Stand Tall

This is a great article. It's long, but there's a lot to say. Most of us are just trying to live our lives, but we've been given that opportunity, we assume it as a right. Patricia Bauer explains how it feels for us to realize how and why our society is denying thousands of people that opportunity.
I invite you to read it in its entirety.

Stand Tall

Dear Sam,

Dear Samuel,
I want you to know how proud I am of you. Whether you know it or not, you've learned some things in the last couple of weeks, without even trying. I've learned some things, too.
You've learned that being honest, and standing up for someone else does not always bring the response that you'd expect from those 'over' you. You were singled out, and made to feel that you had done something wrong, belittled in front of your classmates, and then told that it was wrong to cry. It was wrong for that teacher to talk to you the way that she did. You were right to tell us about it. I'm pretty sure that you didn't expect telling us would mean that we would move you to a different class in a different school, either. I know you know that we did this because of many other reasons, this was just kind of the 'last straw'for us all. Sometimes, standing up for what is right means that you get hurt, too, at the time. By doing what you did, though, you showed your classmates, your teacher, and everyone the sort of character that you already have.
I hope that you have learned that good things will happen when you do the right thing, too. Most important, you will know in your heart that what you did was right. It's really great for Mom and me to see that you are liking your new class and teacher - you've been more excited about school this last week than you have been in a long time. You're helping Mom by riding the bus with Emma, and Emma loves to have you around at school. You're such a good guy with her but hey, you're her brother, right? I hope you're finding friends. I changed schools a lot when I was a kid, I know that that can be hard. Just be yourself.
I learned how much you know - that, even when I was angry at your teacher, you understood and told me that she may have been trying to help you, in a strange way. You're probably right. Seeing someone else's point of view, even when they're being mean to you, is an ability that some adults don't have.
I know it's kinda weird to tell you this in an email, but I wanted you to read it, and maybe keep it and read it over again on a day maybe when things aren't going so good. Sometimes, putting things in writing makes them more permanent, not just a pat on the back from old Dad.
I Love You very much, and I will always.
Dad

Vacation '07, Chapter V

After a lazy morning with Alex and Davey, we stuff our stuff back into the Honda and head south, over the hills of Marin County to the Golden Gate. Funny, you can't get to the visitor center on the North end when you're heading southbound, but we manage to take the road to Sausolito far enough for some fog-laced pictures. The City is what it always has been, Fisherman's Wharf, Ghirardelli Square, a wistful gaze at the Buena Vista. Sam and I split some scampi and linguini for lunch, followed by the requisite purchasing of the refrigerator magnet at one of the wharf's fine stores. After grabbing some chocolate, Vicky and Sam take a cable car ride, Emma and I follow in the car. We enjoy some traffic out of town, and encounter some on the road to San Jose; an accident renders our shortcut moot. We get to our room in Monterey about 8 and enjoy delivered pizza.
Monterey Bay. The Aquarium. There's about 3 blocks of complete renovation going on near the Aquarium, so we are forced to take our midday nutrition inside the attraction, which turns out to be a frustrating, noisy affair. Finally negotiating our way to the dining room, the kids don't eat the overpriced stuff we bought them. It's the family moments like these that make it all worthwhile.

The Aquarium - I think this is the 3rd time we've visited - is not the *wow* that if first was, but it's all presented so very well. Sea Otters. The jellyfish exhibits can entrance you for hours, if you let them. Watching a huge sunfish loll its way around the tank. The tidal exhibit that dumps a thousand gallons of water over your head every 20 seconds or so. The aquarium is built out over, and into the bay, just off the balconies seals bask on rocks with birds coming and going. We spent 5 hours there.
Back to the room after finally finding a grocery store. The indoor pool at the motel is kinda icky, but we manage to make a good time of it. Nothing like a nice soak in the spa after a day of watching fish.
Keeping to our rigid schedule of leaving by 11, we head south to Point Lobos State Park. This lovely spit of land is just south of Carmel. There are lots of trails along the rocky coast, and tidepools to die for, if one pines for tidepools. If you've ever wondered what a huge rock covered in cormorant and seagull poop smells like, then this is the place for you. The views are spectacular, including a few fog-shrouded manses to the South. We leave Point Lobos for a late lunch at Subway and a lunge down highway 1. It's mostly cloudy, so the views are dramatic when revealed. Highway 1 is probably one of the most dramatic drives that this country has to offer, in any conditions. Today, the fog is boiling up the cliffs, but the roadway is clear, a path through the swirling clouds jumping the roadway and grabbing the hillside over us. Briefly stopping for some obligatory seal pictures, we glimpse Hearst Castle on the way to the restrooms of Cambria (shoulda skipped the refill at Subway). Cambria is one of those lovely little towns (I spent a week here, one weekend) where gas is always a dollar more than it is in the real world, and, while they'd love for you to stop and buy some paintings or antiques, please keep moving down the road and leave us alone, thank you. We oblige, and find our way to San Luis Obispo, Mexican Take-out, and air conditioning. It's humid, and we're treated to a lightning storm at 2 a.m., with cracking thunder and fat raindrops.
The last day, we manage to stretch a 5 hour drive into an 8 hour one, not much to say except LA traffic stinks, but so does San Diego's. The LA delays put us into the 805 merge at the right time to enjoy the added burden of a truck overturned just down the road. It took us an hour to go about 5 miles. In our absence, Paco the kitten expressed his frustration and loneliness by unraveling the toilet paper from two bathrooms, the house is otherwise just musty but fine. It's hotter here at home than anywhere we've been. We managed 1500 miles, 22 miles to the gallon, thank you very much, and only 2 pairs of headphones were broken. All in all, quite a successful trip.

Vacation '07, Chapter IV

Out of the hotel at the crack of 11-ish, we head down highway 80. To Fairfield, home of Nellis AFB and, more importantly, the Jelly Belly jellybean factory. We buy 6 lbs. of "belly flops", jelly beans that didn't make the final cut, as it were. We ate a pizza that's shaped like a jelly bean. They should 'stick' to making candy.

Onward to Napa and Calistoga, through the fabled valley that produced, among other things, our friend Teresa. In Calistoga, we go to the shining winery on the hill, Sterling. To visit Sterling, one must take their aerial tram, then follow a self-guided tour with a few video stops and tastings along the way. It's a gorgeous view south, over the Napa valley. Sam's not having such a great time. As we're leaving, an employee down the hall from the gift shop drops an entire rack of glasses, and everyone's attention shifts. What a horrible, yet incredibly funny sound to hear at an expensive winery. I softly hear the announcement in my head, "I'm sorry, all current discounts have now been cancelled. We apologize for this inconvenience."
We make one more stop down in Napa, where I wait in the car with antsy Emma and sulking Sam while Vicky shops. I watch a skinny, yet well dressed older man tool into the parking lot in his new Bentley. The man's shoes are probably worth more than my Honda. We head back South and West toward Novato and Vicky's cousin Alex, his wife Linda, and Jack and Davey. On a two-lane highway, we encounter about 5-7 miles of completely backed-up traffic heading the other way. Then we find out why. It's Sunday, RACE DAY, and we're headed toward the track that just disgorged it's patrons onto this one and only way in or out. We find our way into line heading our direction - a traffic jam seemingly in the middle of nowhere.
We make our way to Novato, and find friends.
My wife is part of a great family. There were three brothers. Jack Miller was a professor of physics and astronomy in Claremont, CA, Oxford degrees. Probably the smartest man I've ever met. Gaylord Miller was the head of NOAA for the Pacific, they lived in Hawaii. He died before I could meet him. Vance Miller taught high school Math and science. Vance died the day after Elvis did, about 4 months after I started dating his daughter.

Alex is Jack's son,the middle son of three. Alex and Victoria have always been buds. Linda is great. Davey has autism. We didn't know this until my neice's wedding, about 18 mos. ago. It was strangely fun to sit around with them talking about ER visits and cleaning up stuff. . . you know, the usual. They have two dogs, and Emma spends much of our time there swapping spit with Nellie. Alex, among other things, is a book collector/dealer; he showed us some signed, first editions, and gave Sam a set of The Hobbit/Lord of the Rings books. Sam was duly impressed. I'm always happy to hear stories of Vance and the rest of Vicky's family, this visit includes Alex's spot-on imitation of his father's voice - a man I was enchanted with, even as he really wanted very little to do with me, a long-haired psychology major. Sam bunked with Jack, Vicky, Emma, and I stayed in the "PMS Shed", a shed that's carpeted, has TV, and a bed. We set up an air mattress for Emma, and turned the TV back on after Vicky heard rats scampering and chattering on the roof. I, as usual, was blissfully unaware of this until we were in the car, heading south for San Francisco.

Vacation '07, Chapter III

Saturday. Got out of the condo at 11:00, a five minute drive to old Sacramento. We are experiencing unseasonably cool weather, which means it's just a warm 80's. We wander the boardwalk, eventually settling on Fat City for lunch, where I have the pulled pork sandwich with carmelized onions, cole slaw, and ubiquitous fries. De-lish. It's a lovely lunch in a 160 year-old building next to the train station. Very nearly historical.

The railroad museum here is really very impressive. By the nature of the subject matter, the building is huge, and it contains many locomotives and various cars, immaculately restored, creatively displayed. Emma met a wonderful docent in the dining car (which was filled with displays of the various 'diningware' settings of many lines - really cool) who showed her how to use the dinner bell (a 4-note xylophone ala the N-B-C notes on TV). Sweetest moment of the day. We then took a ride on a train down and then back up the tracks next to the river. Sam's acting snotty beyond his years, but still personable about half the time. He's alright. Emma's fascinated, at first, then bored, kinda like me. Cool to hear the train whistle echo off the buildings, and watch the old men tinker and fuss over the locomotive. I love trains, but I don't love trains, if you know what I mean.

Somewhat unfortunately, but actually quite comfortably, we arrived at the Capitol about 15 minutes too late for the last tour. We only had about 45 minutes to wander the dimly-lit halls, which was plenty of time to gaze up into the dome, admire the turn-of-the-century office exhibits, and see the elevators that were reserved for members only. It's a lovely building, well representing our large and fabulous state. It will be noted, later on the trip, that San Francisco's City Hall is much larger and more ornate - but, of course, that's where all the money was. . .
To Wal-Mart, again, for a bathing suit for Dad, swimming goggles for Sam, and headphones for the iPod, Emma having destroyed 2 pair so far. Groceria, then 'home' for a swim and dinner. Domestic bliss. Emma and I took one bedroom, 'cause we're the early risers. I was ready for bed.

Vacation '07, Chapter II

I've said it before, and I think I finally got someone to agree with me, Yosemite is not a day trip destination. We spent more time looking for lunch than we did looking at Half Dome.

It is a wondrous valley, broad meadows ringed by tall pine trees, dwarfed by sheer, ancient granite walls, some stained by waterfalls that mostly trickle this time of year. I did gain a few moments peace on a fallen log in the shade, listening to the wind through the pines, as Emma sat down, clothes and all, into the river.
Yosemite is in the lower part of Gold Country, and we drove through Coarsegold, China Camp, and other historic remnants of what will soon be the events of two centuries ago. Once one leaves the Sierra's sharp cutbacks, the roads divide broad sections of almost rolling hills, covered with ankle-high golden grasses, dotted with oak trees. Much of the Golden State really is this color, most of the year. Eventually, heading East, you drop further into the Central Valley with its industrial farms that feed most of us. Interstate 5 and highway 99 are high speed (not by statute, but by practice) arteries through this central valley. They meet in Sacramento, where we settled into a great find, a two bedroom condo with a kitchen and garage(!). We found groceries and dinner was done by about 9:30. We're off to downtown and old town (if they ever get out of bed) today, staying here again tonight. At least there won't be much car time. In the midst of all there is to do, I am enjoying myself as much as I am able to, cynical curmudgeon that I am. Just don't tell anyone.

Vacation '07, Chapter I

This isn't exactly breaking news, but it's now recorded for posterity, on the intertubes.

It's 9 am, and I'm sitting in the dark in a Holiday Inn Express in Madera, CA. Emma's oogling in the corner with the iPod, and Vicky and Sam are still sleeping. They never make it to the complimentary breakfast.
Yesterday, we had an uneventful 350 miles or so. We'll probably do about a thousand miles on this trip, and never leave California. Think on that, Yankees. The Wide Open spaces. This also means we gotta drive forever to get anywhere from the lower left hand corner of the country. Of course, it's a bit silly to leave a major tourist attraction to see others, but it is the American way.
It certainly is different, traveling now as opposed to when I was a kid. I mean, we used to head out in the middle of the night to cross the desert(it was cooler - no air conditioning, and cars were more likely to overheat), and I'd crawl up into the back window and look at the stars as we drove. Now, we're strapped in, there's a video system set up in the car with Elmo for Emma, Sam's playing nintendo games on his Wii, and Mom's playing podcasts through the radio from her iPod. We found the motel, a bit late, and set out for dinner in this farming town. Your selection. . . The International House of Pancakes! It was either that or a place called "Chubbies." The ambiance included picture boxes with dinnerware in them, an interesting medium. Andy Warhol would have been momentarily intrigued, then bored.
I had country fried steak, eggs, and pancakes for dinner no active cultures for me. . . The Wal-Mart was jumpin' at 9 last night. This is migrant farmer country, lots of small apartments filled with families. It's the land of Cesar Chavez, grape country. It's also over 100 degrees in the daytime, so folks come out at night. We found ourselves at Wal-Mart at about 8:30, picking up some things that we'd forgotten to pack, recognizing that we were the tallest people in the store. I'm just sayin'.
Anyway, the plan today is Yosemite, then on to Sacramento to see our fabulous Capital. Ahnold, most certainly, will be away on some juggernaut with the Kennedy family. So, a fair amount of mountain driving, today, crappy National Park concessionaire lunch fare, but probably better choices for dinner.

Thanks to those of you still checking in.
I've had a major computer meltdown. Combine that with a week-long road trip, 115 degree heat for another week after that, and then a faulty new motherboard, and you have one unhappy camper.
I've got some vacation blogs on a hard drive that I can't access at the moment, but they will appear, hopefully with photos, in a few days.
School's started, Emma's already missed a day due to sickness, it's cooled off dramatically back into the 80's (which actually feels glorious when night falls, and we're into the countdown to our next Lake Mead Trip. We're approaching what goes for normalcy around here.

Emma's Eight

Emma's eight, today. She was born on a Wednesday morning, just after midnight, yanked out of her Mother's womb foot-first, held up in the air for just a moment. The surgical assistants mumbled amongst themselves, pointed out the large gap between her toes to each other knowingly, and whisked her off to the NICU. A lot has happened, since then. Not so much to Emma, but to most of those who have met her.
It's difficult to describe, because it's difficult to describe. The adjectives don't do the truth justice; they tend to spin one off into a minefield of platitudes and prejudice. Saying that Emma has "special needs" implies inferiority. "Differently Abled" is condescending. It is appropriate to label her "Developmentally Delayed" ("retarded" for the 21st Century), but until when? 20? 30? I'm Developmentally Delayed, because I haven't gotten even a Master's Degree yet, let alone that PhD. that I'm oh so capable of? Or am I?
Everyone's expectations for Emma's are different. Unlike most of us, she has to make her own way in the seeming absence of discipline, peer pressure, and shame. The results are quite a mixed bag. Often, this can be refreshing; it can also range from annoying to dangerous. Life becomes a matter of relativity. Emma's finally becoming aware/annoyed with a wet Pull-up - this is a good thing, and a forward step in potty training. Emma's solution is to remove all of her clothing, along with the offending underwear. It's a blessing with it's own bottom-line.
She is capable of getting into the kitchen, and retrieving food from the refrigerator. She is capable of unlocking both of the 'regular' locks on the front door, and walking out of the house. She deftly exchanges the DVD's in the player in the Family Room. She likes to help, whether it's carrying in a bag of groceries, clearing the table, or rearranging the large glass vase filled with shiny rocks and dried plants on top of the piano. It's hard to discipline her when it feels like she really isn't going to ever grasp that what she's done is wrong; there's so many different kinds of trouble to get into, when your freedom is limited and your environment so full of opportunities. The answer can't be to sanitize her (and our) environment, but it's sure tempting when you're putting all of her clothes and bedding back into her drawers for the 4th time this week. She gets frustrated, but I can't really say that it's any more or less than I am on a daily basis. She gets her feelings hurt - see previous sentence. She forgives. She has compassion. She sees humor, she makes jokes. She gives. She loves. It’s not a matter of purity or innocence, it’s a matter of amplitude. She gets less freedom, because she has less responsibility. The rest of us get to make bigger mistakes, because we can usually pay for them.

We bought her a small, cheap, portable video player for her birthday. I cannot read the instruction manual for it. The type is too small, and it has been translated from an eastern tongue by someone who does not have a firm grasp on at least one of the languages:

"That player has six keys(Key) totally with a to turn a switch. . . No
matter what interface it is under, grow to press the MODE and PLAY/PAUSE key to can target the keyboard or relief to target a keyboard in the meantime."

I can almost understand the sentences above. How does Emma interpret what and how we say what we say to her? How do we all fall into the spectrum of truly understanding each other when we try to communicate? Thinking on these things, most things, is how I've changed over these eight years.

Emma is our daughter – of that there is no doubt. I see my Grandmother in her. She sweeps her hair back with the back of her hand in a most feminine way. She preens. She also likes to load up her fork with spaghetti and dangle it over her upturned maw like a bird eating worms. She likes to go out. She works a large table of diners just like her Grandfather. She likes to kick back in the afternoons and nap with Dad in his chair. She likes a good movie. She tinkers with technology. She often doesn't want to be bothered. She loves to dance.
One of my biggest questions is - if she hasn't already - if and when Emma will realize that she's significantly different than most of those around her. I almost hope that she never does - of course her Dad doesn't want his daughter to feel that sort of pain. My true hope is that if this happens, she'll be able to realize what most of us realize when we feel this way, that there are enough of those people around who love her for who she is, regardless of who she is. That’s the way I felt at the end of this day with my family and friends, celebrating Emma’s life with us. Happy Eighth Birthday, Girl!

The Fair was Good.

We had a good time at The Fair this year. After a few years of loading up on discount tickets for rides, running out, buying more, trying to calculate the cost - we've just given in the last couple of years and bought the one-price, all you can ride wristbands. They and the cost of admission went up a good chunk, this year. The good news is that we've learned to pick a weekday, and this year the planets aligned to bring us quite good fortune: Thursday was wristband day, Steve and Rita could meet us, and Steve White was playing!

Emma loves roller coasters. She has proven to be pretty fearless. I took her with me on the big bumper cars. She started to get upset with the first collision, but was giggling by the end of the ride, figuring out that it was supposed to be that way. Sam had the pleasure of his buddy Ryan's company, they did a pretty good job of tolerating the rest of us. The second ride, the teacups, I obliged Sam by nearly making him sick, as requested. Emma oohed and aahed her way through the rides, taking on some of the bigger-kid roller coasters this time.

This was Steve White's 18th appearance at the Fair. It's a venue that we can attend, kids and all, and it's usually as it was, this year, in the early evening when sitting down is heavenly - to watch and hear him play, divine. He is truly an artist who's combined technical skill with 'a soul for sound' to make music that's unique. While I hope he becomes as rich and famous as he ever wants to be, it has been one of the bright spots in my life to "discover" him, share his music with my friends, and exchange an occasional email with the guy.

Spending time with Steve, Rita, and Corrinna C. is always great, of course. We got in a few rides, after that, loaded up the kids with junk and ice cream, had some fried stuff, our own selves, and made it back home with no disasters or wardrobe malfunctions. The kids were good, the breeze off the ocean was steady, and we only got sunburned in a few places. Overall, a very satisfying day.

We're #1!

I’m here to report that the United States of America is leading the way in cost-effectiveness when it comes to the diagnosis and abortion of children with Down Syndrome.
Here is a link to a 2000 study by the Division of Maternal-Fetal Medicine, the Center for Perinatal Health Initiatives, and the Division of Clinical Genetics, Department of Obstetrics, Gynecology and Reproductive Sciences, University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School/Saint Peter’s University Hospital, New Brunswick, New Jersey; and the Department of Pediatric Dentistry, University of Connecticut Health Center, Farmington, Connecticut. There was no easier way to say that, sorry.
http://www.greenjournal.org/cgi/content/full/95/4/577

I don’t expect you to read the entire thing, unless you don’t trust my ability to interpret it for you. I just want to focus on some highlights, some things that I try, like most of us, to ignore as I go through my own daily trials and tribulations. The most important message of this article is the study’s projection of societal cost-savings by using a more comprehensive method of diagnosis, up-front as it were, to screen a greater percentage of babies with Down Syndrome. I take you now to the flowcharts embedded in the article. The bottom of the chart, for either the US or UK is the kick in the stomach. In both countries, when genetically counseled when other indicators warrant it, 70% of pregnant women choose to have an amniocentesis, and 90% of them with DS children abort them. It may be selfish for me to say, but I don’t think that (beyond one’s feelings about abortion) those of you without a child with DS can fully appreciate the range of emotions that this evokes. We were participants in this process of genetic screening, and we were part of the 30% who did not choose an amnio.
For me, reading this article puts me back into the middle of those days, a laundry list of what would I have done if I know what I know now, am I really a person of character or a complete idiot? - you know, things like that. I do know that part of our decision was a function of denial. I do know that we were pressed by several different entities to have the amnio; their intent, particularly understanding this statistic now, was very clear. I do know that we had some heart-rending (at least it seemed so then, looking back now not so much) discussions about what to do, which of course got to the heart of who we are. I will always cherish the things that we discussed; Victoria is an amazing woman of insight, character, and integrity that transcends that of anyone that I have ever met, and I’ve met some spiritual giants. For us, it came down to a matter of avoiding a procedure with risk that would achieve a result that ultimately would not change the outcome. I remember, after we had turned down the amnio, conducted a “Level II” ultrasound where the Doctor’s final words were (and yes, we were hanging on every word) “I think your baby is going to be just fine”, the subject was never brought up again by our OB Doc. We had essentially refused the course recommended to us. “They” were done.
Lodged within this cost-analysis is this paragraph:

"The following cost assumptions were made using American standards: ultrasound examination $200, maternal serum screening testing $70, genetic counseling session $100, CVS or amniocentesis package $1200 (including the ultrasound guidance before and during the procedure, the invasive procedure, and the laboratory fee for karyotype determination), first-trimester abortion $1000, second-trimester abortion $2000, and approximate lifetime cost of each live-born infant with Down syndrome $500,000. This lifetime cost of live-born infants with Down syndrome is an incremental cost (costs above and beyond those generally occurring for the average newborn). This cost includes direct (medical, developmental, and special education) as well as indirect costs (lost productivity including wages due to early death or disability), and it assumes replacement with a subsequent normal child for both strategies."

And they say you can’t put a price on Love. A price on the value of a Human life that, heretofore, hasn’t had a chance to contribute, to contribute in ways that clinicians can’t quantify. All Trisomy 21 people are not alike – just like you and me. How dare we deny well over half of these people the right and opportunity to live, love, and make the contribution that I see them make, all around the world, every day?
Apply the above formula to yourself, your friends, your family members who have had some sort of disabling physical or mental illness? Should we just sanction lethal injection for any of us that hits a half-mil in healthcare? Line ‘em up, we need to save this money for space travel and advancing the cause of Mankind.
I can get behind indoor plumbing. I’m glad we have Velcro. I’m all for Side-curtain airbags and self-parking cars. This is a narrowly-focused article, I know, with a point to be made. My problem is with the underlying assumptions and medical culture that, to me, goes over the line demarking diversity from disease. We - you, me - continue to deny the implications of the pandora’s box we’ve already popped the lid on.
Driving home, yesterday, I listened to the Director of “Evan Almighty” describing their efforts to be a “zero emissions” movie, from recycling to the purchasing of ‘carbon credits’ – paying for trees to be planted, somewhere, to offset the pollution that the making of the movie created. How about some abortion ‘life credits’ for lives taken selfishly, for those conscripts on the front lines of science who have no voice, no choice in determining their future?
After calming down, a little, I do want to note that this paper is seven years old. I hope that it is not aging well, and that there are other voices that are stronger now pointing out the benefits of genetic and social diversity that ‘offset’ these costs to us as a species. In a world of Humvees, pet insurance, and Paris Hilton, it doesn’t seem to be too much to ask.

Mr. Excitement is Gone

I miss Tommy Newsom.

You think the truth hurts. . .

I seem to be swirling in a sea of lies. Today is really no different than yesterday.
My gaming clan, The Old Farts, really only has one solid rule. You have to be over 30 years old to join. We run public game servers, all that play by our gaming rules are welcome. Sam even gets to wear =yf= (young fart) "tags" on his in-game name (=yf= pezboy). A member let it be known (and subsequently became a non-member) that he was under 30, and had just been "too impatient" to wait. Now, I realize that this has all of the gravity of a plastic shopping bag at Fisherman's Wharf, but I'm just getting warmed up. Hoohaw.

It appears that we have a pathological liar on a support forum that I help to moderate. This person, apparently, has taken many of us on a ride. This community has some people that truly care, and we often try to meet up, regionally, to both get acquainted as well as, sometimes, to offer real emotional and tangible support. For many, the emotional investment can be significant. Those who have invested time and attention to this person, who is obviously deeply troubled, are pretty angry about it. When you're part of a community that exists to support each other, do you then shun someone that obviously needs support, just not the kind you're expecting to give? It's quite a dilemma.

Thursday, after mowing the lawn, I plopped down in front of the TV for a break. Scanning channels, I happened upon the brother of Pat Tillman reading a statement to a Congressional committee, followed by Jessica Lynch. I am not bringing this up to discuss what is often misinformation from the field; what these and other families have had to endure is criminal, and ongoing, and, frankly, completely negates the reasoning that places us in Iraq in the first place.
As we would hopefully have learned, needing only one example (not the daily reminders that occur in Bagdhad), there are reasons why citizens choose to blow up their fellow citizens. Certainly a lack of telling the truth is a fundamental one, at least in a democratic society. Are there really more brass in Washington that are like Col. Jessep in "A Few Good Men" than we'd like to believe? We can't handle the truth? The truth that soldiers get killed by friendly fire, even famous ones? That the fog of war somehow entitles one's government to market your death or injuries to suit their purposes? Shame on us all.

We have network news anchors who read copy that places them into the news itself, with false copy written by producers. I live in a city run for so long via hidden agenda and obfuscation, that (among a complete budget meltdown) we now have a building two stories too tall, too near a local runway, approved by a planning department but not the FAA. One local pundit has proposed that this may all have been done on purpose so that the FAA would decertify the airport, opening up the land to development interests (read politicians in pockets, please). Who do you believe? Where does the truth lie? (That's an interesting juxtaposition of words, isn't it?)

I'm really glad that we aren't involved in Special Olympics. Seems that the local leaders have violated policy, somehow, in March. There has still been no explanation given to the more than thousand volunteers as to what may have been the reason for the complete shutdown of the program. These dedicated people are now forming their own organiazation, and moving on. If this is ever reconciled, it will take generations to repair the broken relationships. This isn't lying, it's simply not telling the truth, which is so much more prevalent (and insideous) in our society.

The dumber we become, the more we attempt to control each other via external means. There is proposed state legislation that would levy a $500 fine upon one, should their domestic cat have kittens. We're CC&R'ing ourselves into neighborhoods that aren't neighborly. There are persons operating under the cloak of Christianity yelling epithets at soldiers' funerals. And we watch American Idol as our Attorney General tries to decide how much of the truth he's going to tell. Not only that, you may soon eat a chocolate bar without any chocolate in it.
Other than that, things are just peachy.

A really nice thing happened on the way to the Forum

So, in my nearly a year in the =OF= Old Farts Clan, I have, naturally, applied myself to their forums. I even recently received an annual OFSCAR award for "Most Fun to read Forum Poster."

There is a loosely recognized contingent of us "forum spammers." We spam often, with nonsensical stuff. I tend to exhibit rants and poetry, I can only imagine your surprise. These forums are divided into several sections - we talk about game rules, rule breakers, new members are joining, we tell jokes, we talk about our operations, world events, etc. etc. . . . it's a community. In this year, I have only had occasion twice to make an issue (via private messaging, not public posting) of the use of the ever-popular "R" word. I just let the majority of it slide, because I've reached a point of decision - after 7+ years - that not all windmills are worth tilting toward. If someone has become an online friend, then it's a chance for us to get to know each other better, and, most often, not always, change an attitude.
Recently, for no real reason other than to stir things up, the forum admin has added the word SPAM to the list of words that are automatically filtered out, leaving symbols in their place. This, of course, has only fueled creativity in bypassing said filter. Farting around, as it were. A few days ago, I'm thinking to myself(which happens more often than it should) in my own passive-aggressive-sarcastic way, why not ask them to filter out the words 'retard' and 'retarded'? A little backhanded guilt-tripping, use the silliness of
banning a harmless word to get my little agenda done. No response from the admin.
I've achieved a certain level of credibility with a couple of the level fours (Marvin is lowly level two in clan machine), the group of 15 or so that really make the rules. It wouldn't be an organization without some, yes? I thought some more, and picked one. I told him about Emma, my activities on the forums regarding these words, and asked him if he thought it would be a good idea. His response absolutely floored me.

He has an aunt and a cousin with T21, he thought it was a fine idea, and he'd taken care of it.

I've been positively impressed from day one by the core people in this community in many ways, this just re-affirmed it. I could easily have been pooh-poohed by policy, condescention,
or apathy. I wasn't just accommodated, I was understood. In the world I live in, it is the difference between night and day.
Another moment, another tiny victory for a cause I signed up for inadvertently by not reading all the disclaimers on the back of the "So You Want to be A Parent?" brochure. A relationship strengthened by the sharing of common experience.

A good thing.

The IEP 2007

Back in October, we became aware that Emma's current arrangement in school, in a regular 2nd grade class with an aide (a wonderful woman who's been her aide since Kindergarten), wasn't working very well. Emma actually scores near 'normal' (I can't just let that word be 'normal', now, can I?) for social skills, for someone who can barely talk and knows about 15 signs. She has begun to 'self-stim' - she does this puppet thing with her hands, twists her hair, etc. - when the subject matter is beyond her. She's been reacting poorly to being pulled out of class (away from a social setting, duh) for therapies. Her music therapy (another subject entirely) was too elementary for her classmates to share, so that was a bust. So Vicky began asking about alternatives. We were given one - basically this is where you can go that we will bus her - and so we both went to visit, a month or two ago. It was horrible, in that these were very disabled kids, unable to, among other things, even be sociable with each other.Well, after rejecting that, and waiting, and waiting some more, Vicky found out that there is at least one other level of instruction, was invited to check it out (on the same morning her IEP was scheduled), and gosh golly if it doesn't look very good. Looks great! Wish we'd have been told this IN OCTOBER. So, Emma's IEP was today. The IEP, where various therapists detail the things you already know about your child, that she still hasn't chosen a "handed-ness" (which they think is very important, I know she's just going to do whatever she pleases, lol), that she can only hop a couple of times before she loses her balance, and that she just zones out and quits when she's overwhelmed. I spent a great deal of the time thinking to myself, "I'm sure glad there's no review board like this for my behavior." She's making slow progress, everybody thinks
she's "smarter" than she can communicate, and short on answers on how to work on that. And they are all recommending this "Pace" level that we never knew existed until this week. I knew it had to exist, you know, special ed between the two ends of the spectrum, put your own names on it. . . Don't misunderstand me, there's a really good team at her school (with the exception of the speech therapist, go figure). I have been and continue to be grateful for their committment and what they have done. What is very distressing is that no one has appeared to be capable of recognizing and directing us toward what is best for Emma - Vicky's had to do that all on her own.The best part of today was that there was a woman from the District (it's a huge school district, 8th largest in US) who knows what's what and who's who. She kept advising the school coordinator person (Peaches, can you believe naming someone that?) on wording for the forms, and was extremely helpful about finding where to go and what to do next.Two hours later, my stomach growling embarrassingly in the midst of a roomful of people, it looks like Emma's going to go to the class Vicky saw this morning, probably in 2-3 weeks after some more rigamarole.
Our experience, overall, has been nudging people with good intentions into doing what they already know they should, but for some reason don't fully commit - if that makes any sense.There's going to be some transition here, but we really hope that it's a bit of a kick in Emma's pants to tune in rather than tune out.
***
Emma's first day at her new school, Vicky goes with her to help the transition. As they're happily leaving the school, a woman approaches her, introduces herself as a special ed teacher, and pronounces that the principal has decided that Emma should be in her class, at the same school, not the one that Vicky was shown and has selected. This, of course, not only raises questions (I don't think I need to state them here), but creates a whole new anxiety about what tomorrow's going to be like. The reality is that it's the right decision, but couldn't it have been made before putting Emma through another round of introductions?
***
It's been a few weeks, and we seem to have ironed out all of the changes, like the school bus arriving a half and hour earlier than we were told it would. Emma seems to be doing alright with the changes, she's actually already demonstrated some behaviors that mimic the more appropriate education she's getting now. And that makes it worth it.

Sick and Tired of being sick and tired

Thanks for checking in, still.
Samuel came down with some sort of viral infection, Super Bowl Sunday. Yes, February 8th. It was the beginning of one, two, or all four of us taking ill until about the middle of last week. It wasn't the same thing, except for one lost weekend when all of us were crawling around and Vicky finally managed to get out for supplies.
So, just to say that I have a few rants saved up, they're on their way.

Jury Duty Ramblings

It’s always something.
I am, in addition to being a fairly good citizen, one of those warm bodies who actually shows up for jury duty. I live on the eastern edge of the city of San Diego. As such, I’ve learned that it’s possible for me to serve my county court service at the El Cajon courthouse, 10 minutes away, free parking, etc. – much more suited for the likes of me than the “downtown experience.” This time, I received my summons, and didn’t give it much thought – I’d just fall into my accustomed routine.
A couple of days ago, I decided to confirm just when I needed to place my warm body into the jury room, and discovered that this was supplemental jury duty, and that I was to call after 5 p.m., and not before, the night before, to find out whether or not I was to serve. I performed this task flawlessly, even following the automated voice prompting me to press 3 to change the location of my service. Please entertain an empathetic moment for me now, when the resulting recording informed me that a court clerk would be available to take my call after 10 a.m. the following morning, a full two hours and 15 minutes after I was supposed to arrive, downtown. Unfortunately, the difference between being a fairly good citizen and a great citizen is the ability to think like a bureaucrat, not like a consumer. I am a good American, so the consumer-think tends to take precedence. I am not ashamed of this in any way, shape, or form. It just collides with my sensibilities whenever I have to deal with government entities.
So, here I sit, downtown, having made my way to my $10 parking space, a mile away, gone through the County Courthouse scanner to find that the jury room is actually in the building next door now, allowing me to stand in another line to empty my pockets again. I did pare down my backpack to the essentials, and, unlike air travel, did not have to remove my shoes twice, already. I am actually quite grateful for the sense of security.
I have not been downtown in over a year, my last foray was a baseball game. We used to come down here a lot, before the children came. The logistics that once made it an adventure morphs into something different when one has two small children. To be alone, downtown, in the middle of the day, then, is quite unusual for me; a mixed visceral bag of playing hooky and civic pride, fear and curiosity about lifestyles that are not like my own. I resist the urge to look up at the tall buildings like a country bumpkin, but I'm feeling kinda bumpkinesque, this morning.
The speech by Judge Gill, thanking us for serving, is usually the highlight of the morning for me. He goes out of his way to not be condescending, which has the opposite effect on the “common sense” that he praises us for, just a few too many times. I realize that he lives much of his life in a different world than mine; that there are commonalities is the basis of why we are both in the same room, today. The legal system is a bizarre mixture of well-educated people dealing with the missteps of those lacking, well, a lot of different things.
They have announced that we are primarily here for the purposes of filling a four-week trial. Bingo! – my chances of getting out of here by lunchtime have just improved exponentially. As much as I’d like to, I’m prohibited by economics and my employers’ policies from fulfilling said obligation.
I was thinking, just yesterday, about the US of A. Our principles, set down by wealthy, slave-owning land speculators, have probably been stretched (and continue to be), beyond their vision of "freedom" and "equality". I think they believed what they said, I’m kinda shaky on whether or not they meant it for every-every one. Part of what makes me proud to be an American is this struggle that defines us as much as it often threatens to make us self-destruct. Take jury duty, for example. Current methods dictate that we call 200 people to fill a pool of 12-15. The process dilutes us all – at least my sense of importance in the grand scheme of things, inconveniences more than it has to, but does its’ best to provide an ambitious goal. Would I want my transgressions and punishment decided by the elite of San Diego? Not really. I’d rather not have my affairs judged by anyone, actually; I have seen a jury in action, and I think that they serve us well, as judge Gill said, "most of the time." That means not agreeing, but accepting. Pick your favorite example, and OJ don’t count - that’s too easy - no matter what your opinion is.
I know this is rambling, but hey, I’m on jury duty.
(Note: 11:10 – court cancels us all home without calling anyone. Thank you for your service.)
A waste of time? Kinda, but not really. In America, sometimes the process is the thing.

Amazing Grace

We’re not so overtly religious at my house. We do have some things that we do religiously; one of them is having dinner together. This includes saying “grace”. Lately, Emma has been getting agitated when we do this, so one day I said, “OK, Emma do you want to pray for dinner?” She did. And she did. And she does now - not every night, but some.
Now, Emma isn’t really capable of speech, yet. Most of what we understand from her is either paired with signs or the context of what she wants. We can’t really say that she can’t talk; she talks a lot, conversations with her dolls and such. “Apple” is more like “oople.” It is a particular frustration for me when she gets my attention, and delivers a couple of sentences to me that consist of no comprehensible words whatsoever, at least not by me. How frustrating it must be for her.
So she prays for dinner. And signs, “Amen.” Sure, it’s cute, but, like most things, it gets me to thinking. Perhaps you will, too.
What we know.
How we listen.
What we understand.
What we teach.
What God hears that we can’t know or understand?
What difference does it make?
Now, I know that this story could apply to any toddler. Your answers and ruminations on the above statements reflect who you are. Emma is a 7 year old, with Trisomy21. Does she know - can she know that there is a God that made her, or at the very least created the context that made her? That this God loves her and wants a relationship with her? Does He? I’m not sure if she’s really gotten much of a grasp on “right” and “wrong”, yet. Is she responsible for “sin” (should that be a capital “S”)? Is she “covered” - under some sort of divine insurance policy – a ‘gimme’, a “mulligan’? Are we all being graded on points, or on a curve?
Now, I’ve been exaggerating to pique your thinking. I know the theology. I have written about, and continue to think that there are aspects of my daughter’s consciousness and spirituality that transcend my own. She may very well have a concept of God already. She may talk to Him more than I do. What does she know of love? She’s demonstrated giving and compassion. Her kisses are sloppy, wet and golden. She loves me, 'cause I cuddle her and change her and try to teach her right from wrong. She is willful, stubborn, and often seeks her own way. She is more like me than she is not. Does God see her any differently than He sees me, at all?
What’s my point? I don’t know if I have one. I’m trying to communicate what it’s like to live at my house, with someone who exists on a different plane. I’m sure that there are similar experiences available to all of you, whether it’s dealing with an aging parent, or living with serious illness . . . there is no shortage of opportunity, and I claim no exclusive rights to the truth. It is in these situations, and moments, however, that bring focus to our thoughts about what’s really important. What love is.
So, if you find yourself at our house for dinner, Emma may say the blessing. I have to have faith that God hears her, understands exactly what she’s saying, and honoring her for recognizing His place at our table. It is the grace that He’s promised all of us.

Sometimes, opportunities arise, and one seizes them, and achieves the intended result. This is about one such time.Sam and I were invited to join what is a recurring trip to the desert to shoot guns. I have discharged one rifle, on one occasion, when I was 12 or so, probably without my parents’ prior permission. I was , I think, naturally concerned about taking a nearly 10 year-old boy to do this. Assured (with photos) that this was not the equivalent of giving him heroin and sending him into a life of crime, we agreed to go. It was only going to be one night, and it was a chance to see some friends that I hadn’t seen in a while. It was a chance to use our camping gear. To see the stars. All that stuff. And something else that I’ll get to in a bit.

We arrived just before dusk, in a perfect desert setting for discharging firearms – spot to camp, and a nice bluff about a quarter-mile away to catch the bullets. Greetings all around, and a glimpse of the hardware awaiting us. I got the tent up, beds out, mattresses inflated, etc. We both got to pop off some rounds with a .22 rifle and an M-1. Sam was already somewhat familiar with the M-1 from some PC video games – it was a particular thrill to make the association. A clear evening, chili dogs, a campfire, it was a nice, relaxing time. Chad proved that, just as the instructions predict, Jiffy-Pop cannot be popped on a campfire. Brad burned some strips of Magnesium – white hot. You know, stupid stuff guys do in the middle of nowhere when there’s no Moms around. Mmkay? The photographers set up, and took pictures of us firing the big scary Semi-Automatic German rifle that went ”GerBoomen.” Soon, it was time to tuck in. Took a while to get to sleep with no electronics to lull us, but I’m told that I was snoring loud enough, soon enough.

One of the realities of middle-aged ‘male-dom’ is the requirement, shall we say (in this venue), to answer the call of nature sometime between bedtime and the dawn. It is not customary for us city folk to be outside, out in the open, moonlight the only source of illumination. It was magical and monochromatic, the desert under a clear sky and half-moon. I turned my flashlight on and off, mostly for a momentary sense of security and control, but it seemed a sort of insult to the fact that I could see just fine without it. I stood under the stars for a little while, pondering things like those who spent months under these stars heading across this desert, a long time ago. I wanted to wake Sam up, but I realized that, by the time I got him fully awake enough to try and explain the concept, and gain some appreciation from him, he’d probably be more annoyed than inspired. Some serendipities are not so easily shared.

Saturday was donuts and coffee (no one else drank coffee?), and then taking turns shooting one of the oh, 15 or so guns that were offered – pistols, Deer rifles; Sam even shot the 12-gauge shotgun once. Your humble author managed to shoot a couple of clay pigeons, himself. I learned that there is a purpose for those AOL and Earthlink CD’s, after all. Our host is a police officer, a training officer, and a rangemaster. Most of the ammunition had been collected for disposal; we were actually performing a public service, too.

I think we ran out of ammo at about the right time – I know that, although I’d had fun, had had enough of this kind of fun, by then. We picked up, said our thanks and goodbyes, and headed back over the mountains for home. I do so enjoy indoor plumbing. We’d unpacked, showered, and were pooped out in the Family Room watching TV, when Sam turned to me and said, “Well, I’ll never look at guns the same way, again.” That was the payoff I’d been hoping for, and I didn’t even have to ask for it. “How so?”, I asked. “They’re loud and they, they’re . . .” his voice trailed off. “Really destructive?” “Yeah.” There’d been a short discussion during the magnesium burning the night before, amidst the guy talk about how hot it had to be to burn, and how it’d burn through other metal and stuff - you know, the usual – including some remarks about how some military shells had magnesium in them so that, after they penetrated (no need to elaborate, is there?), they’d keep burning. Sam and I talked, just for a little while, about both the cruelty and necessity for these weapons – this time particularly in the context of why a policeman carries and would ever discharge a weapon.

This was my hidden agenda, and I was really pleased by the whole weekend – the way the guns were presented, the proper respect taught for these weapons and those who were responsible for them, and the subsequent damage and power they have demonstrated to my impressionable boy. I am grateful for the opportunity to have enabled these first impressions to be the right ones. I’m pretty confident that he won’t be someone who shoots up a school – of course, for reasons beyond just this – but it’s all part of it. He lives in a world that includes a lot of virtual, unreal representations of history, today, and the future. I really want him to be fully aware and engaged in the one he needs to be engaged in. I think this worked just the way I wanted it to.

I are a Service Tech

Things have changed. I am no longer spending 7 hours a day in a windowless room answering telephones, silencing alarms, and haunting online forums. I have been re-assigned into a division of my department called "Building Systems", as a "low-voltage" specialist. What this means is that I am doing many of the things that I was hired to do, and did, from 1986 to about 1991. In the last two weeks, I have installed content for a character generator (a PC that puts information into our Television distribution system, repaired some Nurse Call equipment, replaced a PA amplifier for overhead paging, and watched 2 contractors work. I am also learning (or re-learning, if you will) about the stuff in Building Systems that, while probably necessary, bore the living snot out of me. Things like taking meter readings (a rotating task that takes the average tech about 2-3 hours to accomplish, there are many meters spread all over the facility), testing the water for the boilers and adding the appropriate chemicals, and learning the intricacies of piping and valving and zzzzzzzz. I have an appreciation for these skills - every large building is a living, breathing, pulsing entity with it's own personality, and every good company has people like Mr. Scott or Geordy LaForge of Star Trek to love/hate/cajole it into peak performance. Scotty I kinna be. I do like troubleshooting, and have enjoyed getting my mind and hands into some simple repairs. The new tools are nice, too.
I refuse to accept, however, that this is where I'm supposed to be. Sorry.
I'm having to re-arrange my online existence, though, which is probably a good thing, but a bit consternating. It is nice not to have to get to work, and within 15 minutes feel the pressure when the Operator wants to take a break and leave me with the hospital phones first thing in the morning. Now it's the morning meeting, the meeting after the meeting, stroll down to the shop, open the toolbox, check the email, and start working on the next thing. The old workdays I remember.
I'm going to have to start carrying a notepad though, because I can't just pop up the blogger and riff off a rant. I've had some good (at least I think ) ideas come up only to fade when I try to recall them, later, lately.
I can now go to the bathroom without finding someone to relieve me whilst I relieve myself. The Building Operations Center was all about pressure, to me, and not just on my bladder. Not the kind that excites one into pro-active action or problem resolution. The one where procedures are written, and then interpreted and re-interpreted like The Book Of Revelation to a point where, when something serious occurs, functionaries like myself could have done better. No matter how well we did it. Having to know who's asking, as well as what they want. I don't miss it, but I do miss the time to write.

This place ain't doing me any good
I'm in the wrong town, I should be in Hollywood
Just for a second there I thought I saw something move
Gonna take dancing lessons do the jitterbug rag
Ain't no shortcuts, gonna dress in drag
Only a fool in here would think he's got anything to prove
Lot of water under the bridge, Lot of other stuff too
Don't get up gentlemen, I'm only passing through
People are crazy and times are strange
I'm locked in tight, I'm out of range
I used to care, but things have changed
- Bob Dylan, "Things Have Changed"