May 30, 2005

Memorial: C. Chandler Perine

Marine Corps 1st Lt. C. Chandler Perine was my uncle and he loved me.

He died in the service of his country on November 15, 1970 at the age of 26 when the plane he was piloting suffered mechanical failure during take off from McGuire AFB, New Jersey

Chan, my father's younger brother, served as a helicopter pilot in Vietnam, a football player in college and "class flirt" in high school.

My youngest son, Chandler Perine Taylor, is named in his honor.

May 25, 2005

Ideas on Autism Diagnosis

Autism Inflation
Jerome Kagan and Robert Pozen, 06.06.05

Doctors should use biology, not only behavior, to evaluate children.
The bad news is that the reported incidence of autism has tripled over the last decade. The good news is that this figure is probably exaggerated.

Autism's sharp rise is, in large part, a matter of definitions. Is a child with severe learning problems autistic? What about a child who is insensitive in social situations? What about children who have trouble communicating or seem to retreat into their own shells? These days a large number of children who fit any of those descriptions are likely to be tagged with the autism label, or their parents will be told that they have a disorder (like Asperger's syndrome) that falls somewhere in the autism spectrum.

This looseness of definition is getting in the way of medical progress. We will not find effective cures for autism until we add biological markers to behavioral symptoms in diagnosing children.

Three different types of biological features can help to distinguish among the children currently labeled as autistic by behavioral symptoms.

A larger brain, as revealed in MRI scans, is one sign. The larger brains of some autistic children could be due to an excess of myelin, the sheath of white matter around the nerve cells. This could mean that the neurons are overly active, since neuron activity stimulates the production of myelin. Other autistic children have abnormally small neurons in the prefrontal and temporal cortex. These parts of the brain play a major role in language development and behavioral control--key challenges for many autistic children.

A second set of biological markers involves the responses of neurons to external stimuli as measured by the timing and magnitude of brain waves. Some autistics do not show the expected wave form when they hear a change in a spoken syllable (e.g., from "pa" to "ba"). This suggests that there is something deficient in language perception.

The biochemistry of the brain supplies a third differentiating feature. A set of the relevant molecules can be measured by examining the cerebrospinal fluid, which bathes the spinal cord and extends upward to the brain. Some autistic children show abnormally high concentrations of molecules called gangliosides. Other biochemical features, which can be measured by brain-scanning techniques, show that certain autistic children have abnormally high amounts of serotonin, a critical molecule for regulating mood.

If children with autistic behaviors were evaluated for these biological features, physicians would likely find several distinct profiles among the children, despite the similarities of their behavior. In other words, what we call autism today is likely to constitute two, three or even more quite different disorders.

The currently preferred treatment for children exhibiting early signs of autism is enrollment in intensive behavioral programs. These programs involve one-on-one interactions between the child and the therapist from 20 to 40 hours per week. Scientific studies of the most popular of these programs have shown modest results. Although intensive behavioral therapy can reduce the frequency of certain autistic behaviors for certain children, it does not cure the basic language and emotional deficiencies of most autistic children.

To find new cures, we need more research into the biological bases of the various types of autism. Over the last few years the National Institutes of Health has greatly increased funding for such research, but it must continue to coordinate the studies at various laboratories to ensure systematic conclusions on these biological markers. Once these conclusions are established, we'll be well on our way to prescribing new therapies that target each child's particular biological disorder, rather than general therapies aimed at all children labeled as autistic.

Perhaps in a few decades, when a young child begins to exhibit autistic symptoms, a physician will order blood tests and brain scans. These will lead to a targeted set of therapies that will be far better than the uniform response we offer today. Autism Inflation

Jerome Kagan, professor of psychology at Harvard, and Robert Pozen, chairman, MFS Investment Management.

May 20, 2005

Enviromental Hg in the Unvaccinated Autistic Amish

The Age of Autism: Mercury and the Amish

By Dan Olmsted

Washington, DC, May. 20 (UPI) -- The cases of autism among the Amish that I've identified over the past several weeks appear to have at least one link -- a link made of mercury.

That's not something I expected to encounter. I had been looking for an unvaccinated population to test the controversial idea that vaccines, and in particular the mercury-based preservative called thimerosal, could be behind the apparent rise in autism cases over the past decade.

The concept: If the Amish have little or no autism, it might point a finger at something to which they have not been exposed.

Most of the medical establishment, it must be stated upfront, considers the idea that thimerosal could have played a role in the rise of autism disproven and dangerous. As noted in the last column, however, the director of the Centers for Disease Control and Prevention says she has "an open mind" about that possibility.

So do I, having come across correlations that made me want to look more closely at thimerosal. For instance, the first child diagnosed with autism in the United States was born in 1931, the same year thimerosal was first used in a vaccine. And autism diagnoses exploded in the 1990s, the same decade children got an increasing number of thimerosal-containing vaccines (it was phased out starting in 1999). Tantalizing, but proof of nothing.

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn't expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule. When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

To cut to the chase, what I've found to date is very little evidence of autism among the Amish in Lancaster County, far below the 1 in 166 rate of Autism Spectrum Disorders the CDC cites for children born in the United States today. I don't discount the idea that they might be more difficult to find or diagnose, and I'm still looking.

I did find three or possibly four children with autism and, weirdly, a possible link to vaccinations. One was a child adopted from China, where she got all her vaccinations before being vaccinated all over again when she got to the states. Her Amish-Mennonite mother said she believes that vaccine load caused her autism. The mother told me about another child who had what she described as an immediate vaccine reaction that left her autistic at age 15 months.

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

The pattern I was noticing then took an interesting twist. From a doctor's posting on an alternative health Web site, I learned about several cases of autism among Amish children who had not, in fact, been vaccinated.

I called that doctor, Lawrence Leichtman, at his office in Virginia Beach, Va. A pediatrician and geneticist who has been widely published in medical journals, he told me he was treating six unvaccinated Amish children and adolescents -- three from Pennsylvania, including one from Lancaster County; two from Ohio, and one from Texas.

That seemed to render any relationship between autism and mercury exposure in the Amish less likely. But, not after what Leichtman said next.

"By the way," he volunteered, "four of these six kids all have elevated mercury. The only two that don't, one of them is from Texas and one is from Iowa. But all of the people in Pennsylvania and one of the people in Iowa have elevated mercury."

Given what I had already come across in Lancaster County, I wanted to hear more about that. Were the mercury levels significantly higher? I asked. "Oh yes," he responded.

What did he think was going on?

"The people in Pennsylvania, I've actually tracked back on them," Leichtman said. "There's definitely a plume from one of the coal-fired power plants that just goes right over them. And the one in Iowa, it's a little less obvious because actually he's in the Amana Colonies, but I have seen reports of the area around Amana having elevated levels of mercury in the environment."

As it happens, the Pittsburgh Post reported last week that Pennsylvania has four of the nation's 10 "dirtiest power plants." Mercury is a byproduct of coal combustion.

Leichtman also believes that northern states "get most of the prevailing wind that comes across the Pacific. You get that trans-Pacific flow which is all Chinese mercury. We're getting a load of Chinese mercury, as far as I can tell."

Leichtman's comments meant that the two people I talked to, who knew anything about autism among the Amish, independently brought up mercury exposure -- in vaccines and in the environment-- as the cause of most of the cases.

That's a link others have made, although not to the Amish, whose autism prevalence has apparently never been studied:

- "We believe that thimerosal and environmental mercury -- which are worldwide pollutants -- are behind the surge" in autism in the 1990s, wrote Sallie Bernard in 2002. She is a founder of the group Safe Minds, which wants mercury out of all medical products. Bernard co-authored a controversial 1999 study about thimerosal, "Autism: A novel form of mercury poisoning."

- "In the end it is mercury in the brain that causes such problems, and that mercury can come from several sources," said Boyd Haley, chairman of the chemistry department at the University of Kentucky and another maverick on thimerosal.

"Therefore, a logical approach is to think that all mercury exposures are additive, even if some may be more causative than others."

Haley cited a recent Texas study, first reported by United Press International in March, that found an association between autism rates and exposure to industrial mercury emissions in Texas counties. One county with high autism but low exposure to mercury emissions turned out on closer inspection to be the site of a huge abandoned mercury mine, the researchers found.

Leichtman believes the damage to children is being done by environmental mercury, not the mercury in vaccines (my own research makes me think that if it's either, it's both). He said he can detect elevated mercury levels in about half his 500 autism patients.

"Environmental mercury is horrible," he said, "and I think that's where it's coming from. To me, people with autism are the canaries in the coal mine. A lot of them are reflecting the damage from all of that."

Leichtman, like a number of other doctors, is trying to flush mercury out of autistic children through a process called chelation (key-LAY-shun).

Chelation as a treatment for autism is unproven and controversial (what about autism is not unproven and controversial?), and it carries a risk of serious side effects. Chelation has been used for 40 years in cases of heavy metal toxicity, including lead poisoning.

But does it help children with autism?

"The people in Pennsylvania wouldn't take chelation," Leichtman said, and noted the Amish aversion to medical procedures and drugs. "One in Iowa did. He certainly did better."

We'll look at chelation and its implications in the next column.

May 17, 2005

A Birthday Idea

On one of the autism lists I belong to, there was a mom who was sharing her sadness over her son's 3rd birthday party. Birthday's are hard because it just highlights our little ones inability to engage in the fun things in life.

I thought I would share what we did for Chandler for his 3rd birthday this year. We had a tiny party for him, just family and two little girls who really like him with only one parent to accompany them. That way the focus could be on him just in case he decided to engage with us during the "party".

I put my expectations aside, only opened one present (I did it with his hands and as soon as he saw the Thomas train inside he finished up), ate cake and that was it. He seemed to enjoy it, or at least he enjoyed the cake and the train and didn't get upset by a big crowd or go off and play by himself. That is probably the best we could hope for at this stage.

I also sent out an evite to "Chandler's Birthday Unparty" to the rest of our friends. It read:

From: Scott & Ginger Taylor
When: Friday, March 11, 11:59pm
Help us celebrate Chandler's 3rd birthday with a Birthday UnParty!

As many of you know, our quiet little guy tends to get lost at big parties, so we have decided to have a tiny little family birthday party for him this year. That way the spotlight can stay on him.

While that precludes us from inviting you to the usual "big party with all our friends", we would like to join us in a Birthday UnParty. We request that on Friday, March 11, you take some time during your day and pray for our special little guy and maybe talk to your little ones about him and what a sweet boy he is. Just have a little extra love for him in your hearts that day.

We thank you in joining us in our special observance of his special day.

We got a lot of really nice responses and it was great to have the extra encouragement. It made me feel good to know that even though we couldn't have the party we wanted to, that our friends were celebrating him anyway.

May 16, 2005

My Hiaku

My house is a mess
Chandler tears apart paper
I stare into space

Please feel free to add your own to the comments section.

May 15, 2005

I Want To Trust Doctors, Really I Do...

Found this to day and it just crushed me. I began having contractions with Chandler at 5 months, and since my older son was born 7 1/2 premature, I was immediatly put on bed rest and terbutaline. I staved off preterm labor and he was born at 36 weeks to the day.

The irony is that my preemie is perfectly healthy and bright, and my term baby can't talk.

I feel nausious.

Pre-Term Labor Drug Sensitizes Brain to Pesticide Injury

media contact : Kendall Morgan , 919-660-1306 or 919-684-4148

DURHAM, N.C. -- A drug commonly prescribed to halt pre-term labor and stave off premature birth might leave the brains of children susceptible to other chemicals ubiquitously present in the environment, according to research conducted on laboratory animals by Duke University Medical Center pharmacologists. Their new study found that rats exposed to the pre-term labor drug terbutaline suffer greater brain cell damage than those not given the drug upon secondary exposure to the insecticide chlorpyrifos.

The double exposure caused damage to brain regions known to play a role in learning and memory, the team reported in the March 2004 issue of Toxicology and Applied Pharmacology. The result might therefore help to explain earlier suggestions that children whose mothers are administered terbutaline suffer cognitive deficits. The National Institutes of Health supported the research.

Premature labor occurs in approximately 20 percent of all pregnancies in the United States. Of those, an estimated 1 million women annually are treated with terbutaline or related drugs to halt the early contractions. The drugs administered to pregnant women also penetrate to the fetus where they affect brain development.

The work highlights the synergistic and unpredictable effects that exposure to multiple chemicals can have on the brain, said senior author of the study Theodore Slotkin, Ph.D., professor of pharmacology and cancer biology at Duke. Moreover, just as some gene variants confer heightened disease risk, the study suggests that certain early drug or chemical exposures can predispose people to particular ailments, he added.

"The adverse effects of sequential exposure to the two compounds on certain brain characteristics were more than the sum of the two agents' independent effects," Slotkin said. "Our findings suggest that exposure to drugs like terbutaline early in development can leave individuals set on a hair trigger for further problems when subsequently faced with environmental chemicals."

Sensitive subgroups should be taken into consideration when determining safe levels of the chemicals in the household and the environment, Slotkin said.

Chlorpyrifos was one of the most commonly used insecticides in the United States for both agriculture and household uses prior to the year 2000 when the EPA began restricting the chemical from home use in stages. However, chlorpyrifos is still widely used for agricultural purposes and residues of the insecticide can occur on produce.

The highest exposures to environmental contaminants, including chlorpyrifos, occur in young children due to the fact that they crawl across the ground and other surfaces and put objects in their mouths, Slotkin said. Children also consume a greater volume of food and water -- often containing pesticides -- relative to their body weight compared to adults. Studies of chlorpyrifos levels in school-age children have found that virtually everyone is exposed, he said.

The researchers administered terbutaline alone, chlorpyrifos alone or terbutaline followed by chlorpyrifos to three groups of young rats. Rats received terbutaline at 2 to 4 days old, a time equivalent to the early third trimester of human development. Chlorpyrifos was administered at day 11 to 14. A fourth untreated group served as a control.

Both chemicals independently caused brain injuries not seen in the control rats, including the loss of brain cells and the nerve cell projections critical to communication among neurons. The effects persisted into adulthood.

The combined chemical treatment further aggravated the chemicals' damaging effects on the brain, the team reported. The brains of rats exposed to both chemicals also showed reduced nerve cell activity that the researchers did not observe in rats exposed to either chemical alone.

Furthermore, portions of the brain central to learning and memory, including the hippocampus, suffered significant loss of brain cells and nerve cell projections in rats exposed to both chemicals. Rats administered either chemical alone showed much smaller effects on these regions, the researchers said.

"It is increasingly clear that environmental toxicants target specific human subpopulations," said Slotkin. "This study suggests that early drug or chemical exposures might underlie some of these differences in susceptibility. We need to start looking for such vulnerable groups and considering them when making decisions about legislation. It is not adequate to set the allowable concentrations for certain chemicals at levels that might be unsafe for large segments of the population."

Coauthors on the study included Melissa Rhodes, Ph.D., Frederic Seidler, Ph.D., Dan Qiao, Ph.D., Charlotte Tate and Mandy Cousins, all of Duke.

May 14, 2005

Chromosome 17

Research Getting Closer to Autism Gene
Robert Preidt

FRIDAY, May 13 (HealthDay News) -- Scientists have honed in on a segment of chromosome 17 as the likely home of a gene strongly linked to autism.

In previous research, the same team of researchers at the University of California, Los Angeles, found this gene contributes to autism only in boys -- which may explain why boys are at much greater risk of developing autism than girls.

This is the first time scientists have been able to identify a predisposing gene for autism and then duplicate the finding -- an important step in providing scientific evidence, the researchers say.

The UCLA team is now conducting DNA testing in an effort to identify the precise location of the autism gene on chromosome 17. This research could lead to better screening and potential treatments for autism.

The study will appear in the June issue of the American Journal of Human Genetics.

Autism is a developmental disorder that typically starts before age 3, and causes problems with communication and social interaction, among other difficulties, according to the National Institutes of Health.

Meet Bud

And his very clever MOM-NOS. Her stories about Bud make my husband and I giggle endlessly. I only hope when Chandler starts having conversations with us that they are this entertaining.
Monday, February 14, 2005

Coffee Buzz
You know you're addicted to coffee when:you drive by Dunkin' Donuts and from the back of the minivan you hear your echolalic 5-year-old squeal "I'll have a medium coffee, milk, one sugar!"

All you fans of echolalia don't miss This Child Brought to You By...

May 12, 2005

I Love Twin Studies

Autism: Lots of clues, but still no answers

14 May 2005
Celeste Biever
New Scientist Print Edition.

THE risk of autism in twins appears to be related to the month they are born in. The chance of both babies having the disorder is 80 per cent higher for January births than December births.

This was one of the many findings presented at the conference in Boston last week. It typifies the problems with many autism studies: the numbers are too small to be definitive - this one was based on just 161 multiple-birth babies - and even if the finding does stand up, it raises many more questions than it answers. For instance, is infection during pregnancy to blame? Or another environmental factor that varies with the season? Is it the birth date that is important, or the date of conception?

While it is now clear that autism is a complicated combination of genetic and environmental factors, no one knows exactly what these environmental effects are and which genes they might be interacting with to cause autism. "We clearly have a daunting task ahead of us," Craig Newschaffer of the Johns Hopkins School of Public Health in Baltimore, Maryland, and a member of the birth-date study team, told the conference. "We have had slower-than-hoped for progress finding autism genes, and now we see an increased focus on the environment in autism."

Based on twin studies, the consensus is that, depending on how you define autism, between 60 and 90 per cent of cases are genetic in origin. And although progress has been slow, geneticists are homing in on some of the genes involved.

Eric Geschwind of the University of California, Los Angeles, announced that he has linked a region on chromosome 17 to autism, confirming earlier studies. Other recent studies have linked mutations in specific genes to some cases of autism, including two genes that code for brain proteins called neuroligins, which are involved in the transmission of nerve impulses. Further emphasising the genetic basis of the disease, Geschwind has also found that although people with autism have larger heads than the population in general, on average their heads are no larger than those of siblings and parents without the disorder.
“What if you have an infant with some genetic susceptibility to autism and then you add a toxin? It looks very disturbing”

One of the reasons progress has been slow is that many genes appear to be involved. Some people with autism have mutations in one gene or set of genes, and others have mutations in different ones. That makes it hard to carry out the statistical studies needed to pinpoint the genes involved. Geschwind thinks that the best way forward is to first identify smaller, measurable components of the disorder, and then to look for the genetic underpinnings of each one.

But it is not just about genes. "The genetics is very compelling and explains most of the risk, but there is room for the environment since genetics cannot explain it all," Geschwind says.
“The genetics explains most of the risk, but there is room for the environment since genetics cannot explain it all”

Identifying which genes and which environmental factors are interacting presents enormous challenges, says Ellen Silbergeld, an epidemiologist at the Johns Hopkins School of Public Health. "One real problem is we don't have a good idea of the disease's history," she says. She points out that our understanding of heart disease was greatly helped by the Framingham Heart Study, which followed around 5000 individuals for up to 50 years.

Autism not only lacks a similar study, but also presents more challenges, because fewer people develop autism than heart disease, and because it might be not one but multiple disorders with related sets of symptoms. "Are we talking about 10 different diseases?" Silbergeld asks.

Complicating the story still further is the apparent rise in autism. The Autism Society of America estimates that there was an increase of 172 per cent in the US in the 1990s, though the population grew only 13 per cent. It is still not clear if the rise is due to some new, presumably environmental, factor or if doctors are simply becoming better at diagnosing the disorder. But that has not held people back. "We are going through a frenzied period," says David Amaral at the University of California, Davis. "People speculate wildly about the things that could cause autism."

Some have focused on exposure to viruses or vaccines, others on pollutants such as mercury. Emitted by factories and power stations, some forms of mercury build up in animals such as fish and enter the food chain. In 2003, a small study by paediatrician Amy Holmes found much lower levels of mercury than normal in the hair of children with autism (New Scientist, 21 June 2003, page 4). Her hotly contested theory is that they have an impaired ability to excrete mercury.

In Boston, Jim Adams, a chemical engineer at Arizona State University in Tempe who has an autistic daughter and believes that mercury causes many cases of autism, presented results supporting Holmes's theory. He found that children with autism have up to three times as much mercury as normal in their baby teeth, yet lower levels in their hair.

And in December last year, Jill James of the University of Arkansas published a study showing that people with autism have raised levels of glutathione, a compound that detoxifies mercury. But as so often with autism, far more studies are needed before any conclusions can be drawn.

Others are looking at polychlorinated biphenyls, or PCBs. Banned in most countries since the 1970s, PCBs still persist in the environment and in animals and people. A team led by Tal Kenet of the University of California, San Francisco, found that one type of PCB can devastate the auditory cortex in rats, the brain area that processes sound signals according to frequency.

Some people with autism have abnormal auditory cortices and difficulty communicating verbally, despite having perfect hearing on regular hearing tests. Kenet speculates that this could be linked to exposure to PCBs or other toxic substances. Although it is far too early to confirm the link with autism, no one had ever looked at this before. "What if you have an infant with some genetic susceptibility to autism and then you add a toxin? In all it looks very disturbing," she says.

There could be a whole host of chemicals that wreak havoc on the brains of genetically susceptible individuals, team member Isaac Pessah of the University of California, Davis, told the meeting. He points out that according to the US National Toxicology Report, between 60 and 80 per cent of the chemicals we are exposed to through pesticides, cosmetics and foods have not undergone adequate risk assessment.

From issue 2499 of New Scientist magazine, 14 May 2005, page 14

May 11, 2005

Fred Green is FOUND!

Autistic Boy Reunited With Missing Pet Iguana
Fred Green Missing For More Than 1 Week

May 10, 2005

IMPERIAL BEACH, Calif. -- A 12-year-old autistic boy from Imperial Beach was reunited with his pet iguana Monday afternoon, 10News reported.

The last time Steve Stutzka saw his beloved 3-foot long iguana, Fred Green, was more than a week ago before she -- yes, Fred's a female -- disappeared from the backyard.

The family searched high and low, but to no avail. Stutzka and the rest of the family was heartbroken.

But, on Monday afternoon, the tides turned when three sophomores from Mar Vista High School showed up at Stutzka's house with the iguana.

According to 10News, Nick Alexander, Jonathan Hernandez and Dante Flores were on their lunch break when they saw Fred Green.

"We were coming down the street from school and we (saw) the lizard coming right here. We see it lift up its head, kinda, and my friend Dante was like, 'There's a lizard right there.' And we were like, 'Oh dude, let's go over there and go get it,'" Alexander told 10News.

Capturing the iguana was easier said than done, but luckily a neighbor loaned the boys a towel and soon enough the iguana was caught and on her way home.

Stutzka's mother, Pam Stutzka, couldn't believe her eyes when she saw Fred Green.

"(I was) astonished. Absolutely astonished," said Pam Stutzka.

"I think she was about to cry. She was just like so happy. I felt pretty good because I actually did something nice for once," Hernandez said.

Hundreds of volunteers, including the sheriff's search and rescue crew, helped Stutzka look for his beloved pet iguana, Fred Green.

Sheriff's deputy Mike Forbes used his infrared-heat seeking camera to help find Fred Green, a helicopter searched the grounds from above for the missing iguana and on Monday students from Mar Vista High School volunteered their time to look for the creature.

Pam Stutzka thanked the community for their support.

"We've had calls from Carlsbad, Escondido. I got a call from Ohio," Pam Stutzka said.

The story, which was first posted on, soon got national attention. The family received offers from people volunteering to put up reward money.

"I wanted to thank all of San Diego County, especially Imperial Beach. We love our community. The outpouring of everyone's love and prayers -- that's why this happened," Stutzka told 10News. "I didn't have any doubt. This was meant to be. Those boys were the ones that were supposed to find Fred and they did. I just thank you. Thank you for all the prayers and undying affection."

According to 10News, Fred Green was in good condition. The family said in order to prevent losing Fred again, she will be microchipped.

Letting Go Of Chandler

From the day our children are born, we have to begin letting go of them.

Our instinct as parents is to hold on tight and protect them from the harsh world and tell them where to go and what choices to make because we know better than they do. But if we are to serve them we have to let go of them just a little bit at a time as they begin to master their own lives, occasionally stepping back in when they are having trouble navigating (done with most frequency between the ages of 14 and 16).

My sons are 3 and 4 1/2 and at this stage of parenting I should still be able to, as my friends can, languish in that "My Boy's Gonna Be The President" dream where the possibilities of what they will become are wide open. The natural progression of parenting seems to be that as your child grows, and as the two of you get to know the person that they are (and are becoming), that field possibilities narrows. It happens gradually as you as a parent mature gradually, (hopefully) becoming more trusting of your child's decisions and less needy of having your child be The President. Then, eventually, your child is 16 and you don't so much need him to be The President as much as you need him to remember to clean his room and bring home the car in one piece.

When you find out that your son has Autism, you have to do 20 or so years of maturing in one day. You have to let go of all the expectations that you have for him, and for what you thought the rest of your life would be like. There is no 'growing out of' the adolescent fantasies that you have carried around for years, the rose colored glasses are just ripped right off, and it is painful.

It is painful, but not necessarily a bad thing.

Learning to give up some of the things that you have always wanted and face reality can be a gift. It has been a year since we found out about Chandler's Autism, and I am at the point of having gone down the path just far enough to look back and see how far I have come. Not how far Chandler has come in his "recovery", but how far I have come as a mom and a person and a grown-up.

I was fortunate to grow up in a church that had a lot of good teaching and preparing for life stuff. One of the great perspectives I learned on parenting when I was still a teenager was the idea that our children are not really ours. They are a gift from God. That they are his and he has entrusted us with their care. The idea that he has trusted these precious little ones is both a huge responsibility and a huge relief for me, because it reframes parenting in a really balanced way.

It describes a relationship to them in which I am responsible for their upbringing, but God is responsible for their life. That I am to love them and mold their character, but God is responsible for their destiny. I am merely preparing them for the journey that they will walk with God, and He will be there with them on that journey when I fail them, or when I am long gone.

For me that is freeing because it relieves me of the panic that presses on me when I begin to feel that I am responsible for the men these boys will become and if I screw up then they are doomed. (Any one else feel like that sometimes or is it just me?)

While I thought that I was pretty good compared to most mom's at "holding my children with an open hand", Chandler's diagnosis exposed my still much too fantasy based grip on My Children. After all, if I truly believed that my children were are gift from God for me to raise to the best of my ability and then offer back to him, then why would it matter quite so much to me that my boy is so different from all the other little boys. Certainly I would worry for him, but even then, if I trust that God made Chandler just as he wanted him to be, and had charted out his own distinct journey, should I not be able to trust Him that He will take care of this little life that He loves even more than I do?

Hudson Taylor wrote:

...the rest which full identification with Christ brings. I am no longer anxious about anything, as I realize this; for He, I know, is able to carry out His will, and His will is mine. It makes no matter where He places me, or how. That is rather for Him to consider than for me; for in the easiest position He must give me His grace, and in the most difficult, His grace is sufficient.

It matters little to my servant whether I send him to buy a few cash worth of things, or the most expensive articles. In either case he looks to me for the money and brings me his purchases. So, if God should place me in serious perplexity, must He not me much guidance; in positions of great difficulty, much grace; in circumstances of great pressure and trial, much strength? No fear that His resources will prove unequal to the emergency! And His resources are mine, for He is mine, and is with me and dwells in me.

I am a Christian. Years ago I stepped up to God and, in gratitude for his love and sacrifice for me, handed my life back to him. As Isaiah did after meeting God, I said, "Here am I. Send me." If I really meant it, then it should matter little where he sends me, or what hardships I face. I volunteered for service, and was given a very important assignment, to serve my wonderful family and my precious boys.

I have a very wise friend named Judy Nelson. When I was in college, and writhing in pain over men and stricken with panic and fear of the future, Judy used to say, "Ginger, it all comes down to whether or not you really believe that God is committed to your best interest". Her challenge rings in my head a lot these days.

If I really believe that he is committed to my best interest, and that he really loves my children more than I ever could, then despite the very natural instinct that I have as a mother to worry about my boys, I must know that everything is fine, because it is as God has had planned all along. And God can be trusted with my boys.

So this is where we circle back around to Letting Go of Chandler. When I look at the gorgeous faces of Webster and Chandler, the love that I feel for them is practically brain melting. The thought of them going out into the world gives me a stomach ache, but the harsh revelation of our little one's "specialness" is an early reminder that our job is to get them ready to do just that, be able to go out into the world and set off on a journey that we can't really go with them on. ("Ships are safe in the harbor, but that is not what ships are for") Webster is benefiting in that I spend much more time thinking much farther ahead for him than I would have, had we still been allowed to loiter in "President Taylor" land.

So I am trying to learn to 'let go' of Chandler even as my love for him grows. I am trying to learn to serve him rather than serving my own ego's idea of what my son should be. The better I get at it, the more I see the poetry that Chandler is.

After weeks of searching, Dan Olmsted still can't find any more autistic Amish

This series begs the question, why the heck isn't Lancaster County crawling with investigators from the CDC and HHS? If I was Secretary Leavitt, that place would look like a scene out of "Outbreak". Can someone get him on the phone and let him know that this is perhaps something the government might look into?

The Age of Autism: Witness
By Dan Olmsted

Lebanon, PA, May. 10 (UPI) -- Frank Noonan is a family doctor in Lancaster County. When I met him for lunch last Saturday, he was still in golfing togs from his weekly game -- "Saturdays are my 'I can breathe' day," he says. Even so, he stayed after our meal to meet a cancer patient who phoned him at the restaurant.

He's energetic, friendly, straightforward -- the kind of doctor people want.

People such as the Amish. As a family practitioner, Noonan sees patients of all ages. He combines traditional and alternative medicine in an "integrative" blend to suit the individual. The Amish like that approach -- they prefer to see just one doctor for all their care, and their first resort is herbs and supplements, not prescriptions and pills. For one thing, most don't have insurance.

Based on movies like "Witness" and the image of the Amish in horse-and-buggies, many people -- myself included -- assume they have virtually no contact with such outside influences as modern medicine.

Not so.

Noonan has been a doctor in Lancaster County nearly 25 years and about a third of his patients are Amish, making his Amish practice one of the area's largest. He has seen "thousands and thousands" of the county's 22,000 Amish residents and others who live nearby.

I found him through an Amish-Mennonite mother of an autistic child adopted from China. She told me she has seen almost no autism among the Amish, but that I should talk to Noonan because he has treated so many Amish for so long.

Based on my reporting so far, there is evidence of only three or possibly four Amish with autism in Lancaster County, where there should be dozens at the 1-in-166 prevalence in society at large. One of them is the adopted Chinese child. Another was described as having "a clear vaccine reaction" at 15 months, after which she became autistic. I have not met that child and can't vouch for that description.

When I called Noonan three weeks ago, he seemed surprised by my question about Amish autism but agreed to think about it, check around and tell me what he found. At lunch, Noonan said he hesitated to offer an opinion when I first called because it
had never occurred to him. But now, he said, he realized something.

"I have not seen autism with the Amish," Noonan told me. "And I say that having seen a ton of Amish patients. I may be able to think in all those years of maybe one case of (Amish) autism I've had."

"I've checked with some of my colleagues," he added, "and they all tell me it's very, very sporadic that we'll see a case of autism among the Amish." From 2000 to 2003, Noonan also saw patients at the Wellness Center, which is operated by the Amish and Mennonites. About 90 percent of those patients are Amish, Noonan said, and he saw thousands of them. But still he saw no autism.

"Absolutely none, in the almost three years I was there. We would have seen it. It's not something they would hide. They're not like that."

Noonan said he sees "a fair amount of mental retardation among the Amish." A significant percentage of people with autism have mental retardation as well as severe speech and hearing problems. Wouldn't they show up on the radar of those who track and treat such issues? And wouldn't autistic Amish see Noonan for the same inevitable illnesses and injuries that bring the rest of their family to him?

I tried various ways to find gaps in Noonan's account. Perhaps autistic Amish children were seeing pediatricians or specialists as opposed to family doctors ...

"The Amish don't go to specialists like we do," he responded. "The Amish go to family docs for all their pediatric care. So at least in Lancaster County, where I practice, almost all pediatrics among the Amish is done by family docs."

"You'll find all the other stuff, but we don't find the autism," Noonan said. "We're right in the heart of Amish country and seeing none. And that's just the way it is."

In my last column, I said this interview was a tipping point between absence-of-evidence (not finding many autistic Amish) and evidence-of-absence (finding there might not be many).

The case is still open, but does anyone disagree that Dr. Noonan makes a compelling

May 9, 2005

The subscription service has been down

So you you have not gotten notices of the site being updated since mid February apparently.

This should correct the problem, if not I will find another service.

Please come by and look at the interesting things that have been posted including Chandler's first unprompted sentence.

May 8, 2005

There are good people in the world

Volunteers Search For Pet Iguana By Land, Air
Autistic Boy, Family Heartbroken Over Missing Pet
POSTED: 12:48 pm PDT May 6, 2005
Channel 10 News, San Diego
IMPERIAL BEACH -- Dozens of volunteers are coming together to help the family of an autistic boy search for his lost iguana, 10News reported.

Steve Stutzka, 12, is heartbroken over his missing iguana, Fred Green.

The last time Fred Green was spotted was in the 1100 block of Ouden Lane in Imperial Beach.

As a sheriff's deputy, Mike Forbes knows how to find people. But Thursday night, he used his tracking skills for an unusual mission -- find Fred Green the iguana.

When Forbes heard Fred Green was missing, he volunteered to use his infrared-heat seeking camera to find the iguana.

Stutzka is best friends with Fred Green and has been searching for him for days.

While Forbes and Steve use their cameras on the ground, San Diego helicopter pilots hover above, using their infrared devices to search for Fred Green. Students from Mar Vista High School will be searching for Fred Green on Monday, as well as the sheriff's search and rescue team.

Steve and his parents told 10News they don't care who has the iguana, just bring him back, even anonymously.

If you have any information please call (619) 429-7319.