SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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October 17, 2002 Promote Your Event - Free! - Send a

CALENDAR LISTING:

RESEARCH

* Scent of Trouble Surrounds Cosmetics

* The Psychopathology of Non-Male Parents of Autistic &

Mentally Retarded Kids

* Immune Reactivity to Dietary Protein Linked with GI Inflammation

in ASD Kids

* Gene Mutation Linking Autism, Epilepsy, M. Retard &

Dystonic Hand Movements

* Repligen Announces Positive Secretin Safety Data from

Phase 2 Clinical Trial

* Brain on a Chip

TREATMENT

* Latest Child Neurology Practices and Studies Presented at Daylong Briefing

PUBLIC HEALTH

* MMR: More Brain Measle Virus Found

AWARENESS

* The School Photo: Capturing Autism

COMMENTARY

* Michael’s Due Process

RESEARCH

Scent of Trouble Surrounds Cosmetics

Women shun products with chemical linked to birth defects

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Devon Moser loves perfume. She has worn it every day of her life since she was a child. Although "Green Tea" is her hands-down favorite, other cherished scents fill more than half of her medicine cabinet. But since this summer, she has worn hardly a drop.

Moser, 26, thinks her perfume may have something to do with the difficulty her 5-year-old daughter has in talking. And with her erratic spinning around the room. And with all the other symptoms that doctors suspect might indicate autism. But, then again, she wonders if her daughter's problems might be linked to nail polish, which Moser now uses only sparingly. Or her hand lotion. Or her other makeup, all of which is gathering dust on her bathroom shelf.

"I have cut down almost completely on makeup, much as I hate to say it, because I have a lot of imperfections on my face," said Moser, a lawyer who lives in Ohio and is the mother of two children. "But I am afraid it's going to do something to me or the kids."

Moser's fear can be summed up in a single word that most people have never heard of: phthalates. Phthalates (pronounced without the "ph") are a family of chemicals used as softeners in a host of items from toys to medical supplies, as well as in many personal-care products, including cosmetics and shampoo. Simmering questions about their safety, which have hovered over the scientific and regulatory communities for years, have been inflamed by a report released this past summer, which found the chemicals present in a majority of cosmetics tested by an independent laboratory in Chicago. The results, published in part in a riveting full-page ad in The New York Times in July featuring a pregnant woman and a bottle of perfume, commanded widespread attention. (The full report is available online at

"We have been overwhelmed with calls," said Charlotte Brody, executive director of Health Care Without Harm, one of three environmental groups that sponsored the study, called "Not Too Pretty," along with Coming Clean and The Environmental Working Group. "Some people were cleaning out their medicine cabinets and wondering if the bottles were safe to recycle. Others wanted affirmation of a diagnosis, who said, `I worked in a hair salon 25 years ago, and my son is having a hard time making a baby. Do you think this could be a cause?' The honest answer is, I don't know."

Neither does anyone else. In fact, it is hard for the average consumer to find out if the chemical is even in a product. Of the 52 highly popular brand-name products found to contain phthalates out of a total of 72 items tested in the study, only one listed a phthalate on the label. Although the US Food and Drug Administration requires ingredients to be listed on cosmetic labels, one loophole in the law allows fragrances to go unlisted. Because most personal-care products contain some degree of fragrance, they often contain phthalates but rarely mention them on their labels.

Asked why fragrances are exempt, Dr. Linda Katz, director of the FDA's Office of Cosmetics and Colors, said, "I don't know." Asked what levels of phthalates are present in cosmetics, another FDA spokesman said the agency does not know because it has not tested any of the products. The FDA would only test a cosmetic if it received complaints about it. And they never have. Until now.

Phthalates are everywhere. They are in shower curtains, wallpaper, vinyl flooring, raincoats, detergents, and hundreds of other household items. In cosmetics, they serve largely as plasticizers that keep nail polish from cracking and hair spray from becoming too stiff.

Some studies, which have been done only on animals, have shown they may damage several organs, in particular the developing male-reproductive system. Some disorders - like hypospadia, a deformity of the penis, and undescended testicles - have become increasingly common nationwide and some researchers wonder if there may be an environmental cause.

Manufacturers have long dismissed alarm over phthalates, saying they have been used for decades with no reliable evidence of ill effects. The American Chemistry Council's Web site, in fact, says that the "Not Too Pretty" report revealed that phthalates were used in such small amounts in cosmetics, that, "Rather than scaring women, this report should reassure women that they can continue to confidently use beauty products containing phthalates."

Nonetheless, the FDA has called for a review of the principal phthalates used in cosmetics - known by the chemical names of dibutylphthalate, diethylphthalate, and dimethylphthalate - which have not been assessed for 17 years. Although officials took note of the recent report, the agency has been moved more by the work of the Centers for Disease Control, which has found the widespread presence of phthalates in humans. A 2001 study found the chemical present in virtually every one evaluated, while an earlier report found the level of dibutylphthalate, which is used in nail polish, in women ages 20 to 40 to be nearly 50 percent higher than the rest of the group. The CDC is conducting a larger study in an effort to track down the source of those phthalates, but spokesmen for the agency, as well as the FDA's Katz, say that, in the meantime, they don't feel women should worry about using their cosmetics.

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© Copyright 2002 Globe Newspaper Company.

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The Psychopathology of Non-Male Parents of Autistic & Mentally Retarded Kids 'Comparison of Psychopathology in the Mothers of Autistic and Mentally Retarded Children.' [Actual title. See commentary following abstract.]

ds=12378023&dopt=Abstract <- - address ends here.

Firat S, Diler RS, Avci A, Gulsah G.

Child and Adolescent Psychiatry, Cukurova University Faculty of Medicine, Balcall, Adana, Turkey. dilerrs@yahoo.com

The aim of this study was to evaluate anxiety, depression, alexithymia, and general psychological symptoms in the mothers of autistic children in comparison with those in the mothers of mentally retarded children.

Forty mothers of autistic children and 38 mothers of mentally retarded children were included in the study.

After a clinical interview, psychometric tests were performed for depression, anxiety, alexithymia, and Symptom Distress Check List (SCL-90) for general psychological symptoms.

Non-depression rates was 27.5% in the mothers of autistic children whereas the rate was 55.3% in the mothers of mentally retarded children.

There was no difference regarding anxiety and alexithymia between the two groups.

The psychopathology in the mothers of autistic children was more frequent than in those of mentally retarded children in all sub-scales of SCL-90 (somatization obsessive-compulsive, interpersonal sensitivity, depression, anxiety, anger-hostility, phobic anxiety, paranoid thought, psychotism, and extra scale).

The mothers of autistic children experienced more psychological distress than those of mentally retarded children.

Our findings indicates that the assessment of autistic and mentally retarded children should include psychological assessment of their mothers.

PMID: 12378023 [PubMed - as supplied by publisher]

[Brief Commentary (read slightly tongue-in-cheek): The mothers-only focus of this research would typically generate a barage of protest letters from slighted American dads. The fathers of autistic kids might complain that this is just so-much reinforcement of the ongoing objectification and stereotyping of men as little more than walking sperm banks and indentured child-support ATMs, when it comes to having a family role.

The authors are talking Turkey here, literally. Cukurova University, where this research originates, is located in the middle-east country of Turkey. And while Turkey is geographically adjacent to the Greek Isle of Lesbos, it is more aligned culturally to the patriarchal yearnings of neighboring countries like Afghanistan and Saudi Arabia. So while some may be disappointed by the exclusion based on gender, we should not be surprized.

But in all seriousness, if addressing and reducing psychological stress in FAMILIES with autism is an implied intent of the researchers, then they should try not leaving fathers out of the picture, especially for those of us without harems who are the primary parental caregivers to our hildren. –Lenny Schafer, Izak's dad, publisher SAR.]

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Immune Reactivity to Dietary Protein Linked with GI Inflammation in ASD Kids 'Innate Immunity Associated with Inflammatory Responses and Cytokine Production against Common Dietary Proteins in Patients with Autism Spectrum Disorder.'

ds=12378124&dopt=Abstract <- - address ends here.

Jyonouchi H, Sun S, Itokazu N.

Department of Pediatrics, University of Minnesota, Minneapolis, Minn., USA.

Objectives: Children with autism spectrum disorder (ASD) frequently reveal various gastrointestinal (GI) symptoms that may resolve with an elimination diet along with apparent improvement of some of the behavioral symptoms.

Evidence suggests that ASD may be accompanied by aberrant

(inflammatory) innate immune responses.

This may predispose ASD children to sensitization to common dietary proteins (DP), leading to GI inflammation and aggravation of some behavioral symptoms.

Methods: We measured IFN-gamma, IL-5, and TNF-alpha production against representative DPs [gliadin, cow's milk protein (CMP), and soy] by peripheral blood mononuclear cells (PBMCs) from ASD and control children [those with DP intolerance (DPI), ASD siblings, and healthy unrelated children].

We evaluated the results in association with proinflammatory and counter-regulatory cytokine production with endotoxin (LPS), a microbial product of intestinal flora and a surrogate stimulant for innate immune responses.

Results: ASD PBMCs produced elevated IFN-gamma and TNF-alpha, but not IL-5 with common DPs at high frequency as observed in DPI PBMCs.

ASD PBMCs revealed increased proinflammatory cytokine responses with LPS at high frequency with positive correlation between proinflammatory cytokine production with LPS and IFN-gamma and TNF-alpha production against DPs.

Such correlation was less evident in DPI PBMCs.

Conclusion: Immune reactivity to DPs may be associated with apparent DPI and GI inflammation in ASD children that may be partly associated with aberrant innate immune response against endotoxin, a product of the gut bacteria.

Copyright 2002 S. Karger AG, Basel

PMID: 12378124 [PubMed - as supplied by publisher]

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Gene Mutation Linking Autism, Epilepsy, M. Retard & Dystonic Hand Movements 'Variable expression of mental retardation, autism, seizures, and dystonic hand movements in two families with an identical ARX gene mutation.'

ds=12376946&dopt=Abstract <- - address ends here.

Turner G, Partington M, Kerr B, Mangelsdorf M, Gecz J.

Hunter Genetics and the University of Newcastle, Waratah, NSW, Australia.

Two families, originally diagnosed as having nonsyndromic X-linked mental retardation (NSXLMR), were reviewed when it was shown that they had a 24-bp duplication (428-45 1dup(24bp)) in the ARX gene [Stromme et al., 2002: Nat Genet 30:441-445].

This same duplication had also been found in three other families: one with X-linked infantile spasms and hypsarrhythmia (X-linked West syndrome, MIM 308350) and two with XLMR and dystonic movements of the hands (Partington syndrome, MIM 309510).

On review, manifestations of both West and Partington syndromes were found in some individuals from both families.

In addition, it was found that one individual had autism and two had autistic behavior, one of whom had epilepsy.

The degree of mental retardation ranged from mild to severe.

A GCG trinucleotide expansion (GCG)10+7 and a deletion of 1,517 bp in the ARX gene have also been found in association with the West syndrome, and a missense mutation (1058C>T) in a family with a newly recognized form of myoclonic epilepsy, severe mental retardation, and spastic paraplegia [Scheffer et al., 2002: Neurology, in press].

Evidently all these disorders are expressions of mutations in the same gene.

It remains to be seen what proportions of patients with infantile spasms, focal dystonia, autism, epilepsy, and nonsyndromic mental retardation are accounted for by mutations in the ARX gene.

Copyright 2002 Wiley-Liss, Inc.

PMID: 12376946 [PubMed - in process]

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Team Claims Leap Forward Against Celiac Disease

London (Reuters Health) - Scientists said on Wednesday they may be able to develop a potential vaccine for celiac disease, the common, debilitating complaint that forces sufferers to eat only gluten-free foods.

A team at Oxford University said they had identified the protein components in cereal crops responsible for the disorder, which affects around one in every hundred people.

Principal investigator Dr. Robert Anderson, a gastroenterologist now based at the Royal Melbourne Hospital in Australia, said the finding dramatically increased the possibility of developing a therapeutic vaccine.

Anderson, who will give details of the discovery at the Australian Gastroenterology Week conference in Adelaide on Thursday, said in a statement that Australian researchers would soon begin work on designing and testing the potential vaccine.

He said the research confirmed that almost all people with celiac disease react to a common set of protein sequences in gliadin, part of the gluten protein in wheat, rye and barley.

"This opens the way for a specific diagnostic test for the disease as well as new prevention and treatment strategies, and even the possibilities of producing wheat that does not contain the rogue sequence," said BTG, the London-based technology transfer company that has bought the rights to the discovery.

More than 90% of people diagnosed with celiac disease have a gene known as HLA-DQ2, which facilitates the initiation of an immune response to gliadin.

But environmental factors also play a role in the expression of the disease and it is this aspect of the disease that researchers believe can be modified.

Anderson said future research is still needed to prove that a peptide could be used to desensitize or induce tolerance in people with celiac disease.

At present, the only approved treatment for celiac disease is lifelong avoidance of gluten in the diet. This can be difficult and costly for sufferers, who may also be at risk of cross contamination during food processing.

The epitopes, or antibody receptor sites, on gliadin that are recognized by gluten-specific immune system T-cells were isolated by inventors based at the University of Oxford.

The inventors have shown that by modifying the bioactive epitope to produce a number of similar structures, these modified versions will compete with the T-cell recognition site and inhibit the immune response when given with the unmodified, bioactive epitope.

These modified peptides could therefore form the basis of a specific therapeutic treatment for celiac disease.

Copyright 2002 Reuters News Service.

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PRNewswire-FirstCall via COMTEX - Repligen Corporation announced today results from an open label "Extension Study" of its Phase 2 clinical trial of RG1068, human synthetic secretin, in children with autism to collect additional longer-term safety data. No serious adverse events were reported in any patient and the Extension Study confirmed that RG1068 is well tolerated in these patients.

In the extension phase of the study, all 124 patients who completed the Phase 2 trial were offered six doses of RG1068 over an 18-week period.

The study enrolled 98 subjects and 86 completed all 11 dosing and evaluation visits. Safety was assessed by three criteria: adverse events, blood chemistry/hematology and antibody responses to RG1068. There were no serious adverse events for any patient. As in the Phase 2 study, only transient flushing and tachycardia occurred more frequently in the Extension Study than in the placebo group during the Phase 2 study.

Other adverse events including infections, hyperactivity, aggressiveness, fever, gastrointestinal symptoms and sleep disruption were not statistically different during the Extension Study when compared to either the RG1068 or placebo groups in the first study. There was also no evidence of changes in blood chemistries or hematologic parameters over the 18 week course of the Extension Study.

No patient has shown an antibody response to RG1068, including the 37 patients from the Phase 2 RG1068 group who have now received a total of nine doses and the 49 patients from the Phase 2 placebo group who have now received a total of six doses of RG1068.

"We are pleased with the excellent safety profile of RG1068 observed in the Phase 2 and the Extension Study," stated Walter C. Herlihy, President and CEO of Repligen. "We now have experience with over 700 dose administrations of RG1068 without a serious adverse event. These data indicate that RG1068 is well-tolerated in this patient population."

The Phase 2 trial enrolled 129 children, 3 to 6 years of age, with moderate to severe symptoms of autism and reported gastrointestinal symptoms. There were 66 patients in the RG1068 group who received three administrations of RG1068 or a total of 198 doses.

There were no serious adverse events in either the RG1068 or placebo-treated groups and no difference in the number of behavioral adverse behaviors including hyperactivity, sleep disruption, increased irritability or aggressiveness between the two groups.

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Brain on a Chip

Zombie brains could soon become a powerful tool for drug developers. A biotech company has developed a way to keep slices of living brain tissue alive for weeks, allowing researchers to study the effect of chemicals on entire neural networks, not just individual cells. "We are building stripped-down mini-brains, if you will, directly on a chip," says Miro Pastrnak, business development director of Tensor Biosciences of Irvine, California. He says the "brain-on-a-chip" could help drugs developers find better treatments for a host of neurological and psychiatric disorders, from Alzheimer's disease to schizophrenia. Tensor may already have found a more effective treatment for anxiety this way.

"Behaviour is the result of the electrical activity of billions of brain cells connected in complex circuits, not the activity of a cell or a receptor acting in isolation," says Pastrnak. And psychoactive drugs alter behaviour at this level, often affecting many different types of neural receptors, cell types and synapses. Yet at the moment, candidate drugs are only tested on individual nerve cells, because it's proved difficult to keep larger pieces of brain tissue alive for more than a few hours.

The mini-brain, however, survives for weeks at a time. "We can even co-culture tissues from different parts of the brain on the same chip to examine the communication between them," says Pastrnak.

It consists of a glass chip containing tens of thousands of interconnected living brain cells, taken from rats or mice and suspended in a solution of artificial cerebral fluid. An array of 64 electrodes on the chip's surface monitors the overall electrical activity of the brain tissue, just like an electroencephalogram (EEG), to show the effect that drugs have on the tissue.

Tensor's electrodes maintain continuous contact with the cells but do not damage them. This is vital when repeating experiments, because you have to be sure you are always getting readings from the same groups of neurons.

Neurophysicist Peter Fromherz of the Max Planck Institute for Biochemistry in Martinsried, Germany, who has developed techniques to grow neurons on silicon, says the chips would be even more useful if they could record the activity of individual neurons. "The problem is that these electrodes are widely spaced, so you get little information about the neural circuits," he says.

But the 64 electrodes are enough to get useful EEG readings even if you can't tap into the electrical activity of single neurons, Fromherz says. And Tensor has also developed a way to produce the natural EEG rhythms, or brainwaves, in its chip. The rhythms continue even after the chemical that induces them has been washed off. Fromherz thinks that the chip will indeed provide a powerful new tool for testing the effect of drugs.

At next week's Chips to Hits conference in Philadelphia, Tensor Biosciences will announce that it has already used its chip to find a potential drug for anxiety that it believes will be more specific, less toxic and have fewer side effects than existing drugs.

New Scientist issue: 19th October 2002

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TREATMENT

Latest Child Neurology Practices and Studies Presented at Daylong Briefing Science and health care media briefing set for San Francisco on October 24

Seven leading U.S. child neurologists are gathering in San Francisco, Thurs., Oct. 24, to share the latest research and new physician guidelines pertaining to neurological disorders affecting children. Topics will include mental retardation, febrile seizures, autism, epilepsy, brain injury, and cerebral palsy.

Speakers at Child Neurology: Discoveries and Practice, a briefing for science and medical writers, include Steven Ashwal, MD, Department of Pediatrics, Loma Linda (CA) University School of Medicine, and president of the Child Neurology Society, who will address global developmental delay (mental retardation) and present a new practice guideline for evaluating these children.

Deborah Hirtz, MD, program director of Clinical Trails and Studies with the National Institute of Neurological Disorders and Stroke, Bethesda, MD, will give an overview of some of the more common childhood neurological disorders, such as epilepsy, autism and cerebral palsy. She'll review another new AAN and Child Neurology Society practice guideline on treating a child with a first unprovoked seizure.

Other speakers include Donna Ferriero, MD, University of California, San Francisco (brain injury); Douglas Nordli, MD, Children's Epilepsy Center, Children's Memorial Hospital, Chicago (epilepsy); Pauline Filipek, MD, University of California Irvine Medical Center, Orange, CA (autism); Pat Barnes, MD, Department of Pediatric Neuroradiology, Stanford University Medical Center (neuroimaging of the neonate); and William Mobley, MD, Department of Neurology and Neurological Sciences, Stanford University Medical Center, will moderate and summarize the day's presentation highlights.

The event (9:45 to 4 p.m.) is sponsored by the American Academy of Neurology, The AAN Education and Research Foundation, the Child Neurology Society and The Child Neurology Foundation. It will be held at the Crowne Plaza, Union Square, San Francisco

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PUBLIC HEALTH

MMR: More Brain Measle Virus Found

Last week it was reported that a 13 year old boy who became severely epileptic after his MMR jab has been found to have measles virus "consistent with the vaccine strain" lodged at the site of his brain damage. He is not the only one.

Another boy, it emerges, died two years ago aged 15 after worsening epilepsy and a deterioration in his health. A recent brain biopsy has also shown the presence of such measles virus in his brain.

His family, which wants to remain anonymous, is one of only a handful to have won a payment from the government's vaccine damage unit over the MMR jab. The boy was a healthy, bright four and half year old and about to start school when he received his triple jab. Within hours he suffered a fever fit and swiftly deteriorated. At one stage he was having 200 seizures a day.

Ironically, it was accepted that he had been damaged by the jab because of the now banned urabe strain mumps component. (The original MMR jab was withdrawn because the mumps ingredient was found to cause potentially fatel mumps meningitis). And it is only in recent weeks that examination of his brain tissue has found the more likely culprit to be the pesistent measles virus that is "consistent" with the vaccine strain. Like the 13 year old whose plight was revealed last week, he to had had no known exposure to natural measles.

The examination of tissue on the 13 year old only took place because his epilepsy was so severe that surgery to remove the area believed to be sparking the seizures was recommended. Like the hundreds of autistic children, whose families also blame MMR, the boy also had digestive problems and bowel biopsies have also found measles virus consistent with the vaccine.

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AWARENESS

The School Photo: Capturing Autism

It's hard to take photographs of autistic children. How they might appear never seems to cross their minds

Jake's in the newspaper this week. The local paper publishes pictures of the reception classes of the village schools: Jake is cross-legged in the front row, smiling the rather squinty smile he reserves for momentous occasions. He pores over the photograph: "That's David - he's silly at lunch. That's Paul - he's my friend. Danny - he's funny! Lucy - she's got orange hair. Annie - she's the same as Lucy, except her hair's different."

My oldest son, George, also started off at a village primary. I remember a similar photograph from those days. The children stood in the playground forming a perfect grinning triangle - except for a grey blur in the top corner. That was George, escaping. Unintentionally, the photographer had neatly encapsulated autism.

Sam, my second son, is also autistic. His class photo is marvellously expressive of the autistic child's indifference to the whole business. He attends an autistic unit - eight boys, no girls; but there are only seven in the photo because one was having a screaming fit at the time. Tim is barefoot, Alex wears only socks, Martin's trainers are flapping open. Sam and Craig are being held in place by members of staff. No one is looking at the camera.

George and Sam are handsome boys, but it's hard to take a good picture of them. Their eyes are closed or averted, or they're simply on the move. George dislikes photos of himself - if I display framed pictures round the house, he turns them face down. He rejected all images of himself as a baby or toddler - "That's not me! It's Sam." He can't bear talk of the past, or the future - "I'm not going to be a big boy one day." It is as if his sense of self is too fragile to countenance the possibility of change.

Jake, by contrast, is consoled by photographs. When he wept because, as he said, "I want to make time go backwards. I wish I could see our trampoline when it was new," I got out the album, and he was cheered by the sight of his father struggling with the new trampoline while four-month-old Jake looked on from his bouncy chair. Sam had a look too, and was pleased to spot familiar objects - his soft owl, his dummy - but showed little interest in the people. George just said, "Put the pictures away."

Last week, I went to an exhibition of photographs taken at the TreeHouse school. TreeHouse was set up by parents in 1998; it's the first UK school to teach autistic children according to the ABA method (applied behaviour analysis). The photographer, Stefanie Hafner, spent a lot of time getting to know children and staff - the ratio is one-to-one. These are not simply portrait studies of often very attractive children. Like the ABA approach, which breaks learning down into tiny chunks, Hafner has photographed details in close-up - a hand, an ear, the back of a head. The images get close to the way an autistic child experiences the world: lacking "central coherence", the autist characteristically sees the minutiae, not the bigger picture.

Hafner's approach also reflects the patient observation that we "neurotypical" parents need to use if we hope to understand our children's behaviour. Autists very rarely explain or describe the way they see the world, which is why autobiographical accounts are particularly valuable. A symptom of the condition is an absence of "theory of mind", an inability to see things from another's point of view. When George was little, he used to say "Want it", without realising that I didn't know what "it" was. "Want it!" he would shout, with increasing emphasis and frustration, when I asked for clarification.

So we have to study our children like anthropologists. Concrete fact often means more to autists than words, and the TreeHouse photographs have a strong physicality. A little boy stretches out on a ledge, looking as if he'd like to be a wooden slat himself as he presses his body into the space, which is, satisfyingly, just the right width, and loses himself in the feel and smell of the wood.

We can only guess what this child is experiencing. But we can be sure that he's not giving a moment's thought to how he might appear to the photographer. That's autism.

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COMMENTARY

Michael’s Due Process

By Vicki Takata

I walk into my kitchen at 5AM reaching for the coffee pot amongst the countertop clutter of Michael’s prescription medications and supplements. My dining table has neatly arranged piles of his work samples, home / school communication and medical files. The living room desk has the latest release on self-advocacy bookmarked with the business cards of children’s advocates. Next to these things are the photographs of my 9 year old son’s bruised arms taken by law enforcement officers late one evening last month. Internet copies of The Oregon Administrative Rules and Individuals with Disabilities Education Act excerpts, stacked neatly beneath, detail codes that govern behavior management and the use of restraints.

Ours is a school community which supports each other. We debate and validate each other’s concerns on our driveways, at potlucks and BBQs while our kids spray each other with hoses or hunt for Easter eggs. We pull together by providing and accepting delicious hot meals or inspirational cards when trauma strikes. Yesterday, when I saw the yellow minibus head up the street I followed it to my new neighbor’s home. Sitting on the curb with mom, younger baby in her arms, we had a good cry together. I remember the pain- some days I succeeded in choking it back making polite chit-chat with the bus driver, while other days I escaped inside my home sobbing.

We trust our educational system enough to strap our precious 3 and 4 year old babies in their booster seats on the mini school bus. Send them miles away from home with strangers to receive attention and expertise for their special needs. We’re aiming for the best but given what’s “appropriate”. Expensive in-home therapists tutor our kids trying to capture their interests enough to teach them skills that their neighborhood playmates absorb in classroom circle times.

We endure and negotiate through long, unempowering afterschool meetings with tired, overworked educational professionals feeling guilty for stealing what little precious time they have left for their own families. But advocacy for our kids neither begins nor ends at the cluster of desks in Michael’s school Learning Center. There are religious ed classes, recreational programs, the dentist’s office and emergency rooms.

Maybe some of the professionals from Michael’s school will happen to glance over this while spending time at home in their own communities. Enduring our struggle has helped us recognize you all as families first with responsibilities to your own. We are privileged to you have us join our community but want you to remember what a privilege you have in teaching our kids.

Michael’s Due Process occurs daily as he walks up the school’s curb with some of the neighborhood gang. Perhaps he won’t be singled out as the kid whose parents are the walking lawsuit but rather as the courageous, yet misunderstood child with stamina beyond words, only seeking “appropriate” treatment at school.

-Vicki Takata vtakata@pacifier.com

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Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie

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