Monday, June 22, 2009


It’s healthy to have a good fantasy life. At least that’s what I’m told.
So here it is Saturday evening 4:50pm and I am drifting into fantasy while driving into town to gas the car and buy groceries for the next week. I just dropped the kids at home after a whole day and a half of swimming and hanging with their cousins at grandmas. I was wiped- almost falling asleep…. When the fantasy hit.

I am tired and I really would like to go home. I would really like to soak in a big, hot bath- in a sunny, spacious bathroom. My fantasy bathrooms are always sunny and spacious, where the bathtub is so big and is surrounded by windows that are surrounded by woods- or a really nice walled off garden. So at this point, as soon as I realized I was fantasizing I took a quick reality check. Not going to happen. Because #1. We have a small (puny) tub, in a small interior bathroom (not sunny), and this small little tub is fed by a small little, less then perfectly functioning, hot water heater- and I know from experience that the little hot water heater can give you a 5 minute shower or run a load of diapers, and that in my last house the, bigger, nicer (working) water heater with twice the hot water was still just barely enough to fill our decent size whirlpool bath. (yes, I miss that bathtub, and that larger house more often then I would have thought)

So anyways, I thought I would just forget these details of my real life and see where the fantasy would lead me. And it led me, right after the nice long soak, to a clean bedroom- with my clothes laid out and waiting for me (and not being sat on by some little 5 year old with stinky pants who was waiting for me to vacate the bathroom). After that, I would emerge into the world…. refreshed, relaxed and clean in to a house that is clean and pretty- where someone even had taken the efforts to put out several bouquets of fresh, fragrant (lightly fragrant, and not overly strong) flowers in several locations, which served to add a dash of light and bright life to our living room- the flowers were in even in my (current) favorite colors of orange and yellow, highlighted with some greens and baby’s breath, that just seemed to say- welcome to your day.

And then I would enter the kitchen, the large, spacious, sunny kitchen. (did I mention clean and organized?) and there- spread on the table would be a light, healthy dinner- already for the family to eat. My kids would come in- scrubbed and tubbed- with their rosy cheeks glowing, wearing beautiful white, light weight summer PJs. They would smile at me as they entered and proceed to sit down quietly and fold their arms for prayer.
My hubby, smiling, would sneak up from behind me and cover my eyes and say “Guess what I made for you?” And then he’s show me some awesome desert- with chocolate and berries. He would let me have a taste, but make me promise to wait until after I enjoyed the main course. The kids would laugh gently and quietly fold their arms. The dinner would melt in my mouth and fill all of my nutritional voids for the day.

That is as far as my fantasy got before I arrived at the grocery store. Gassed the car, bought the groceries, drove home, made dinner, planted the tomatoes, bathed the kids, treated their sun burns, made treat and dropped like a ton of bricks.

Sometimes I look at my fantasies and think that I should full fill them- how can I get me life to be like my fantasy? Sometimes that’s a valid question. If I’m fantasizing about pancakes, then by golly, I should get off my butt and go make some. If I am fantasizing about a nice garden, then maybe I should works towards that goal. But if the fantasy is about something I really don’t care about or don’t really want (like life as a movie star), then maybe I should just ignore it. The problem with this fantasy is that it was right on the ragged edge of being able to pull off.

Do I put in the efforts required to reach the fantasy, or parts of it? Or do I chalk it up as crazy?

I didn’t know. So I bought myself some brownies at the grocery store and ate them on the way home.

Saturday, June 20, 2009

This week in iphone pics

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I dont know if you can tell- but Most of these empty posts were attempts to send pictures from my phone to my blog. The words made it, the pics didnt. Sorry- I will have to figure out how to do that.

Re: Noodles

this must mean you are enjoying the cabin and beach today.. awesome.. that scruntchy face is terrible.. a good one to torture her with many years hence..
today has been a nice quieter day.. I am very tired again.. even though I already had a nap.. and now a nice supper of ham, bubbles and squeek and duck egg... very tasty and then a sticky pudding that was awesome..
The day started out with a parade, cool weather, and then a day in the trade show part of the event.. I bought a few pashima scarfs... with Rotary logos on them.. very pretty and a warmer pullon.. thingy... so all in all a very nice day.. went swimming last night... and am now ready to sleep again. I think..
nothing really exciting.. have met lots of nice people.. chatting here and there.. that is what it is all about...
tomorrow will be a long day.. up early for the first session of the conference... then a tea.. and then some wait time.. and then a renaissance festival at a real restored castle.. so.. it should be fun...
so tell me more about your day.. and what everyone is doing.. etc..
love ya lots

Raya Newbold wrote:

Sent from my iPhone

Fwd: "the grouch" eating sand

Sent from my iPhone

Begin forwarded message:

From: Mike Newbold <>
Date: June 19, 2009 8:02:54 PM CDT
To: A Newbold Raya <>
Subject: "the grouch" eating sand

Sent from my iPhone

Fwd: Future martial artist

Sent from my iPhone

Begin forwarded message:

From: Mike Newbold <>
Date: June 19, 2009 8:04:39 PM CDT
To: A Newbold Raya <>
Subject: Future martial artist

Sent from my iPhone

2 am

Sent from my iPhone

Oodles of noodles

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Scrunch face

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Cute shannon

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Sent from my iPhone

Friday, June 19, 2009

Monday, June 08, 2009

intersting article

Erasing Autism
Scientists are closing in on the genes linked to autism. So why is
Ari Ne'eman so worried?
Claudia Kalb

From the magazine issue dated May 25, 2009

It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels,is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this
about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.

Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered—how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says. He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a
medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.

Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest.
very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today.

Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."

The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes. I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific
genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.

When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."

The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting.
Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would
have been better off not born. And who can blame them?

Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as
leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very exhausting act."

He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.
One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.

Tuesday, June 02, 2009

Ewan's request

Dear bob and ray
I wood like $165.99 for a bike for Ewan Newbold so he has a bike to ride on the palle bunyen trall. (Paul Bunyan Trail) i wood learn to ride a bike safe and sond with a helmit ney (knee) pads elb pads and learn trafick laws .

snelye Ewan Newbold.