complexity                         • poor auditory memory, does not

                                                             remember three step instructions

• systems thinker                                   • difficulty memorising facts; poor at

                                                               subject areas that

                                                               equire  rote memorisation

                                                               e.g. biology, foreign languages

• high abstract reasoning                         • struggles with easy material

• loves difficult puzzles                            • poor at calculation

• keen visual memory                             • difficulty learning phonics

• creative, imaginative                             • difficulty with spelling

• good sense of humour                          • low word recognition

• better at mathematical                          • performs poorly or not at all on timed tests

analysis than computation

• better at reading comprehension           • difficulty learning mathematical facts

than decoding

• better at geometry than algebra            • inattentive in class, easily distracted

• better at physics than chemistry             • disorganised, forgets details

• fascinated by computers,                      • hates drill and repetition

especially computer graphics

• avid television watcher                         • "forgets" written homework assignments

• loves music                                           * submits short, sloppy work of poor quality

• day dreamer - rich fantasy life                • handwriting laboured and difficult to read

• elaborate doodler                                  • impulsive, tends to act first and think later

Source: Linda Silverman (1997)

Now, I could say, "How did they know my son?????", except I had a student in special ed 20 years ago who had almost exactly the same thinking style. Same weaknesses, same strengths.

This stuff fascinates me...hope I can learn from it.

Fragile X study

2010-03-01T10:49:00.000-05:00

Click on the title link to be directed to an article regarding the research going on at Emory University. Dr. Jeannie Visootsak, who is running the clinical trial at Emory’s Fragile X Center, remarks “This is the first time we are looking at treatment. I never thought we’d be here today. It’s amazing.”

Fragile X Syndrome is not autism, but 5% of autism is caused by FXS. The numbers for autism among people with FXS range from 10-15%. according to the NIMH
.
The story in the AJC article was kind of sad, remniscent of a book that I read years ago. The young man who is receiving treatment (possibly, it's a double blind study) is of the hope that the pill will "make him smarter". Flowers for Algernon , a novel, was written in 1958 and tells the story of a man undergoing a transformation because of medical treatment... will science fiction come to life in this case? We won't know for years. Yet, there are many cases in the present where medical science has changed the lives of those predisposed to neurological conditions by replacing missing chemicals or by changing the environment to avoid condition specific teratogens.(Epileptic seizures due to pyridoxine deficiency, although rare, are known to occur. They are characterized by untreatable convulsions during childhood. Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.Wilson's disease is an inherited disorder in which there is too much copper in the body's tissues. The excess copper damages the liver and nervous system. ) To say that we must accept all cases of autism as being a "way of being" and "untreatable" doesn't take into account these conditions. It does, however, set up parents to open themselves up to shamans who disregard medicine in favor of "woo".

Ben was tested for Fragile X. In fact, it was the only genetic testing we could afford. It was negative, when we received the results at age 8. We couldn't afford the testing for Tuberous Sclerosis with an out of pocket expense of $3000, although I considered it a possibility. The geneticists felt it wasn't necessary, that if Ben had TS, signs would eventually show up in his teens. Many parents only become aware of their own TS when their children manifest the signs earlier, or to a greater degree.

We were not searching for needles in a haystack. Our psychiatrist suggested that we send Ben through the USC School of Medicine Center for Disability Resources at the Midland Campus, a center which he was instrumental in founding. (Dr. "Luke" is extraordinary.) They specialized in Developmental Disabilities, and it was there that Ben was given the label of PDD_NOS. It also was noted that his skin contained birth-marks, both strawberry and cafe au lait, vascular malformations that can be indicative of medical problems, such as Tuberous Sclerosis and Neurofibromatosis. (TS and NF are two conditions that can cause autism in some individuals.)

I don't want to encourage people to think there may be a cure for "autism", there are probably hundreds of factors involved, and as many reasons for the autistic mind. In reality, I love Ben the way he is, and wouldn't want to change those things I love best about him, and it would make me very sad to see his quirky sense of humor leave him. If he was cured of that..if it was my choice, I'd say "no thank you". But, he can communicate with me. He, for the most part, is able to avoid overstimulation so it doesn't paralyse him or cause him to act out without the ability to reel himself in. I don't have to consider institutionalization. I don't have to consider an early death because of the medications he takes or doesn't take.

I'm not about to judge any parent or child who sees hope in this study.

Musings of a lonely mama...See if you can follow this train to the last station...

2010-02-27T14:10:00.001-05:00

I don't know what it is about this place. I find the most interesting people here. Maybe it's like church...you go out of habit and people expect to see you there. Anyhow, that's how it used to be, when I was a good little catholic girl!

We also have a creed of sorts. It's kinda like this, " Autism does not diminish the humanity of anyone", although I'm paraphrasing somewhat out of ignorance.. It's also kinda sad that it has to be expressed...you would think the idea would be apparent. Apparently, it's not. What with train wrecks, worse than cancer, worst welfare disaster in history, monsters and all. And death by autism a viable excuse for murderers. (If she had only been normal...) I guess you could say we have our martyrs.

We also have our teachers (rabbis?) who guide the flock, who are autistic themselves, which may not make the hub unique, but certainly make it real. They keep it real so mothers and fathers need not suffer the delusions of the masses. Sometimes our teachers are our children, who give us new eyes to see the world through and a distinct sense of purpose. Hopefully we have those "unsaved" scragglers who see our example, and turn away from promises of "cure" and towards acceptance, yeah, even verily towards celebration! Together we learn about science, education, psychology,medicine, and especially, advocacy.

I know y'all think I'm going on...being the drama-mama. But just today, I am thinking...where would I be without the hub? Would I still be constantly searching for cures, for adaptions, for doctors and ideas to help? I was getting a little disgusted at the time and money involved, as well as the delusions I was encouraged to take as gospel, without question... Somebody has determined that the typical desperate parent will spend at least "x" amount of money on shamanism, surely. For me, it was about $30 a month, not $50,000-$100,000 a year, like some. (Oh, look, mama...here comes the gravy train!!!!!!)

In 1999, I began searching the internet for answers and found the mercury militia, milk/wheat free diets, ABA, AIT, Pubmed, and Thinking in Pictures. Dr. Temple Grandin is the only one who has stayed, because: She could be my child, all grown up, as children tend to do. She WAS diagnosed autistic. She IS an adult. She DOES speak and work and care about kids with autism, hopefully more than in a monetary/fame sense. Alas, she only wrote 2 books at the time, and Thinking in Pictures literally became my bible. Later, Donna Williams Exposure Anxiety led me into new pastures.

And then that fatefull day of searching: I had read The Gift of Dyslexia, by Ron Davis. and Thom Hartmann's ADD board lead me to believe that there were people out there who knew, who I could interact with, who had survived and thrived regardless of their labels.

So I googled " the gift of autism"....nothing. (Things have changed...)
Being a child of the seventies, familiar with titles claiming "The Joy of...", I came up with Sister Estee and her blog, Joy of Autism . What the....the JOY of AUTISM??? How about that? Sister Bonnie of Aspergian Pride led me to Brother Kev and the Autism Hub. How in the hell I ever came to be in that place at that time was a fluke of timing and dumb luck. To be thrown into a maelstrom in the midst of Autism Advocacy when it was only 2 days old to me is beyond my reasoning. I'm trying to catch up. I learn something new every day...but the main thing I have learned is that there are labels, and expectations, and people (and me) pointing out my child's sliver in his eye and not seeing the logs in our own. This is heady stuff , in an intoxicating sense. There is no end to it. It continues to grow even as old churches and pastors attempt to join an ecumenical community of faith in reason and understanding, dreaming dreams that have yet to receive fruition: and the young pastors leading their flocks, pushing the boundaries of even that in their visions for the future. (Us old farts don't do visions).

And the world still spins, and all of this goes on under the noses of doctors and psychologists and teachers and therapists who haven't a clue. This naivette can also make some of them rich soil for planting seeds, they have no weeds of worries to choke it out, no stony assumptions that can't be changed and rob it of the waters of truth, no trampled paths where devils take away their common sense and fool them into false answers. I'll be darned if the seeds of advocacy can't produce 100-fold. That's what the truth does. It sets us free! False prophets may try to stand against it, and fool even the elect, but they will fail.

Hold fast, brothers and sisters! Do not grow weary of doing good. (I really don't mean to exclude anyone, these are two examples I am very familiar with.)

You know, the Autistic advocacy movement reminds me of the gospel. So many interpret it to mean different things. We branch off and hold meetings and always see what the other guys are doing wrong and go around poking people in the eye and make it all about ourselves. It isn't. What it is about is fighting those who use fear to frighten us into looking to them for answers, taking advantage of our fragile state. It's about the children beaten and killed and arrested by those who purport to love them or have their needs in mind. It's about institutions full of people who have no other place to go, and no escape from their tormentors. It's about agent provocateurs who are looked upon as experts, and experts who are looked upon as provacateurs. It's about quality of life for people who are not even given the grace of being seen as human or worthy of life by some who should know better, but just don't care.

I'll end my diatribe with a song.

P.S___ I even surprised myself with this one! It's about agent provocateurs who are looked upon as experts, and experts who are looked upon as provacateurs. DAMN...my big teen age bundle of joy is out of town with his dad. I love you, Ben!!!!! This is what happens when I am left to my own devices...come back safe and soon!!!!

.

The Blame Game

2010-02-24T11:57:00.001-05:00

Why do we put so much on our children's backs?

I've read a lot of things, but some things are just so p-r-e-c-i-o-u-s, you just never forget.

ABFH made a comment on one of my posts, about 2 Wrights making a wrong...When I think of Wright, I think of Peter and Pamela Wright, who gives us Wrightslaw...and changed a nation, if only in a legal sense. You can't legislate morality, you know. (The other Wrights had something to do with AutismSqueaks, or some damn idiotic notion--They collect guilty dollars to live in the lifestyle they have become accustomed via poor parents of autistic children. Think of Pat Robertson.)

I will never forget reading on Wrightslaw the advocacy article on school culture, specifically as witnessed by school psychologists. Listen to what they put on the backs of kindergardeners...let alone their parents. I'm going to quote parts of the article, to give you a good taste.

Dr. Galen Alessi, Professor of Psychology at Western Michigan University, conducted a fascinating study on school psychologists. Dr. Alessi’s study illustrates why so many parents have problems dealing with schools. Dr. Alessi’s article is "Diagnosis Diagnosed: A Systemic Reaction" published in Professional School Psychology, 3(2), 145-151:

The primary role of the school psychologist is to evaluate children to determine the reasons for learning and behavior problems. According to Dr. Alessi, when a child has trouble learning or behaving in school, the source of the child's problem can usually be traced to one or more of five causes.

First, the child may be misplaced in the curriculum, or the curriculum may include faulty teaching routines.

Second, the teacher may not be implementing effective teaching and/or behavioral management practices.

Third, the principal and/or other school administrators may not be implementing effective school management practices.

Fourth, the parents may not be providing the home-based support necessary for effective learning.

Fifth, the child may have physical and/or psychological problems that contribute to learning problems.

School psychologists from different areas of the country were interviewed and asked to complete an informal survey. The school psychologists were asked if they agreed that the five factors listed above play a "primary role in a given school learning or behavior problem." (Page 148) The school psychologists agreed that these factors, alone or together, played a significant role in children’s learning problems.

The school psychologists were surveyed about the number of children they evaluated during the past year for learning problems. The average number was about 120 cases (or kids). These numbers were rounded to 100 cases for each of the 50 psychologists for a total of 5,000 cases.

Alessi asked these psychologists how many reports they wrote in which they concluded that the child’s learning problem was mainly due to curriculum factors. "The answer was usually none. All cases out of the 5,000 examined confirmed that their schools somehow had been fortunate enough to have adopted only the most effective basal curricula." (Page 148)

Next, he asked how many reports concluded that the referring problem was due primarily to inappropriate teaching practices. "The answer also was none. All cases out of the 5,000 examined proved that their districts had been fortunate enough to have hired only the most skilled, dedicated, and best prepared teachers in the land." (Page 149)

Then, he asked the psychologists how many of their reports found that the problem was due mainly to faulty school administrative factors. "The answer again was none. All cases out of 5,000 examined demonstrated that their districts had hired and retained only the nation’s very best and brightest school administrators." (Page 149)

When asked how many reports concluded that parent and home factors were primarily responsible, the answer ranged from 500 to 1,000 (10% to 20%). These positive findings indicated that we were finally getting close to the source of educational problems in schools. Some children just don't have parents who are smart, competent, or properly motivated to help their children do well in school.

Finally, I asked how many reports concluded that child factors were primarily responsible for the referred problem. The answer was 100%. These 5,000 positive findings uncovered the true weak link in the educational process in these districts: the children themselves.

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)

Let me reiterate that:

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)

Once again:

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)

To be clear:

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)

BY GOD, IT IS OUR CHILDREN FAILING THE SCHOOLS!!!!!!

Uhm...once again psychology proves it isn't abuse when it comes from them.

pandora railroad

2010-02-20T15:22:00.001-05:00

ah, yes, as i said in an earlier post, my son was undergoing a bout of avatar induced depression/obession. going off of abFh's recomendation,my son wrote his own fan fiction. i do not know most of the story but i do know that the railroad is heavily involved in rebuilding the lives of the na'vi.(jake sully behind the throttle of a 4-6-2 steam locomitive. thats a laugh!)anyway the railroads name is (as given away in the title) pandora railroad. the logo is the railrods initals translated into na'vi.
p.s. the c is actually an e. also ben said that calling the na'vi autistic is not being fair to the na'vi as the attetion span required to hunt for food on a daily basis could not be achived by anyone with autsim.

i need...

2010-02-18T10:08:00.000-05:00

Ben had a difficult day yesterday. Dad runs a Homeschool History event monthly at the National Archives in Atlanta. We have a loyal group of homeschool kids who attend, and Ben has attempted friendships with others he found some commonality with. It's a good thing.

But yesterday I found myself too busy to sit with him, and act as his interpretor, of a sort. Those same friends invited him to sit with them, but because there were new people, he was too anxious to comply. So for hours, he was alone in a room of 80 people. I felt so bad.

Now, Ben hasn't accepted his autism diagnosis since 6th grade, in which time he saw enough of a gift to create a power-point on it's gifts. He hates it that I am on the Hub, he hates it whenever we bring up what he perceives as his "shortcomings"as a child. He is also suffering from depression, since seeing the movie "Avatar" and it's make-believe world of Pandora. Thanks to Michelle Dawson, I now see he saw it not as perfect world, but the world of the Blue people was a world where people of autistic thinking ruled, perhaps. He saw in the movie all the selfishness and seperation from others, and downright greed that serves as "normal" in this world today. This world in which the normal people are trying to make people with autism more like the bastards they are. Go figure.

I was so sad, so disappointed with myself for not being there for Ben. But the good Lord takes care of children and fools, and I figured something good would come of it. (When you are as big a ditz as me, this thought gives one comfort...)

I don't know why, but I brought up when Ben was young, and how I had read that there was a 50% chance of him being institutionalized--and only a 5% chance of him living independently. It was bullshit, but I didn't know it at the time. Of all people, Temple Grandin told me in the 60 second talk I had with here when Ben was 7, but she didn't quite put it in those words.

Good Lord, where am I going with this story? (so easily distracted...sorry...)

Anyhow, he let me talk this time. Maybe the day was so painful, he was open and not on his usual guard.

"You are a miracle, Ben/"
"Bullshit!"
"You are, you've come so far!"
"Bullshit!"

And I reminded him of the story where he first came to use the pronoun "I". After getting his diagnosis, I saw a blurb on the news about autistic kids using hippotherapy. Ben is adopted, and I took it as a sign, knowing his birth mother was so proud of riding horses since she was 3 years old.

Ben used to be so alert after riding on "Cricket". It was like the world opened up to him somehow. He had never answered a question directly before when I asked him driving home in the car, "Where do you want to go now, Ben?"

"I want to go to a movie." I always said we would have taken him to the moon.

He always used to hate it when I tell the part where it was a constant "Iwant...I want...I want...I want.." for the next week until I actually got tired of hearing it. But, it was a door of sorts, into another world where vocalizations had power.

"I need..." he said, after hearing the story. That's all, just 2 words.

I think we are going into a whole new level. May the good Lord give me strength, or whoever it is up there who hears a mother's prayer.

Is SPLD autism, or not?

2010-02-14T11:52:00.000-05:00

Many children with AD/HD, Asperger's, Autism Spectrum Disorders, Non-Verbal LD, Bipolar, etc. have co-occurring Semantic/Pragmatic Language Disorders.

Some authorities see SPLD as part of the autism spectrum of disorders while others see it purely as a language disorder.

link: http://www.mugsy.org/bishop.htm

First, we found that though many children with PLI did show some autistic features on the ADI, very few of them met diagnostic criteria for autism on both ADI and ADOS. Furthermore, many children with SLI, who had not been regarded as showing any signs of autism, did score in the autism range on ADI. This further supported the idea that there are no clear boundaries between these different developmental disorders: they shade into one another, and the diagnostic categories are something of an artificial abstraction (though necessary to ensure children get access to appropriate services).

Let's see...hmmm...

It is always necessary to determine whether the client has:

isolated semantic processing difficulties OR
isolated difficulties with the pragmatics of language use OR
a combination of the two OR
semantic pragmatic language disorder (SPLD) OR
SPLD in combination with another communication disorder that is NOT in the autism spectrum, for example, developmental apraxia of speech OR
SPLD in combination with another disorder in the autism spectrum, for example, Asperger's Syndrome OR
SPLD in combination with another disorder that is NOT in the autism spectrum, e.g., Attention Deficit Hyperactivity Disorder (ADHD).

WTF?????? Is it just me, or.......

Extra Info on House/Senate Bill

2010-01-21T21:12:00.000-05:00

/Dear People:

Click on link above, Extra Info on House/Senate Bill for some good stuff if you have time. I was reading an "examiner.com" homeschooling Atlanta area Mom whom I love...and a cross link was given to the Atlanta Special Education "examiner.com"

If you want more info, please give her a visit. I have not even had time to read it entirely, but it seems like a gold-mine just from first glance. I don't even know her name, but the title of the post is 10 Minute Activist! Keeping disabled children safe from harm in school -

Forgive me, sometimes I have to make a choice between starting a post, or waiting and taking a chance of forgetting all about it.

Truly yours,

Space Cadet Rose

Two Wrongs don't make a right: H.R.4247/S.2860 Contact Legislatures.

2010-01-21T13:56:00.000-05:00

Click two wrongs above to get ASAN's message about the House/Senate bill for the "Preventing Harmful Restraint and Seclusion in Schools Act".

I just got finished calling. Luckily, the first Senator's education division person was not there so I spoke to the machine. It really helped me to chrystalize what I think the problem is, at least in this wee little mind.

I have known all along that some forms of restraint are sometimes necessary, in a humanitarian way. To help a child avoid causing harm to himself or another child, I probably would be guilty of using a restraint that must be documented. In fact, I was nailed once, because even though I was trained to know better, a child began hitting the wall with his head, and not thinking I put him in a basket hold. His grandmother had to be called, the SRS notified, and it had to be documented. I was glad the system worked...you can believe I NEVER tried that again. But my intention was never to harm "Noah" (real kid).

My fear was never that kids would be harmed by teachers who had been trained, who always had the student's protection in mind, but that short tempered people would use violent practices to put fear in the heart of the kids. I saw this happen, too, because some people were short tempered, ill-trained, or just figured the kids deserved it.

School systems, institutions don't want to see H.R.4247/S.2860 pass, not because it doesn't serve the needs of the children, but because it may make them liable in a way they haven't been. Special Ed teachers are always in short supply because it's hard to find someone who wants to devote their lives to children who may not ever be a star by the world's standards. It's difficult, physically and psychologically. Parents in special ed can be extraordinarily unrealistic and demanding (been on both sides of that fence...) Then you get to the pay for aides, and add the same stresses...Often times less than perfect people are allowed to fill the posts in hopes that someone better will come along. All mistreatment must be kept quiet, less the school/intitution be in jeopardy.

WHO ARE WE PROTECTING: the child, or in the recent case of Zakh, the teachers (physically) or school (finacially)?? It's THAT SIMPLE!!!!!!!!!!!WHO ARE WE PROTECTING???????

Lets let a pedophile into a day care center.....it's no different than letting a child abuser into a school/institution. THE KIDS ASK FOR IT, DON'T THEY???

Sweet Jesus, what bugs me the most about this is, WHO ARE THE GROWNUPS SUPPOSED TO BE?
Do we abuse handicapped kids because of behaviors they may have that are beyond their own control/understanding, or do we be the grown-ups, and find ways that save the dignity of the child, the personal space they need to grow...We all make mistakes, but there are a WHOLE LOTTA DEATHS going on in special ed programs.

It ain't right. That's all I got to say...'scuse my shoutin'....

tHiNk!

2010-01-18T19:51:00.001-05:00

"Without personal boundaries, there is no way to experience your own identity and no way to measure your worth... " Ed Ised

Thanks Ed.

Happy New Year!!!

2009-12-31T21:30:00.000-05:00

Ben was busy looking up the words to a familiar song. I copy and paste it here for your pleasure! For those of you who choose to, raise a right guid willie-waught with us at midnight!!!!

Robert Burns: AULD LANG SYNE

CHORUS

For auld syne, my dear, [old long ago]

For auld lang syne,

We'll tak a cup o' kindness yet,

For auld lang syne.

Should auld acquaintance be forgot,

And never brought to min'?

Should auld acquaintance be forgot,

And days o' lang syne?

We twa hae run about the braes, [hillsides]

And pou'd the gowans fine; [pulled/daisies]

But we've wander'd mony a weary foot,

Sin auld lang syne.

We twa hae paidl't i' the burn, [waded/stream]

Frae morning sun till dine, [noon/dinner-time]

But seas between us braid hae roar'd [broad]

Sin auld lang syne.

And there's a hand, my trusty fiere,

And gie's a hand o' thine,

And we'll tak a right guid willie-waught, [goodwill drink]

For auld lang syne.

And surely ye'll be your pint-stowp, [pay for]

And surely I'll be mine;

And we'll tak a cup o' kindness yet

For auld lang syne.

Does a mother "know" things?

2009-11-08T13:19:00.000-05:00

It seems things have changed so much since Ben was small. When he was first diagnosed as PDD at age 3, I read ALL I COULD about autism, and actually had a deal with the library to increase the size of their "autism" books from about 10 to about 30.They were very kind to pay for it all, and never turned down a request. In those days, I read so much about hypersensitivity, and not so much about behavior.In fact, when I suggested ABA because of Catherine Maurice's voluminous book pages regarding teaching language I was told it was "cruel'. My, my, my, how things change. I guess the dying art of behaviorism found a new audience. Even Daddy Skinner, who purportedly said he was going to raise his child on it, couldn't do it.

Here we go. The things that stick in my mind are singular incidents when I caught sight into this "autism".

Things that continue to make me say, "Hhhmmmm....". Am I the only one who sees them? Am I too hovering, or is it my curious nature?

You know, it was a mother who kept bugging the chemist who discovered the problem of her children as an inability to rid the body of phenylalinine, which served as a poison to them as it built up. Phenylketonuria (PKU) was unheard of. Ben's speech teacher in developmental pre-school actually had 2 sisters who died early deaths in institutions (one at age 11) because it hadn't been discovered that decreasing phenyalanine in their diets could have allowed them somewhat normal lives. Every child had not been tested at birth for PKU or other diseases which could have led to special diets and very mild manifestations of the disease. When I studied PKU in my special ed classes in college, I found it simply amazing that this form of severe mental retardation could now be avoided in many cases..

We are fearfully and wonderfully made, and so complex that none can begin to understand the whole of us. Observation by a mother led to a treatment for a debilitating disease. She "smelled " in the urine of her children after they ate what no one else seemed to have noticed . Other children at the institution were also tested. This treatment didn't arrive in time to save her children, but many have been spared a more difficult life and early, early death. Was that mother not accepting her children the way they were? I don't think it had anything to do with acceptance or anything. It was just dumb luck. Hell, if science (observation, not heirachy) would come up with something today to make me more capable, I'd be first in line. Like Elizabeth Moon's book, I'd be there in the speed of dark!!

Kristina wrote an article on Charlie where she brought up "neurological storms". This euphemism for a type of neurological incident has no scientific corollary as defined as it's somewhat similar cousin in the electrical manifestations of epilepsy...ie, we don't know what happens or why...and I've seen it is increasingly used on autism forums. Is it chemical? I often see fear manifested in my son's eyes when he meets with unfamiliar situations...are his feelings of fear hyperacute because of a build-up of a particular protein? Is my own propensity towards depression biologicallly based? There are so many diseases that have already been discovered that are biological buildup of toxic metals---Wilson's disease and copper, Ben's own god-father died of Hemochromatosis (iron overload), undiscovered. When his liver gave out, they said it was because of alcoholism, which he drank to ease the pain.. Both of these diseases are far less dangerous when treated, and WON'T lead to early death, if they are.

Ben's Godmother Mary had a sister, Judy, who I might guess was autistic. Her family always felt that one day a medicine might give Judy the ability to talk, to supply whatever it was her brain wasn't manufacturing. Mary's mom was my mentor, and the reason I went into Special ED. I always saw her as a mother first, not a teacher. She started a school in a local church for kids like Judy long before Public Law 94-142 mandated "free and appropriate education". Most kids were sent to institutions in those days, and families told by doctors to just "forget about them". Of course, they never did.

These things that I saw, when Ben was younger, always made me wonder if some forms of Autism aren't a condition of the brain, like epilepsy, and thus not "mental illness" any more than epilepsy, Parkinson's, or dementia, Alzheimers and adhd are, and thus, wholly untenable to "talk therapy" or "behavioral therapy" or " cognitive therapy" or any other BS put out by APA any more. They can be wholly accepted as a difference beyond the control of the individual, they are NOT diseases of the soul. The way person's suffering from them are treated, can, however, be soul destroying. Medical or Psychological attemptst to "cast out demons" are no more than witchcraft, only to be believed if the shamans practicing them are good enough actors.

I have a few examples that always made me wonder while Ben was growing up. Vignettes that I shall never forget!

When he was about two years old, I remember seeing him shaking his glass of water that had been handed to him. "Isn't that cute? It's like he's swishing the ice in his martinee!" He couldn't hold on to the glass without trembling, I realized later on. It was a hand tremor, like in parkinson's. When he later was shown to have dysgraphia, it kind of chrystallized. He had always had reduced strength in his extremities. His toe-walking was very similar--he couldn't raise his feet--he didn't have the strength or muscle control or whatever it took. Even today, his feet fall as he walks. Why? What else has been affected?

Once, I saw how Ben's brain worked as clear as day. It must have continually been "shorting out"---much like you used to see on the adult ADHD commercial a while back where the womans attention continually changed channels. He had spilt water on his bed, and, like the good boy he had been taught to be, he went into the other toom to get a towel. He came back to his bed empty handed, reached down and felt the wet bed, and headed out again to get a towel. Coming back empty handed, he felt the bed and then set off for the last time, got a towel and set it down on the wet spot in his bed. I tried to explain to his second grade teacher that this must happen to him hundreds of times a day. Almost like a pre-mature senility---I've had that "what am I doing in the kitchen " feeling. I can't imagine dealing with it all the time as a child while your peers coast through. The power it took to focus, had to have been too much to deal with all day long at school. And of course, he was doing it on purpose,,,,,,,,,,,,,,,,Oh, my gosh I look back and think of how tired he must have been, and then he would work on homework for hours at home. This inability to focus was only reiterated recently when Ben told me he would have to work with trains. It would be the only way his interest would be high enough to focus in order to hold a job. Wise, that kid.

What do you know about your own child? What has given you pause, even when your doctor told you it was nothing? What do you see as the disability, whether or not it is related to what you've been told?

Wond'ring Aloud

2009-11-08T11:02:00.000-05:00

I have started this post many times...created long diatribes of discussion within my own psyche...do you love your child as he is, or not? He can be a pain in the rear, but so can I! I pick on him mercilessly and he does the same to me, because if I can make him laugh it is like music to my soul. Magic, pure magic.

You understand, I don't want to change that part of him. At all. If autism is what makes him so funny, I'd rather he kept it. All of our kids, whether they speak or not, have a personality that transends all that. It transends even the disability label...we love their very essence, as mothers. Their quirkiness, their gifts, their strong minds, in spite of what they have to deal with in this life.

But sometimes you notice... things, for lack of a better word. It 's just that nit-picking part of motherhood, that says, "Is this out of order? Should I be concerned?", the same thing that drives you to stick a cotton swab in their ears. God forbid they have waxy ears.. You don't forget these things...Surely, "this" is a piece of the puzzle, which is more indicative of how little science really knows about autism than a dilemma of the autistic self. Talk about projection: We don't know so it must be their fault. Like children who can't be taught by typical means...there's something wrong with them, not the system.

When Ben was just days old, he missed his mother's voice. No one will change my mind about that. He was looking for his birth mothers voice, and I didn't have it! I always thought I was crazy to feel that way until I read just today that a baby responds to his mother's voice in the womb, and will listen for her voice above all others when born. (Ben was adopted.)

There are other things I noticed. This was long before the current meme of autism as a disaster came up. We parents were actually looking for similarities in our children to begin to answer the question: What is autism?

I promised Dr. Chew I would write about these moments that gave me pause, when I seemed to have an awareness of something, vague as though it may have been.

Autismspeaks:

2009-11-04T10:03:00.002-05:00

Self-injury and affect regulation.

2009-10-24T14:33:00.004-04:00

I am currently obsessing on self-injury---especially among studies that doen't neccessarily include autism or intellectual disabilities. Abfh is right. There's a lot out there. It is a very common phenomena. I thought the following gave a logical reason for it--to ease bad feelings (negative affect). With a synopsis of 18 other studies, the author concludes that it helps them feel better (aka affect regulation function).

1: Clin Psychol Rev. 2007 Mar;27(2):226-39. Epub 2006 Oct 2. Links

The functions of deliberate self-injury: a review of the evidence.Klonsky ED.

Department of Psychology, Stony Brook University, Stony Brook, NY 11794-2500, United States. E.David.Klonsky@stonybrook.edu

Deliberate self-injury is defined as the intentional, direct injuring of body tissue without suicidal intent. The present article reviews the empirical research on the functions of self-injury. This literature includes self-reports of reasons for self-injuring, descriptions of the phenomenology of self-injury, and laboratory studies examining the effects of self-injury proxies on affect and physiological arousal. Results from 18 studies provide converging evidence for an affect-regulation function. Research indicates that: (a) acute negative affect precedes self-injury, (b) decreased negative affect and relief are present after self-injury, (c) self-injury is most often performed with intent to alleviate negative affect, and (d) negative affect and arousal are reduced by the performance of self-injury proxies in laboratory settings. Studies also provide strong support for a self-punishment function, and modest evidence for anti-dissociation, interpersonal-influence, anti-suicide, sensation-seeking, and interpersonal boundaries functions. The conceptual and empirical relationships among the different functions remain unclear. Future research should address the measurement, co-variation, clinical correlates, and treatment implications of different functions.

The picture? I remember Bettleheim and his comparison of autistic children and Holocaust survivors. I came across info that children who survived the Holocaust were referred to as "Les Enfants Terribles" , which was also a title of a book written in the 30's, that was made into a movie and a play...but that has nothing to do with what was said. Following is an excerpt from a website teaching children about the Holocaust from the memories of adults who were finally able to give their stories, the stories of survival, from when they were children and prisoners of Nazi camps.

They tried to resume normal lives, but they were very angry children and were called "les enfants terrible." Once they destroyed all their furniture in their dormitory. A doctor told them that it would be best for them to try and forget all that they had seen and to move on with their lives. Robbie thinks in retrospect that this was the right advice at the time. No one wanted to listen to their stories, and in any case, he felt it was too difficult to explain. Those who continued to dwell on their experiences and the fate of their families ended up in psychiatric hospitals.

One day, the survivors of the present day "bedlams", present day "death camps" may no longer be able to tell their stories. There has to be a better way. When I was raising my son, praying over him in a hope that he would change....the heavens spoke to me that it wasn't him who had to change...IT WAS ME! The kids being "treated" (little different from any other type of selfish prayer or shamanism, in some ways....) today do not need to change. We have to change how we see them.

It doesn't just happen. It's work...soul work.

I just go on and on and on, don't I?

Okay, here's the last tangent. Remember "Spit Boy", who I hope I lovingly introduced the last tome...or tomb, I'm not sure. They all seem to run together...

The one time nana-nana-nana-nana-nana-nana-nana-nana SPIT BOY! came to school without medication, he screamed almost the entire time. And I remembered this morning that on that day he kept biting himself constantly and crying. It was as if he was in a war zone, being constantly bombarded! We were used to ornery smiles. His medication was ritalin, I'm not sure what that means, but I'm pretty sure it was. How it kept him out of the war zone, I can't imagine.

You know, it is so hard to keep a focus. I hope you'll forgive me.

Empathy or Evil, I don't know.....

2009-10-23T08:30:00.000-04:00

Watch out...I am putting it out there. I may tick some of you off. I will try not to make an ass of myself! I'm just trying to understand.

I was so worried about Aspie-Web-Net. At least we know he is alive. What he was going through was horribly hard on him. I have been so depressed before I could have cut my wrists, in fact, I was thinking the yesterday that know I know why people cut their wrists. Not because of the depression, per-se, but because your blood feels so thick, like it might be suffocating you. I've only been that depressed once in my life, and it was years ago, before Ben.

Just thought I'd let y'all know that, so my post wasn't mis-perceived. Thanks, Ed. My brain is like a train---once it gets on that track and moving forward, there's no changing direction. I was obsessed that someone might die. I don't even know Aspie Web Net. But I'm glad he's alive. Depression is not a nice companion at times. It is so 'effing' intense..

So, anyways, the other thing I have been obsessing about this week is how to change the "meme". I'm sure you got the memo from Autism Speaks. Autism is a MONSTER.

And all I can think about is how parents can use "self-abuse" and it just stands out there like the elephant in the room.

It's why Lovaas nearly got away with murdering the soul. (God knows...) He could say," look here" and justify abuse so much so that his methods hit the pages of a major publication, and he's a god-damn hero....Like a child who is beaten into submission, you may not see the behavior you are trying to extinguish, but you have created something much worse because the child has two choices. The abuse will come out against others or against him/her self, unless they are blessed with great courage. Abuse is not discipline, just like rape is not sex.

And I got to thinking about when I wanted to cut my wrists, to let the blood out, to ease the pressure. I felt like my body was in a vacuum chamber, and the cutting would have only allowed the air back in. It wasn't really to die, per se, but to obtain relief. I don't know if I'm making any sense to you all. I'm just saying, the only time depression nearly took over my life...it was as though dying wasn't even a part of it, I just wanted to relieve the pressure!!

Autism, it seems, can bring everything into hyper-arousal. Thoughts, feelings, sounds, sights, smells, tastes...can be perceived as crushing, maybe, or like depression, just intense to a degree people who don't go through it may never understand.. And the impulse to relieve the pressure must be great. I think this is what is misperceived by parents. It's not to "get even" or punish them,or even oneself. It's just that the intensity begs relief.

I'm sorry, Kristina, but I think of Charlie. That damn mask would have been suffocating to me.

Ay, I'm full of it.

I remember a child who was in my PMD classroom. I have been thinking of him every day. "Spit Boy" sent the school in a tizzy because he would spit at people in order to be left alone. He had damn good aim, and could shoot it across the room, and he would just laugh as teachers scurried to get out of his way.
One day his mama forgot his pills, and I saw the suffering he truly went under. He shook, his overstimulation was so intense...he spit constantly, and there was no laughter. He had a fear in his eyes like he was being overwhelmed, and his very life was at stake. He didn't cry, but he guarded himself as though the world would engulf him. It had to have been exhausting for him, it was exhausting to witness.

Since I have been on the Hub, since I worked at a "institution", I have tried to understand self abuse. This is the only time I have come close, in remembering something that happened 20 years ago, and only consisted of a few hours of my life. I'm sure there are many, many more examples in my life, but this one crystalized. It's a good thing nobody reads my blog....

Richard Attfield and FC (Facilitated Communication)

2009-10-14T16:35:00.001-04:00

I initially entered a blogpost about facilitated communication. There were many skeptics who personally knew as much about facilitated communication as Marie, my beagle, but they DID know that it was not backed up by science. And so they simply dismissed it.

To me, few had anything, anything of value to say, except Larry---champion of the Underdog, and Richard Attfield, who spent most of his life wasting away in special ed classrooms until he learned how to get his mind out via facilitated communication at age 15. (He could not speak to communicate.)

He had help to direct his hands (weakened by Cerebral Palsy), and keeping on task. He now has sufficient strength/ability to type on his own, and fights to have other people realize that facilitated communication is a necessary step for some to type on their own, and the only way others can put their thoughts out. He is fighting the naysayers, as he has been fighting them all of his life.

Why should I care? Because of Paige, a student I had in the PMD classroom my first year of teaching. Until 2 teacher aides started teaching kids in the class to read, they had never been exposed to learning. Paige showed me some things, and in talking to her mother, we are convinced she is an average kid. She has a normal mind, and a very, very, very uncooperative body, like Richard, because of Cerebral Palsy.

Paige, dear, if you ever read this, Richard is just as kind and good as Kirk, remember him? You might have Mom read his story. God love you always , I will never forget you, and one day may get my rear in gear enough to figure out the next step, where we need to go next.

The picture above is the front cover of the book where Richard and others discuss their facilitated communication. All have at one time used it, some still do. And people try to say their lives are lie because there is no science behind it. To me, that's just rude.

2009-10-09T10:09:00.000-04:00

Hope Springs Eternal

2009-10-08T20:38:00.001-04:00

Hope Springs Eternal:

"Hope springs eternal in the human breast;
Man never Is, but always To be blest:
The soul, uneasy and confin'd from home,
Rests and expatiates in a life to come.

-Alexander Pope,
An Essay on Man, Epistle I, 1733"

I always wondered where that expression came from. I was rather surprised to see the whole expression. Before my father, the wild-ass whiskey drinking son-o-bitch died, he told my sister Teresa he was going "home". If Rags said he was going home, you can bet your bottom dollar it exists. I miss you, Daddy. You worked your ass off when you were here, you deserve a rest. See you someday, hopefully not too soon!

Love, Rose

PS: Help me to help Mom.

Love versus Fear....Bible Study for Autismspeaks!

2009-09-26T18:14:00.005-04:00

Bible Study for Autism Speaks:

Fear hath torment. Because it fills us with forebodings.

NIV© There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
NAS© There is no fear in love; but perfect love casts out fear, because fear involves punishment, and the one who fears is not perfected in love.
ISV© There is no fear where love exists. Rather, perfect love banishes fear, for fear involves punishment, and the person who lives in fear has not been perfected in love.
GWT© No fear exists where his love is. Rather, perfect love gets rid of fear, because fear involves punishment. The person who lives in fear doesn't have perfect love.
KJV There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love.
AKJ There is no fear in love; but perfect love casts out fear: because fear has torment. He that fears is not made perfect in love.
ASV There is no fear in love: but perfect love casteth out fear, because fear hath punishment; and he that feareth is not made perfect in love.
BBE There is no fear in love: true love has no room for fear, because where fear is, there is pain; and he who is not free from fear is not complete in love.
DRB Fear is not in charity: but perfect charity casteth out fear, because fear hath pain. And he that feareth, is not perfected in charity.
DBY There is no fear in love, but perfect love casts out fear; for fear has torment, and he that fears has not been made perfect in love.
ERV There is no fear in love: but perfect love casteth out fear, because fear hath punishment; and he that feareth is not made perfect in love.
WBS There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth, is not made perfect in love.
WEY Love has in it no element of fear; but perfect love drives away fear, because fear involves pain, and if a man gives way to fear, there is something imperfect in his love.
WEB There is no fear in love; but perfect love casts out fear, because fear has punishment. He who fears is not made perfect in love.
YLT fear is not in the love, but the perfect love doth cast out the fear, because the fear hath punishment, and he who is fearing hath not been made perfect in the love;

Dialogue in the Dark.

2009-09-11T16:19:00.003-04:00

Ben and I got free tickets to go to Dialogue in the Dark in Atlanta, and discovered what it felt like to be totally blind for one hour of our lives. We went through a series of rooms, each portraying a common venue: one was a grocery store.Dependent only on our hearing, sense of balance, touch,smell, and our white canes, which we had been taught how to use...and our beloved guide who we came to trust more than any of us had probably trusted any stranger in our lives.

A group of 8 of us were led through a series of what seemed like winding paths, but I'll never know because my sense of direction was gone except for left and right. Walls were comforting! We tried to listen for others voices so that we didn't run into them, again...it was like "Keep talking so I know where you are!" Ben and I kept grabbing on to each other, we hoped! Once, the little poop says "Excuse me, ma'am!" in a deep voice as I grabbed an elbow and said "Is that you?" I could have died as other's laughed. It was kind of funny.

In the "store" our guide asked if we could tell where we were, as he did in each room. Shuffling with our canes and feeling out with our hands to try to grab on to something familiar, hopefully not another person, we picked up apples, onions, lemons, cans of food, and what one man described as what he "hoped was a carrot"! And each time the guide led us through the next door.

At this point, I was getting tired of not being able to see. I wanted to say, "Somebody turn on the lights!", but knew we weren't done. The end was the most surprising. Our guide was totally blind, and answered any questions we had about blindness. We, who take for granted our sight, were dependent upon a man who had none.

I've been through little "empathy" sessions before. We put vasoline on our glasses and got around in wheelchairs in a nursing home to sympathize with the plight of the old. But we weren't dependent on them. We didn't "look" to them for help.

Way too cool.

Front Page Atlanta Journal Constitution

2009-07-27T15:49:00.004-04:00

Jonathan King, who played ball in his earlier years, was 13 when he hanged himself in November 2004 in Gainesville.

How we got the story (from the article--Rose)

Details on Jonathan King’s enrollment at a Gainesville psychoeducational school and his suicide there came from court records, school documents obtained by his family, and interviews with his parents and their lawyers.

A reporter also examined inspection reports of psychoeducational schools by the Georgia Department of Education, legal filings by parents of children enrolled in the schools, federal and state reports on special education programs in Georgia, and a history of the state’s psychoeducational schools by the director of one facility.

Also, see

PARADE MAGAZINE

cool trick for multiplications tables 6-9

2008-12-11T09:47:00.001-05:00

Communication is SO important./ dangers of ritalin

2008-12-07T11:37:00.004-05:00

About a year ago, Ben told his Daddy and me that he was seeing/hearing a "friend" who told him to do things. Because I freaked when I heard "autism", I was adamant that I would not freak at the idea of "schizophrenia". I would just accept it, and keep an eye out for "delusions". After all, schizophrenia is the one thing psychiatry can't touch...an enigma that cognitive therapy or medication can't cure.

Now, the reason I am writing today is because of a conversation we had last night. At the time Ben went through this, I noticed that delusions were a part of the side-effects of Ritalin. I initially tried to remedy it by decreasing his dose. Things got tougher at school, because of the lack of behavioral constraints that "vitamin r" gave Ben. But I felt it was the first line of defense, just to be sure, to decrease the dose.

So I have been holding it in my heart that Ben was possibly schizophrenic. When he stayed up late at night and talked out loud to the t.v., I tried to wake up enough to listen to what he was saying, presumably to "her". My weak little mind was looking for answers, wondering why Ben seemed so sensible all the time. I thought he was hiding it really well...

So last night, he has me read a story he is writing about a boy and a girl caught up in a train simulation exercise, looking for clues and answers to escape. He warns me it has taken on a sexual tone, and not to read it. I think I might read it in the morning while he is sleeping...but I promised him I would not, and try to hornswaggle him into letting me read it, which, to my surprise, he allows.

" I don't really care for the sexual stuff." I tell him, as it is my duty being raised a catholic.

I bring up the episode of a year back.

"That only happened for about two weeks. I've never seen or heard things since then!"

And I know he is telling the truth.

Can you imagine if I had freaked out of fear? He would have been put on new meds...who knows how he would have reacted, and the downward spiral could have desended us into a hell of who knows what.

Fear sucks. Communication rocks!

Forgive me Ben, but sometimes when we go through things, it is so others can be helped.

It's beginning to look a lot like Christmas...

2008-11-26T19:54:00.002-05:00

It's not me, it's Ben. He has always loved decorating for Christmas. He usually doesn't start until after Thanksgiving dinner, but this year he has been checking out the lights for missing bulbs, etc, for about a month. He and Dad put up this little pretty today. One gal brought her kids to see it, ages 1 and 3. They really enjoyed it. He was so proud of his design!

The hedge in front of the apartment hides some of the lights. I'm not sure he's finished, but he's tired for today. He's my joy boy, and he's giving it out to the rest of the apartment complex!

Fear of the Future

2008-11-22T09:21:00.004-05:00

Ben has shared some things with me lately. I seldom, if ever, get really personal on this blog...I don't want it to come back to haunt him or me.

Maybe it is a teen thing, but this omnipresent thing called "the future" scares him. He is afraid he is unemployable. He has always had this dream to be an inventor since the first grade...and it's the only way out he can see. A regular 9 to 5 is just not his way.

I only survived employment with the help of anti-depressants. It wasn't really that I was depressed, but that I was enormously sensitive to criticism, and took it all straight to heart. The anti-depressants served as a "buffer zone" between me and the world. I would equate it with an intense shyness, and an intense fear of failure. I see some of the same shyness/fear of failure in Ben.

He was on ritalin to help him get through school without being in an enclosed special ed classroom. I KNEW they went much slower, and something told me he was very bright. It also helped him control his outbursts, gave him a buffer between his reactive feelings and the world, much like my anti-depressants. (I wasn't medicated through school, there never was a need in the "old days". I was a little off kilter, but had many friends, some of whom I still have. I was thought to be very bright...but "not living up to my potential". The same has been said of Ben.}

Well, what I need to know is, how can I help him to have faith in himself? Do any of you use drugs as a buffer? (I am thinking about having him see if he has more faith in himself with the addition of ritalin, like I use anti-depressants. I think they kept me out of a lot of trouble I would have caused for myself without them.)

It's not as though he doesn't have good role models. His 5th grade teacher was different, probably ADHD, and loved him into success and a stress free year. She believed in him like NOBODY's business, like nobody before or since. For 3 years, we were totally blessed to have a psychiatrist who was ADHD himself, and who never went into any psycho-babble, he just encouraged Ben and told him he was "the hardest worker he knew." We (both of us!)got out of his sessions uplifted. No blame, no "better way" by someone who "knew better"....Just encouragement! We loved them both, and Ben at one time said he would like to be a psychologist like "Dr. Luke" to help other kids like him. He was that good! Granny had trouble in school, and has always believed in Ben. Dad was a "late talker", and sees a lot of himself in Ben. So do I.

I know you all are extremely busy...but if you have any good advice, please leave a comment if you can share it with the world, or email me via the hub ring (jrbwalk).

God bless...Rose

Autism Experts

2008-11-13T11:51:00.004-05:00

Who are the autism experts? I googled it, and if you hit the link above you'll see who comes up first. (Autismsqueaks comes up second...surprise, surprise).

I know it's goofy, but imagine an alien comes to this planet, and becomes enraptured with this thing called "woman".

"Tell me more, what is this woman?"

Would we send them to a gynecologist to explain the inner workings of a woman's body, a doctor to show the physical manifestations, a psychiatrist to show the issues of being woman,(all the previous from a male point of view), let them read books on women's issues, give them a copy of playboy, talk about women's suffrage, have a man talk about his wife, have children talk about their mother; would we, in essence, avoid a snowballs chance in hell that they could actually meet and talk with a woman, have their questions answered by a woman...would we only allow a societal constuct of womanhood to escape?

Do you think they'd ever really figure out what this thing, this "woman", was?

Maybe, we could have a token woman who was only allowed to say things about herself that were previously cleared with all the above "experts" first. She would say things that made them feel comfortable, because that's what "good" women do.

i'm jus sayin....

What do these people all have in common?

2008-08-24T08:48:00.001-04:00

Why others homeschool

2008-08-24T08:00:00.004-04:00

I thought this graph was interesting. The source is the U.S. Department of Education, so it's pretty kosher, not something made up to encourage homeschooling. As I look at it, the reasons why I am homeschooling (which I can't even truly figure out) start at the top of the graph and go down three steps.

1. Child's special needs or disability . School has always been so hard for him, but until last year the little bugger "never gave up, never gave up, never, never, never gave up."(Winston Churchill, who was a "poor" student.) When he was in grade school, Mr. Butler, his resource teacher, had come from the high school. He said he kind of liked working with the younger kids because they hadn't given up yet. Mr. Davis told us at the beginning of 8th grade, he thought it would be Ben's banner year, that he would take off. As it was, he barely eeked by, earning D-'s instead of the typical A's and B's.

Also, I used to work up to 4-5 hours a night so Ben could complete his homework. In fifth grade, he had a wonderful teacher, Ms. Hunt, who let him do all his work at school, while on Ritalin which helped him focus. We never gave him "vitamin r" at night, although it was tempting to complete homework, but he didn't sleep well the way it was, and it would have been necessary to give him another drug to go to sleep...better living through chemistry! Ms. Hunt was a closet LD student, I'm sure. Like Ben's only real psychiatrist, who had ADHD himself, she understood: she gave him every break posssible and did everything to UP his sense of self. She believed in him, I think she saw a lot of herself in him.Well, anyhow, after Ms. Hunt, I never again put in those hours. Ben's dad, by default, became his "homework" partner. I just didn't have the desire.Besides, it felt like child abuse, what I had done in the earlier years. In the first 5 years (k-4), he never missed one homework assignment.

2. Student has behavior problems at school.: Ben had never gotten in trouble in school. In 8th grade, he was suspended twice, a third time was in the books, but it was the end of the year.

3. Other problems with available school. Gas was on it's way to $5 a gallon, and the hour and one half we would spend each day driving him to school, with me unemployed, was not looking good. Blame it on the Enron loophole.

4. School doesn't challenge child. Ben's IQ was 79 at age 4, 99 in second grade, 116 in third...it's not supposed to change more than 20 points over a lifetime. So much for that. At Ben's IEP in 8th grade, I wanted the psych to give him an IQ test. He said it would keep Ben out of Special Education, and that I didn't want to do it. Ben learns a lot by watching t.v. Like his dad and his reading, he watches factual Science, mechanically oriented shows. I think that's why his IQ is so high. Environment...t.v.!!!!!!

So, in comparison to others, I am homeschooling Ben for 40.3% of the same reasons as other people are homeschooling their children. And there is no way in hell I am becoming the HOMEWORK NAZI in order for him to get through school. Bleh, just thinking about it....
S

Teaching in pictures...why I'm home schooling 2

2008-08-23T10:09:00.007-04:00

Ben has been given a label of PDD, Educational Autism, PDD-NOS, Aspergers, ADHD, and the newest one, ED (emotionally disemboweled, er disturbed)...he shows signs of dyspraxia, dyscalculia, dysgraphia, and dysentery (?). He went to speech for 6 years, OT for 6, and the Resource Room for 9.

Now, I'm not saying that I despise the public schools at all. Ben found them torture in the second grade, his words (his first apparent opinion of school), but many people have been so good and loving to him...there's just no way I can put blame for anything on the public schools. They did a remarkable job, and I wish I could write a big thank you to all his teachers, who almost always went above and beyond the call of duty. I know many of them hold Ben dearly in their hearts. And we'll never forget all that they have given. I'm crying now just thinking of it...something I don't do often.

It just snowballed, our decision. It started with wondering how we were going to cough up the $2000-$3000 for gas this year, since I had quit my job in February. You know, this summer when oil was at $150 or so a barrel? (Too much information, I know...) His new school was going to be even farther away than last year. I know he has "short bus" rights, but he had never taken the bus, or any bus, since preschool.

That was the beginning.

My husband said,

"Why don't you homeschool him?." You're not doing anything."

I don't mean to be facetious

2008-08-22T12:37:00.000-04:00

I had a whole "big-ass" writeup of the meaning of each of the pictures, but blogspot only put the pictures on . I will give explanations later....sorry!

Teaching in pictures...why I'm home schooling

2008-08-22T11:58:00.017-04:00

Homeschooling, day 1

2008-08-21T12:32:00.003-04:00

Ben has 33 more minutes to go in Geography 9, his first class. He has to read pages 2-13. We joined a very good homeschooling group, and though it is religious in nature, we are not going there. It is state accredited, has very strict standards (ie, all classes much teach to state standards), and although it uses Bob Jones University Press crafted books, they are made here in South Carolina and are immediately acceptable. If you just skip the evangelizing, they are no different from many other books typically used in our schools. I also got most of them for less than half price on ebay. The cost for joining the group was about $300, and they make sure you are kosher. They also offer help figuring out your program, but with both of us being experienced teachers...they only offered a couple suggestions. I can see where this might be very overwhelming to go into blind. Teachers really do have a lot of stuff to do to assure accountability.

Ben has 24 more minutes to read.

We are teaching 9th grade Algebra I, Geography, P.E. (dad was a coach), French I, Health (1/2 credit), English I, and Physical Science, for a total of 6.5 credits. He must have 24 credits to graduate from High School to be accepted in college, with 2 years of Foriegn language, from my recollection. He already has 1/2 credit from a typing class in Middle School. So, at the end of this year, he will have 7 credits under his belt. Woo-hoo!

I know I am boring the hell out of y'all, but this is SSSSSOOOOOOOOOOOO different for me, and kind of exciting!

Ben has 18 more minutes.

The picture above is the only one I could find of the old bat that's teaching him, looking teacherly.

Ben has 12 more minutes.

I think I'm gonna like this!

Amazing Ben

2008-08-14T12:21:00.002-04:00

I am very excited about something that is coming up. We decided it wasn't worth it to spend 2 or 3 thousand dollars to drive Ben to school. (I know they were supposed to pay for it...they didn't and we let them get away with it.) I didn't like the idea of him being labeled "emotionally disturbed" when we all know he's just wired different, kind of like our "poor" ADHD super-hero in the Olympics, Phelps. Ben barely passed last year, and there's no doubt we would be getting back to spending 2 or 3 hours on homework, most of it busywork. Plus that, Joel and I both used to love learning, and Ben is a natural at it if you cut him slack. I see only good in him, though.

I had a child I taught in Chapter I, for special help in reading and math. "Fast Eddie" couldn't spell, write, or memorize basic math facts. He was the most brilliant student I ever had. I told his mother I would be proud to have a son like him. From my mouth to God's ears..........Finally, a teacher in high school recognized it. Eddie's semester test in Biology was this one question: "Tell me what you've learned so far this year." God bless Mr. Artez!

I'm going to let you in on a little secret. I think I am a good teacher. I meet the kids exactly where they are, and give credit for their ability to rise above their weaknesses, and I'm always looking for their gifts. I'm a bit of a simple lady, but I know I have to give as much as I ask. I don't have a problem with calculators, oral tests, taking dictation, or anything else that will help. Social Skills? Maybe the kids that are calling Ben a "retard" need them more than he does.
I think he will catch up in time. Whatever it takes to get by. Mostly, I hope he is happy.

When Ben was three years old I was scared to death he would lose his language. He never spoke anything that wasn't scripted until the 4th grade. He has risen so far and above anything I worried about for the first 10 years. I don't worry any more. He is amazing. I am so blessed beyond words!

Teaching learners with multiple needs blogspot

2008-07-01T16:30:00.002-04:00

I selfishly use my blog for a repository of bookmarks I am afraid to lose track of. And to voice my opinion. Neither one of these are particularly interesting to the rest of you. I'm sorry!!!

There is a blog that a teacher has that includes a lot of free assessment tools, companies who deal in AAT, and common sense. I am studying to pass a Praxis II test in Severe and Profound Mental Disabilities. It's really tough to do without a college textbook, and it's going to be 5 essay questions to be finished in 1 hour. I'm not good at essay questions...and at age 50, the Alzheimer's my mother suffers from is starting to look like a genetic trait...

"Be quiet, please!"

2008-06-12T14:38:00.003-04:00

My mother told me never to use the words, "shut up". We were to say, "Be quiet, please!" I love my mother!!!! I also apologize for naming my previous post "Shut up". It was very rude of me.

When I was thinking of communication and autism, it reminded me of Christschool's video of his son. I absolutely loved this video, mostly for the cute babe in it, but also how those eyes look to his father. I haven't seen anything to compare to it. They just make popcorn the jiffy-pop way,

While "just being" with his son, he makes priceless point. I hope you understand it. "Cost of therapy, $1"

I will look for the link to it.

"SHUT UP!"

2008-06-12T09:29:00.005-04:00

Maybe the "autistic" classroom should be the quietest in the whole school. This makes me speechless!!!

Here's a teaser:

The importance of using a minimal speech approach
Many children with autism, like those in this study, experience extreme difficulties in understanding speech and use little or no speech themselves. Several teachers commented on the ways that some children "just tune out from speech and voices" or "definitely cut out any language input". When adults used everyday speech with these children, they often withdrew from the social interaction by turning away, protesting or simply by "switching off".

The essence of a minimal speech approach is straightforward. It means that adults should consistently use only one or two relevant concrete words when interacting with children who understand little speech. Figure 1 highlights the difference between minimal speech and everyday speech in a snack session.

A minimal speech approach can be highly effective. When professionals used little or even no speech with children in this study, using non-verbal means of interaction instead, then children became more socially engaged and communicated more often. Maintaining a consistent minimal speech approach is often easier said than done: even when professionals recognise the need to limit their speech output to key words alone, it is often hard to keep this up in practice. Appropriate training and supportive monitoring will be necessary to ensure the consistent implementation of this approach.

In addition to the consistent use of a minimal speech approach, there are several other specific strategies and approaches that can be used to promote spontaneous communication.

Below are more "pearls of wisdom" from the site. I found this so very exciting that I had to share. I know next to nothing about this site, but I found it intriguing:

Case study 1: Jo
We observed Jo, a five-year-old child with severe autism and no speech, for a full school day. During that time, he communicated only 39 times - an average of seven communications per hour. Nine of Jo’s communications were to request food or objects, whilst the other 30 were to protest or reject actions of adults. These interactions lasted no more than a few seconds with any attempt to prolong them leading to him becoming distressed. By contrast, during a continuous 40 minute videotaped interaction session with an adult, who was using proximal communication strategies, Jo communicated 164 times - all of these communications were requests for social interaction, and were accompanied by laughter and appropriate eye-contact.

Case study 2: Tony
Tony is also five years old and has severe autism and minimal speech. He communicated spontaneously an average of 9 times per hour across the school day. Only three communications during the day were requests for social interaction. Again, during a videotaped interaction, using proximal communication techniques, he communicated 71 times in a four-minute period. All of these communications were requests for social interaction.

These case studies are not isolated examples. All the children who were observed in proximal communication settings showed significantly more intentional communication than in other situations.

Rotenberg records reportedly are seized

2008-05-22T13:21:00.002-04:00

Move along...nothing to see here, folks...JRC is above reproach...

This supposedly happened within the last couple of weeks.

Welcome Judge Rotenberg Center

2008-05-22T08:53:00.002-04:00

I plan on seeing if the JRC visits my blog, and I will post if I see it in my sitemeter information. I thank Christschool for the idea. Click on the title link if you would like to learn more.

Matthew L. Israel has a "response to blogs" here.

I have chosen specific parts to look at from my own perspective.

The skin shock procedure involves administering a two-second shock (15mA or 45mA) to the surface of the skin of, typically, an arm or leg. The shock feels like a hard pinch. It has no side effects other than a very occasional reddening or discoloration of the skin that clears up in a few minutes or at most a few days. It is administered, in the average case, only once per week. With the help of this treatment, the behaviors of many students improve to a point where they no longer need the treatment. There are no negative side effects and many positive ones as has been found in a paper that has recently been accepted for publication, written by Wietske van Oorsouw in collaboration with JRC clinicians entitled,...

Once per week...that's not what I heard... Uhm, maybe it the workers had to administer the shocks to themselves, first, before shocking the children, as Israel himself says "There are no negative side effects of the ged to consider," Since that's the case, why not go buzz-happy on the staff. I bet you would see a REMARKABLE improvement in the client's behavior....I'm jus' sayin....for things like: refusals to attend school or follow any directions of a teacher or responsible adult; fire-setting; continuous screaming in places such as libraries, movies or restaurants, disrobing and/or masturbating in
public; and destroying computers and other valuable equipment. That refusal to follow ANY directions is kind of quietly slipped in there with firesetting an masturbation. Almost, kinda, like an after thought. Nothing to see here folks,

I find it kind of funny that a harmless shock is for example, in the treatment of aggression,JRC’s treatment is effective (using the same standard of producing a 90% or greater reduction of the behavior as compared with its
frequency prior to treatment) 100% of the time,. You got to admire the tenacity of those who will voice their opinion without regard to the shock.

Mr. Israel has study upon study to back himself up. And good lawyers. The only thing he lacks is love...

Autism Diva: A better, much better way of teaching autistic kids

2008-02-17T09:33:00.001-05:00

Responsive teaching strategies promote parent interactions with their children through strategies such as "follow the child's lead" and "take one turn and wait." The results of their study appear in an article in the April 2005 issue of Developmental and Behavioral Pediatrics.

The Case Western study, at least a step above ABA, is very similar to my own "step above" in reaching Ben. Initially I was very frustrated, prayed for patience, and kept a copy of the "Love Chapter" (Love is patient, love is kind...) framed and placed on the wall where I could always look to it for guidance. In Ben's third grade, I decided to try a VERY BEHAVIORALLY BASED, but ineffective trial of immediately punishing "bad", in my mind, behavior, with the lofty goal of Ben going off Ritalin. It failed miserably, but gave me ideas....

Finally, a Ben's fifth grade teacher, Ms. Hunt ("still, small voice"), who I shall always see as a life-changing mentor TO ME, gave me tools similar to those used in the Case Western study. I entered Ben's world, and have never gone back.

I immediately saw results in my own behavior.

P.S. Thanks to the voyage blogspot for helping me find the Diva's post, which I had lost track of...

With the sometimes "do as you are told" politically expedient mentality of the NT crowd, who often end up being mentors to our children (teachers ARE social creatures...), how do we get ideas like this to replace "all things Lovaas"??

Thanks, Diva, for your timely post. You are a part of the solution, you know it?

MLK day--Recognize that he who is greatest

2008-01-21T13:32:00.000-05:00

among you, shall be your servant.

AutismSpeaks: Katie McCarron's death

2008-01-17T16:25:00.000-05:00

Some things seem so senseless...

Katie had two parents.

One saw only "autism" and felt compelled to eradicate her child of it, and death was the only answer she could see.

One saw a beautiful, loving child.

Katie, may you always be remembered in our hearts.

(If you have come here from googling Autism Speaks, please remember Katie, who was not a "tragedy" to those who loved her. Their wisdom speaks volumes.)

On suffering...and associated thoughts

2008-01-03T21:01:00.001-05:00

As parents, we will do almost anything to avoid suffering in our children. A lot of therapy, parenting, teaching, is based on developing certain capabilities in our children that will make the road they travel easier, at least in our minds. It seems so many of the decisions we make keep this elusive "road" in mind. Yet even those who seem to have all the capabilities needed for a successful life suffer, sometimes unto death.

I am at a difficult time in my life, having a difficult time making decisions for Ben. That road that I always held as a direction not to be veered from, is becoming less obvious. I'm beginning to think it isn't even a road at all.

Escaping suffering is unrealistic. Life is messy, and sad, and joyful, and hard, and easy, sometimes all at the same time.

One of the greatest teachers I ever had was an 11 year old student, in a wheelchair, tube-fed, without speech, unable to take care of herself in any way and totally dependent on others for every basic need, as she always will be. She wasn't an "angel", in the patronizing sense. She was a highly loving, smart, tolerant human being with a bit of an attitude, who gave 110% to life and kind of demanded respect. (She had ways I tell ya, ways)

Ah, hell, I don't know.

Here's something else on my mind, related to my worries about my son. I didn't have a perfect life. My father sometimes drank too much and with all the messiness that goes along with it. My mother was the church lady, but far from judgmental. We were spanked as young kids, but not a lot. But they were EVIL, and I'll tell you why. We were seldom, if ever, punished. Maybe because there were 10 of us. They could have been just too tired. Dad often said, "I think you've punished yourself enough!"

Because we were seldom, if ever punished...we developed these highly acute consciences. They didn't have the guts to do it for us, so we had to do it ourselves!! Everybody turned out honest, and hardworking, and kind.

Should I punish Ben for his failing grades (no t.v., no computer, no_______). Or should I be evil, like my parents were, eh?

It's a tough one.

Nerdfighter's Happy Dance Project

2008-01-01T09:45:00.000-05:00

Such beautiful posts on this New Years Day!! So many make me think, make me cry, make me realize how blessed we are to be who we are, living in these times.

My New Years resolution? To create the need in Ben to do the HAPPY DANCE! At the present, he is just "too cool" to make a fool out of himself as his 51 year old Ma is prone to do.

Hey, I know I am "squirrel bait"! One of my favorite jokes is to roll up the windows before the flying squirrels attack...Thus, I don't think it's a coincidence that I 'found' nerdfighters (brotherhood 2.0)before the year was up. Like a moth to a flame...Like a squirrel to squirrel-bait...

brotherhood 2.0 is the video-blog created by two competitive nerdy brothers who decided to end their habit of text communication and only communcate (there is no "i" in brotherhood) by video for one year every weekday. Through the year, somehow, they became "Nerd-fighters", and attempted to lower the world "suck" levels by asking other nerds to join them in this mission.

It's "quasi-intellectual" humor, and it amazes me two people could be so proud of their nerdiness, and create a "coming out" of nerds across the world! It feeds our inner nerds, you know, that have been neglected, rejected, and shamed into hiding.

It seems, that instead of having blood and guts inside, nerds are full of AWESOME!

"absurdity and aspergers"

2007-12-24T12:05:00.000-05:00

After reading Look Me in the Eye, I was wondering if there was a correlation between absurdity and aspergers, as
there should be.

But there wasn't if you put them in quotes...I wonder if there will be after this post.

Sorry, once again, only amusing myself....

Ruby Bridges

2007-12-22T11:41:00.000-05:00

My husband is the South Carolina state coordinator for National History Day. Many students choose to write a paper, make a board, develop a power-point, enact a drama,etc., on various topics relating to history in order to take part in a nation-wide competition.

That's how I became familiar with Ruby Bridges story. She was a child who helped lead the civil-rights era..."A little child shall lead them..." Her story is one of fantastic courage and forgiveness of the adults who would have rather seen her dead than integrating an elementary school in the 1950's.

Who will speak to this ignorant generation for those who are born with different wiring? When will we stop making school (and life) torture for them and begin to accept that we all "still see the same stars", as Donna Williams sings?

Thanks, abfh!

Echolalia...too important to forget

2007-12-09T07:50:00.001-05:00

Sometimes I come across a blogpost that I wish I had written, so on the mark it is...and I try to leave a reference to it on my blog so I can look it up again another day.

MOM-NOS describes echolalia in a way that could help every person who sees it as anything other than an exquisite way to acquire language. Her description is so simply put forward (ala Albert Einstein "Everything should be as simple as it is, but not simpler) that it shouldn't be missed.

"Shhhh...Act normal!!!"

2007-12-08T14:06:00.000-05:00

Joel, Ben, and I give each other so much shit it isn't even funny...well, maybe a little funny...

From somewhere this expression, "Shhh...act normal!" bubbled up out of his psyche. Now when we are out in public the expression comes up when we are getting a little out of hand. It's always good for a laugh! And then we calm down...

But yesterday evening we went out to eat and FORGOT TO ACT NORMAL!!! For years we have played a game in our living room which amounts to "variations on a theme" and we give points, when we remember, to the person who finds the funniest expression or visually comedic stance. There is always a seed of inspiration...be it something someone said or some absurdity of life come to light, or even like on "Whose Line Is It, Anyway?", some object that can be manipulated for comedic purposes.

Out to eat..oh, yeah...Well, anyhow there was this big metal pizza holder that each grabbed up to see who could come up with the best line.

To me, it looked like those neck braces put on one's head after an accident, to my husband, if a beer was strategically placed, a small child's potty chair, and to Ben...it looked like a backpack. He puts it over his head and neck and starts leaning backwards like the weight of it is going to throw him off and says "Dang, this backpack is heavy!", and I started laughing because I KNOW how heavy those sons-o-guns are.

The waitress was watching us, and says when her daughter was younger and getting out of the van at school, she lost her balance because of weight of the backpack and fell over backwards. She was DYING of mortification and swore to God she was never going back to school.

Now, I don't want to sound cold or unkind...but it kind of gave me the gigs. We take our tiny children and load them up with these humongously full backpacks...Ben's old girlfriend said she weighed hers in at 65 pounds...while still going on about childhood and it's carefree days, etc., etc.

Grownups are so full of it...

Autism Speaks

2007-12-08T08:54:00.000-05:00

Dear Mom and Dad

Thank you for helping me
get through school. I really appreciate
all that you did. You know
I was really scared at
the begening of elementary
school. But thanks to you
both I would not be
where I am today. Thanks
for helping me with
my homework and school
projects. I can't thank you
two for all that you
have done for me. And
I will love you always.

Love,
Ben

SON CURES SELF OF AUTISM!!!!!!!

2007-12-02T08:44:00.000-05:00

I have been hanging around the hub, perusing, knowing there is a post for me in the mix of brain I've been dealt.

"OUT OF THE CLOSET, INTO THE FRYING PAN" kept occurring, about my "coming out" at work as being autistic and prone to depression (they were not impressed)...but it just wasn't doing it for me.

Then, my mind kept perseverating on Schizophrenic "word salad" and the "idea salad" this overheated brain was going through and wondering if there was a connection...but, alas, except for this sentence, it was not to be so.

Then, I got it. Five minutes ago it occurred to me that Ben had told me this week he was no longer autistic. Right under my nose, and without my help...the little bugger had CURED HIMSELF!!!!! Honey, this is big news!!!! Perhaps I should contact Autism PFSFTAITK!!!! (Autism Parents Feel Sorry For Themselves And Ignore Their Kids)

I'm wondering if it had anything to do with:

1) My telling him that when he had a child if he had the same difficulties that I did with him, to remember the stories of how he learned differently and apply them, or call me at any time so my grandchild would not have as hard a life as he did.

2) Ben's decision to go into MECHANICAL DRAWING as his choice in his high-school track...yes, in the 8th grade he's supposed to know where he is going, already...

3)Just the feeling of self-acceptance he seems to be going through, thank GOD, right before puberty hits. In my mind, it's not that he's NOT AUTISTIC (kid, how many times do I have to tell you, you learn different...), but that he is NOT DISABLED.

4)The beautiful, if sometimes rocky relationship we've forged, where there are no "sins" of being who you are.

5)Dumb luck.

So there you go, people. Make of it what you will.

Thanks to Posautive,

2007-11-08T09:34:00.000-05:00

THE OTHER HALF...how novel...

I look to signs from the heavens. You could say the good part of Catholicism is so embedded in me...not even logic can dissuade me that coincidences are merely coincidences. I haven't been to church in years...BUT THAT'S NOT WHAT I'M TALKING ABOUT!!!

There is a silly belief that if one says a novena (don't ask) to St. Teresa, the "little flower", one will receive an answer in roses. I got a chain prayer (as us no-brains do...most of them are bullshit)about Saint Teresa from a "fundamentalist" friend. I was wondering what in the hell a fundamentalist was doing touching anything that stunk of papal (AKA, the ANTI-CHRIST!!!) catholicism...I guess the pull is too invincible...

Well, anyhow, like Bev and her 8's, I have an obsession with the number 3 for luck. (The good, the bad, and the ugly; the Father, the Son, and the Holy Ghost; Black, white, and the grey in between; ying, yang, and yahoo....sorry....)

Yes, I'm droning on...

I have tried for 5 months to get along well enough at my present job at an ABA residential "school" (INSTITUTION...schools are not like this...)

And then this damn Maurice Snell saying things in the video that blow my mind...things like,

"I could talk at that time but I didn't want to speak because I fear for others to think that I am a retarded child."

Oh, yeah...the sign from St. Teresa? The maker of the video?

rosebudk

It's just a coincidence.

It's just a coincidence that his parents found people who believed

"Individuals with autism have difficulties in socially engaging people, but that's only half the story. The other half is that people have difficulty relating to them...

Spoken by a Dr.Stephen W. Porges.

2007-10-07T10:01:00.000-04:00

Ben came up with "Carpe Dum", I came up with the 3 Stooges. Shhhh...the T-shirt is a christmas present!!!!!

Whitterer on Autism: Word play

2007-07-31T06:26:00.000-04:00

Ben also had a fear of death at that age. After a fish burial, and Grandpa D dying, he seemed to get over it. I think he thought if anyone else died, he would, too.

"-ics" and "-isms"

2007-07-29T08:31:00.000-04:00

If you google autism experts, you get 19,000 hits. If you google autistic experts, you get something like 55 hits, many of which are "autism experts" in disguise. It's all a matter of semantics.

The thing about the Hub, there are many autistic experts here. They are experts in realizing the gifts and downfalls of autism. Autism experts pretty much have the "out damn spot" mentality.

It's something about "ics".

American Heritage Stedman's Medical Dictionary - Cite This Source

-ic
suff.

1. Of, relating to, or characterized by (emphasis mine): carbonic.
2. Having a valence higher than that of a specified element in compounds or ions named with adjectives ending in -ous: ferric.
3. Of or relating to an acid: sulfuric acid.

The American Heritage® Stedman's Medical Dictionary
Copyright © 2002, 2001, 1995 by Houghton Mifflin Company. Published by Houghton Mifflin Company.

Dyslexic, Aphasic, Dysgraphic, Dyscalculalic, Ataxic, I'm going to leave now to see if there is an "-ic" for left-handedness, a way of being that is punished (-Icky???) by virtue of being different.

Here it is...

Left-handedness was often interpreted as a sign of Satanic (emphasis mine) influence, and thus prohibited. Many examples can be found in the Christian-Greek scriptures in which the wicked or evil sit at the left hand of God, while the righteous sit at the right hand of God, during the Last Judgment. The Inuit also believed that every left-handed person was a sorcerer.

Okay, now let's go into "-ism"

The first recorded usage of the suffix ism as a separate word in its own right was in 1680. By the nineteenth century it was being used by Thomas Carlyle to signify a pre-packaged ideology. It was later used in this sense by such writers as Julian Huxley and George Bernard Shaw.

Behaviorism, Nazism, Autism (a pre-packaged ideology???), Liberalism, Conservatism, ...

It occurs to me that it was not people, per se, but an "ideology", an academic basis of thought (NT's must have a plan to follow...) that began in Psychiatric circles that led to T4.

I'd rather be an "-ic" than an "-ism" follower.

Has anyone ever noticed how full of sh*t I am? I am almost embarrassed to post these "stream of conciousness" thoughts, but if I didn't, I wouldn't have much to say...

Well, anyhow, I am just thinking of how different my world is, how much less "tragic" (I'm not going there...got to stay focused...) my live with Ben is because of "ics" over "isms"

For shame...maybe I should up my medication....

Google "autistic experts"

2007-07-28T12:08:00.001-04:00

and "autism experts".

Okay, I know it's a lazy blog, but I'm jus sayin....

T4

2007-07-19T13:20:00.000-04:00

My Day Begins

Even though I lack
the strength of lions and their courage,
and am but Adam's fragile rib
graced with a mystical spirit.
I saw
a blazing fire,
incomprehensible, inextinguishable,
totally alive, Life itself.

Hildegard of Bingen

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What is the opposite of life? What is the opposite of good?

When I was a child, my curiosity was piqued by the Nazi's. Were they bad people? Were the Germans bad people? How could they be fooled, and how could I avoid being fooled in the same way? Pretty big thoughts for a third grader. It's probably why my family referred to me as the "forty-year-old midget" in an 8 year old body.

Not until we once again went to the Holocaust Museum this year, so my husband could see it, did the answer come.

For brevity's sake, I am not going to be fact based, but more opinionated than might suit some. For brevity's sake, I will only consider myself with the institutionalized, who were the canaries in the coal mine. It was with the 3000 children and 70,000 adults that the "final solution" killing machine was perfected.

In the early 1900's, an academic ideology based on Eugenics led to the legalization of sterilization for many handicapped in the United states.

Don't allow the unfit to breed...simple concept, eh?

Hitler, having a life-long fear of the handicapped, decided that not until the country was filled with the hysteria of war, would he begin a plan to rid Germany of the unfit by "mercy killing". He made this decision in 1935. Otherwise, he knew the people would not sanction it, it must be done under the cover of war and in secrecy. Of course, sterilization, which was acceptable in the U.S., began in 1934, long before the war. As always, there is the initial victim, Carrie Bell.

When the war started on September 1, 1939, the machinery to kill the handicapped was in place and... (within a month)...the killings began. Actually, the first martyr was a baby named Knaur whose father petitioned Hitler in 1938 to have his severely disabled son killed. Hitler decided to act, and instructed his escorting physician (Karl Brandt), to authorize the the euthanasia. (It only takes a spark, to get a fire going...). In October of 1939, Hitler authorized a post-dated (September 1, 1939)"authorization"(note: not "law" which would have legally sanctioned the killings and left the killers free from litigation)

It is interesting to note, Hitler chose people who shared the same ideology as he to "man" the killing machines. It began with Psychiatrists, heads of respected institutions, who sanctioned Eugenics. Next, medical doctors, who made the "medical choices" by "scientific" tests, then lawyers (who started noticing their clients falling off the face of the earth)...and police officers who manned the everyday nurses, secretaries, and common workers who normally did the actual killing under the authority of the higher ups. These were not everyday people, THEY WERE SPECIAL PEOPLE, who rid their consciences of blame because somebody in authority told them it was okay! (Forgive gallows humor, it's how the Jews deal with it, so I am in good company. Also, get used to "quotes", and recognize them for what they are: euphemisms.)

So there you have it. The killers were not everyday people, they were SPECIAL!! They were CHOSEN losers who couldn't make it to the top without help, without licking the hand of the Fuhrer! They were now IMPORTANT and tied to a powerful leader!

Of course, the parents and doctors who lived with the children were at the bottom of it...troublemakers one and all...and very few were like Mr. Knaur who wanted his child dead. Therefore, they had to be lied to.

Institutions were forced by law to "register" appropriate cases involving hereditary deformations (harelips, for God's sake), and mental retardation for "clarification of scientific questions." (italics mine) The Reich sent out a decree that explained to them the reason why these listed children were being moved to different hospitals was that the state hospitals were really OPEN WARDS FOR THE EXPERT CARE OF CHILDREN AND YOUTH" ! (capitalization mine)and that refusal to commit the child, once all the facts had been explained, might lead to the Reich to have to investigate whether such a refusal is a transgression to the right to custody. That usually shut them up. And if they wanted to take their children out of the hospital, they were sent to contractual labor, whereby the parent would have little choice but to commit the child.

The neatest thing the Nazi's did? The parents were not allowed to visit the children in the hospitals because the children, of course, would need to adapt to their new surroundings. Even though the children died within days of arriving at the OPEN WARDS FOR THE EXPERT CARE OF CHILDREN AND YOUTH" ! (capitalization mine), they waited a couple of weeks before sending a note home that announcing the loved one had died of some tragic disease. Junior medical experts scrutinized the dead bodies for some believable affliction and lied on all of the death reports. They had to. I have taken the liberty of violating copyright rules, because I can't do justice to the author, Henry Friedlander's words...

The Origins of Nazi Genocide

2007-07-19T07:50:00.001-04:00

When we went to Washington, I became very interested in the idea of sterilization and later "mercy killing" of handicapped children, where it all begin. The kids were "practice" for what was to happen later on. CANARIES IN THE COAL MINE?? To tell the truth, it was the first stopping point, where one could sit down in the Holocaust museum. The first time I went, I was drawn to understand it. The second time I went, I realized it was the beginning of the final solution.It had a name: the T4 Operation. I asked the clerk in the book store for a book about the T4 Operation, and the above was the one he gave me. Most books spoke only about the later days, this one served as a guide to where it all began. Strangely enough, it was the study of Eugenics in the United States that served as a scholarly excuse. We, however, did not enact any solutions, as an elite crew of medical personnel in Germany did. I will write a book report, if NO ONE has any objections to it. If it is too painful, I will not. But remember, sunshine is a great disinfectant, and the truth will set you free!!!

I always wondered why the German People let Hitler get away with it. The truth is, Hitler based the whole thing on lies and deception. And used the Psychology heads of Major Universities to do it, and carefully selected the "killers".

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To amuse myself, I often google "images" of autism, just to see what's out there. Today, I happened to notice one of the "code words" of the Nazi's. (This message was below the first picture, although it did not download.)

Autism Spectrum Disorders

Autism Spectrum Disorders (ASDs) may arise from a combination of genetic and epigenetic (environmental) events that result in specific neurodevelopmental problems. These events or “hits” may occur in the genome and thus can be inheritable. The number of “hits” before a threshold or ASD is reached is today unknown. These hits are postulated to occur before (hereditary) and after conception (in utero), as well as in the early postnatal years.

Once manifested, the “hits” produce various behavioral, communication and social deficits that become apparent in the early postnatal stages of life until the child becomes diagnosed beginning at about 36 months.

The incidence of ASDs are rising, and latest estimates are as high as 1/72. Following diagnosis, the parent and caretakers are faced with numerous options for therapeutic intervention. Intervention is a critical issue, since in general the earlier the intervention, the better the prognosis.

A major goal of TIPOgen is committed to identify early markers of ASDs that may be used to diagnose ASDs and prognose the effects of therapeutic interventions, thus reducing the time from “hit” and intervention.

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See those words, therapeutic intervention? We all know what that means. If allowed, I will work on a book report this weekend.

The book was not all horrific, there was a seed of how we manage to avoid another final solution. You may or may not be surprised at the authors summation of how to avoid it. I'll give you a hint: It is happening right here on this hub....

If this has been done before, please give me the links to your own posts in the comments. Although it seems extreme, these are the times we live in, and we all know it is beginning again.