Yum

If you look at the links to the right, you'll see I'm a Good Eats fan.  I like the science that Alton embeds into his show.  In fact, I never really understood emulsions (yeah, I know, my AP Chem teacher would be very sad) until he explained them with his styrofoam balls and push-pins.

I have wanted him to cover pretzels for a long time.  I enjoy pretzels (especially Wetzel's with sour cream and onion (? or is it chives?) but most pretzels that you buy -- and especially frozen ones -- have an odd chlorine-y taste to them.

Tonight's Good Eats is all about pretzels.  Yay.

Eesh

You know, it's Disney for cripe's sake -- you'd think they'd want to take my money.  Please fix your software so that I can pay for our vacation.  Thank you.

Well...I Did It

So as some of you may know, we're going to Disney World later this summer.

I don't handle heat well, so I've been investigating options for cooling myself down.  The most promising (besides misting fans, which I already have) is evaporative cooling hats, which serve the dual purpose of keeping my very, very pale skin from burning.

(The last time I was at Disney World, I ended up with a second degree sunburn.  I have no desire to repeat that experience.)

Anyway, the best hats have wide brims (the better to protect your face and neck) but considering my sensory issues about my hair (I can't handle hair touching my ears...weird, I know, but true), I always wear my hair back in a ponytail.  Obviously, that won't work with an evaporative cooling hat.

So I took my butt down to Fantastic Sam's today and got my hair chopped off.  Cat -- it looks kinda like your Miss B.'s hair.  The bangs may need some tweaking; she cut them at an angle to hide my forehead despite my repeatedly saying that I've been wearing ponytails for 15+ years, so I'm used to my great big forehead showing.

Other than that, it feels...weird...but good.  I took Patrick along for moral support, but it was relatively painless.  And she even trimmed around my ears so the hair doesn't touch.  :-)

What Makes You You?

When Patrick was younger and I would mention that he had Down syndrome, often people would respond with "I'm sorry."  My grandmother once told me that she felt sorry for my mom, having to "care for a child like that."

Every once in a while, people would ask me if I would change the fact that he has Down syndrome if I could.

It's an interesting thought experiment.  It's the old nature-nurture thing.  How much of Patrick's personality is genetic?  How much is based on experiences he would not have had if he had not had Down syndrome?  If he had not played Mrs. Wishy-Washy in his speech therapist's play in elementary school, would he have played Dr. Frankenstein with equal aplomb?

But underneath the thought experiment are some pretty heavy-duty questions, not the least of which is: what right would I have to change -- to utterly, irrevocably alter -- everything about him?  His very DNA?  What right do I have to judge the quality of his life, and judge it lacking just because he doesn't read or do math as well as I do?  What right do I have to reshape him in a "better" image?

And what message would it send to him, if he found out it was being considered?  In a Deep Space Nine episode ("Dr. Bashir, I Presume?") it's revealed that a character had genetic resequencing because he was developmentally slower than his peers.  After the treatment, he is at the top of his class; but he lives his life feeling that the old "him" had died, feeling as though he was a great disappointment to his parents.

In the episode, of course, the sanitized Star Trek view of the universe prevails; while still upset with his parents, Julian does come to realize that his parents were -- if misguided -- acting out of love and concern for him.

Honestly, the answer I eventually arrived at was that if the option ever existed to remove Down syndrome from a person's makeup, then it should be the person's choice.  If Patrick wished, for instance, to have cosmetic surgery to alter the shape of his eyes or extend the length of his fingers, that would be his decision.  The same would be true of any hypothetical cure for Down syndrome.

Some may say that that's all well and good for Patrick: his life is well-rounded -- he has a girlfriend to whom he plans to propose, interests and enough literacy to read about them, and hobbies (including abstract photography).  But what if the same were offered to one of my students, E., who is significantly more challenged than Patrick?

E. has vision issues, may have kidney issues, has little reliable speech (she can imitate words in a low-stress environment and can make one or two requests; she's also learning to use this to request attention without pulling hair or pinching/scratching), requires extensive adult support throughout her school day.

But by and large, she's happy, as is Patrick.  She gets off the bus with a grin and a "wow!" or "I know" (which seems to be her current way to say "hi" or "please talk to me").  So who am I to judge the quality of her life?

I teach her to the best of my ability.  I provide ways for her to communicate; I search daily for ways to engage her and keep her learning.  I also make sure she understands that she's cared for and welcomed in our classroom -- something she hasn't had for years.

If she does indeed have kidney problems or other internal maladies, certainly those should be treated.  Her teeth need considerable work, and when she's been to the dentist, her outlook and ability to learn improve tremendously.

But going to the dentist and having her mouth not hurt does not make E. not have Down syndrome.

And thus I get to the real point.  Over on Kristina's blog, there was a fairly long discussion a few months ago that I just read today, partly a debate about the cause of autism and partly a heated debate about cures for autism and how they are perceived by some in the autistic community.

Many people who have autism are opposed to the idea of a cure for autism -- ultimately for the same reasons I spoke of above in regards to Patrick.  They feel that it would fundamentally change their experience of the world -- an experience that many people with autism do not feel needs changing.

Unfortunately, the entire debate seems to -- as many heated debates often do -- have boiled down to two extremes: the group that believes in a cure and characterizes anyone who does not as not wanting to do anything to educate or help children who have autism, and the group that believes in neurodiversity and views any talk of biomedical interventions and some other approaches to autism education as offensive in the extreme.

Add into this the question of the causation of autism -- thimerasol in vaccines, other heavy metal poisoning, genetics, other environmental or biological factors -- and you have one huge mess.

So here's my two cents.

If I had a child with autism, I would look carefully for any of the concerns that seem to occur with autism -- for instance, lactose intolerance.  If my child had stomach issues that required a gluten-free diet, and that diet helped them feel better, I would do it.

Would my child appear to have "recovered" from autism?

Well -- my child would probably be more comfortable and more able to devote mental energy away from "ow, my stomach hurts!" to other tasks.  But that just means I cured their stomach problems, not that I did anything for their autism.  The results might look similar because I might have freed up some more energy "packets" to use for social interaction, speech, or coping skills in order to avoid overstimulation or overload.

(I borrowed the "packets" description from a description of multiple sclerosis I once read that said that you started every day with a set number of energy packets that you had to expend throughout the day, and when they were gone -- boom, that was it.  If you used all your energy packets going to the grocery store, you might not have energy to cook, etc.)

Ultimately, I believe that there's a difference between curing autism and educating people with autism.  That education should include social skills, coping strategies, how to recognize and deal with overload/overstimulation, and other skills unique to the requirements of having autism.  To discuss and advocate education and amelioration of physical discomforts is not to advocate taking the autism out of someone any more than teaching Patrick to remember that his Down syndrome had caused him to have a dry mouth and large tongue, and that he, therefore, should never, ever eat without a liquid nearby.

What makes a person with autism the person that they are?  What could you safely remove without altering that person's personality -- the core of who they are?

There's no real good answer to that question -- we just don't understand enough about the human brain yet.

For that reason, I think that even if an external cause for autism were to be found, if a way to ameliorate it were to be found, it should be an individual decision -- just as it should be for people with Down syndrome.

Meanwhile, I think it does us all good to remember that a life can be full and interesting even if it's unusual.  The gentleman I referred to in my previous post who created a Star Trek home theater certainly seems unusual to me, but if that floats his boat, fine.  Writing fan fiction is viewed as strange by lots of people, but it floats my boat.

And if lining squares of blocks out on the floor floats your boat, who am I to judge that?

(And if this wasn't long enough or philosophical enough, just wait for my rant on the Ashley Treatment.)

Why? Just...Why?

As the article says, there are Trekkies, and then there are Trekkies.

Eight-Zero Fathoms, Aye Aye!

After crashing on Friday (after being ready to check out at 1:15! (a new record for me), thanks to the generous help of Patrick, Miss T., Miss J., Miss S. (who came to visit and still helped, even on her healing knee, bless her), and Miss A., I packed up for my birthday trip that started yesterday.

It was a simple trip, just a jaunt down to a Hilton Garden Inn on Harbor Blvd., about two or three blocks away from Disneyland.  The goal was to be able to get to DL to be on Main Street when they opened, so that we could go straight to Nemo.

Meanwhile, Saturday night, we went out for my birthday dinner.  Now, despite being within driving distance of one of the best Italian places ever, I had a real hankerin' for Olive Garden black tie mousse cake, so that's where we went.

And therein hangs a tale.  (Or, as Dharma once said on Dharma and Greg "therein squats the toad" just 'cause I'm random like that tonight.)

There is a large outdoor shopping mall in what is technically (I think) Irvine, off the Jamboree exit on the 5 South.  I was sure there was an Olive Garden there.

Well, there's a Buca di Beppo (which is delicious, but does not have black tie mousse cake), and Macaroni Grill (ditto).

Before we'd left the hotel, I had been playing with the new photo feature of Google Maps, and had seen there was one on Katella.  But after driving west on Katella quite a ways, we had to turn around and go the other way.  But, we finally found a (not very crowded) Olive Garden, and I ate a week's worth of calories that I did not need, but oh, it was yummy.

(And given that as I type this, there's an add for an iPhone, which has google maps functionality, I can't help but moan, in a nerdy-like way, I WANT AN IPHONE!)

So we went back to the hotel and went to bed for our adventures this morning.  I had new ear plugs (to avoid the almost-sleeping-in-the-bathroom disaster of a couple months ago) that worked very well, and I actually slept pretty well.

We left the hotel at about 10 after 7:00.  Got to the parking lot right around 20 after 7:00. 

 

Plenty of time.

Except that they apparently do things differently now.  They did not even let us into the parking building until 7:30.  By the time we got to the park, it was 10 after 8 and the line for Nemo was 3 hours long.

But I had my shuffle, bunches of podcasts to listen to, new sunscreen that actually wasn't gross to apply (thanks, Megan!), and comfy shoes, so we got in line while Patrick went to play.

Except that I either tweaked my back moving school stuff or it really did not like my bed the night before.  Plus, I had one of my Stomach Aches (capitalized on purpose, and if you've ever seen me have one, you know why), which makes this one area in my back just agonizing.

But by that point, we'd been in line 2 hours, and I wasn't about to give up then.

Patrick -- who wasn't going to ride -- came back for money to buy a drink as we were about 15 minutes out, and decided to ride with us.

I'm not sure it'd be worth 3 hours in line again, but I'd wait 1 1/2 or 2.  It was really, really good. 

The underwater projection was amazing, and nearly everything the main narrator on the subs said was a nod to the original subs.  Without spoiling it, I especially liked his comeback to the question about putting what they'd seen in the logs.

I took a video of it with my digital camera -- to make it fit, I had to do it at half-resolution, but I might upload it anyway.

Well, by the time we were done with that, we were all tuckered (my Stomach Aches leave me feeling like a dish rag, and Patrick had taken a page out of my book and hurt his ankle), so I bought myself a stuffed Dory that I'd been eyeing for some time, three chocolate covered strawberries, and headed on home, where I promptly crashed for a few hours.

My favorite part: unquestionably all the nods to the original subs.  In fact, I told just that to the DL cast member who was doing a survey as you got off the subs.

Patrick's favorite part: Monorail Red dressed up as a sub.

All in all, a fun day.

A Bittersweet Day

Today my three sixth graders "culminated" (we're not allowed to call it "graduating"), marking the end of my 4th year of teaching.

Starting my first year, I had to come up with a way to keep kids straight, mostly for copying purposes.  I had to be able to go over quickly who was in my class, and who got which homework.

So I've always separated them, first by grade level, and then alphabetically by last name.  So, this year, it was M., E., A., R., A., E., J., R.

It's been E., J., R. for three years.

This is the first group of kids I've had since the first day of their fourth grade year; I, in fact, had J. for summer school before her fourth grade year.

Looking back over the pictures I took at the all school picnic, and today, something really hit home.

This is the nicest group of kids I have ever had.  They are kind to each other, supportive of each other, and a cohesive group.

So while it's exciting to move E., J., and R. off to bigger and better things (after summer school)...part of me is mourning for the chemistry we had this year.  And part of me is just sad that there will be no more E., J., R.

Maybe more later, but I'm -- in Britspeak 'cause I was just reading about the  Harry Potter movie -- knackered.

Yawn

Well...it's late, and I'll pay for it in the morning, but our poetry book is officially ready to be copied for summer school!'

Of course, I am now singing "Hope Eyrie" (a gorgeous tribute to Apollo 11) in my head.

Nerd Heaven

*giggles*

http://www.ics.mq.edu.au/~msjj/index.html

Thank you, Mr. Wheaton, for another way to waste my time! ;-)

Out of the Mouths of Babes

So today, I was at A's house doing his home teaching.

I've been having an unusual number of headaches recently, and have been suspecting that it's time for a new prescription (I began to notice that I had to tilt my head a certain way to see clearly across the classroom; I have astigmatism and I think the lenses are ground in such a way that certain places are the proper shape to be clear, while the main area is not).

Anyhow, I'm at A's house giving him a break after testing him on progress towards all his IEP goals. He's doing a monster truck show for me and tries to tell me the name of one of his monster trucks.

Now, I can usually puzzle out what A is saying, despite numerous speech difficulties (I never remember whether he had a stroke as a baby or has CP but the result is the same), but I have to have some idea as to the context. Monster trucks? Not so much.

So he holds up the side of the truck so I can read the name.

It's a tiny blur.

I say, offhandedly, "Boy, do I need glasses. You're going to have to bring that closer."

He grins. "But you have glasses!" he says.

I Wasted Time, and Now Doth Time Waste Me

Via Kristina's blog, a nifty new way to stare aimlessly at the computer instead of working on summer school stuff.

Ahem.

That is, to glance at ocassionally as you are productively engaged in your work.

Title is from Shakespeare's Richard II; found on wikiquote, the quote version of wikipedia.

It's Over

Life, I suppose, is all about compromise. Nobody gets exactly what they want, but everybody gets something.

I compromised today to keep the peace with the administration who, after all, is in charge of me. I get that -- I do. Miss T. was happy. The middle school teacher was happy 'cause her life is not inconvenienced by providing curricular modifications or aide support for J to spend extra time in general ed beyond what her program provides. The OT and APE people were happy because she was moved to consult (a decision I actually supported, as her handwriting and sports skills, like everything else, improved around her peers after years of direct service doing not much).

I did put in a plug to get J in clubs at lunch time and after school extracurriculars.

I don't think mom was 100% happy; I wasn't 100% happy.

But it's over.

Mom signed, and if J. has another period like in 3rd grade where she lost lots of skills, no one can say I never warned them.

It's out of my hands. It'll be someone else's Drama.

Meanwhile, I just realized that I left the ice cream K. (a fourth grade teacher) was kind enough to bring back for me after she went out with the other 4th grade teacher and the science teacher, in the freezer at school. :-(

I have more thoughts, but I actually have to get some work done, and I feel a headache coming on. (Ignore this if you're leery of TMI.) I've had my monthly migraine twice in the last week, but the result of that has not happened yet. I wishy my hormones could decide which of my girls to sync up with -- I thought we were getting there a couple of months ago, but either one of the girls is getting irregular and I didn't notice, or one of the other girls is fixin' to start and confuse my poor reproductive system even more.

Anyone else ever wish that the "pregnancy substitutes" in Huxley's Brave New World actually existed?

So THAT's the Secret!

Hmm...let's examine this, shall we?

Last week, I sit down at 6:00 to write A's IEP. A is a new student this year but I know her fairly well and have a pretty good idea of the goals I want to write. 6 1/2 hours later, I am finally done after giving up and writing...a passable...goal to fill out that last darned box.

Tonight, I sit down at 7:30 to write J's IEP. Although I have known J for three years, I've been less involved in her schooling this year as she's only with me 30% of the day. I don't really have an idea of the goals I want to write. Meanwhile, as I type, I chat with Cat. 2 1/2 hours later, I am done.

The secret to good IEP writing is, apparently, have absolutely no gosh-darned clue what you're going to write before you write it.

Okay then.

One More

As in...one more IEP.

A disclaimer: I love my kiddos. I love the day-to-day aspects of teaching them. I love taking a book that most people think is beyond their reach -- War of the Worlds, say -- and find a way to make it accessible to them.  I have mostly positive interactions with parents.  I truly think I do the best I can to further each and every child's development, whether they come to me matching colors, not matching at all, or reading at a 2nd grade level.

That said, while I like to think I'm a fairly good writer, and have been told I'm a good IEP-writer -- and while I have only had two IEPs go dramatically badly -- I freak out before each and every one.

I know J.  I know what she can do.  I've seen how she's grown this year.  I've seen what being included 70% of the day has done for her.  I can delineate how she's grown -- how, while she could read and decode nearly at grade level, she could only comprehend at a pre-primer level and can now comprehend at a late first grade level.  I believe -- truly -- that full inclusion is the best placement for her...because for her to be alert and available for knowledge, she needs to be around her peers.

She's shown that this year.  I've had her since summer school before fourth grade.  She's going into seventh now.  For two years, I taught her nothing.  I tried every trick I could think of -- visual cues to help her learn what question words meant, manipulatives to shore up her number sense so she could fix mistakes in her rotely-learned math.

And she barely treaded water.  Her comprehension did not improve.  Her social skills did, marginally, but her ability to apply what she had learned did not.

Within a week of being 70% included this year, she was answering questions appropriately (though not always correctly); that is, if I asked "Who was White Fang's first owner?" she might have said Wheedon Scott, but at least it was a person.

Ditto math.

Ditto her handwriting, for crying out loud.

For whatever reason, being with her peers turned a light bulb on that I never even knew existed.

Except that the program specialist doesn't think so.

Which puts me in a very awkward position.

Meanwhile, I have to write and propose goals that would work equally in a special day class setting and a general education setting.

Wow

So, before I got my credential, I worked as a teacher's aide at CHIME Charter elementary school -- a school with full inclusion as its philosophy and model (with one exception: students that were deaf were given small group instruction in the mornings).

Well, one day, the student I supported wasn't there, so I was watching the rest of the kids at lunch. Several of the kids that were deaf joined the table where I was hanging out with some kindergartners, and one introduced himself.

Very, very rapidly.

Like...very, very, very rapidly. Warp 10. Fingers blurring into what I knew were letters, but God help me if I could follow them.

Now, I know some sign, but that was WAY too fast for me, and I haltingly told him so. Being an eight year old boy, and typical in every other way, he tried one more time and went about his day -- 'cause, really, who wants to chat with a teacher at lunch?

This little girl smiled when I asked her name (she was in kindergarten or first grade at the time) and slowly signed, very deliberately, signed L-E-A-H. Then she told me the other boy's name as well.

Fast forward to today -- in January, it'll have been (yikes!) five years since I worked there. A few months ago, my TiVo recorded a show called Signing Time as a recommendation and who should I see but Leah!

My TiVo also has various disability-specific wishlists, and it recorded a show called Profiles in Caring, about Leah and her family over night. (Streaming video here.)

Leah's little sister, who was...oh, I'd say maybe 2 1/2 the last I saw her...is a big girl, talking away as Leah and her sister (Lucy) arm wrestle. Leah's mom discreetly asks Leah to let Lucy (who has cerebral palsy as well as spina bifida) win, and Leah does.

Leah looks to be about 9 or 10, I'd say, but she's clearly the same thoughtful, nice little girl I knew way back when.

So...go buy Signing Time for a once-upon-a-time buddy of mine. :-)

Accessible Subs

When the "Submarine Voyage" ride reopens Monday at Disneyland, it will have a new story line, shiny new coral reefs and something not envisioned when it debuted in 1959—an alternate experience for disabled visitors.

The "Imagineers" at The Walt Disney Co. couldn't retrofit the hatches and spiral staircases of the original 52-foot submarines to accommodate wheelchairs.

So they did the next best thing. The undersea voyage has been photographed with state-of-the-art equipment, and the high-definition images will be displayed on a 61-inch plasma screen in a theater designed to resemble an observation outpost.

The viewing site is also intended to accommodate people who are claustrophobic.

I'm of two feelings about this.

The first is -- well, that's cool. It's nice that they're thinking not only of their guests with physical disabilities but also those who have difficulties in enclosed (or, in Patrick's case, dark) spaces. It seems like a reasonable solution to a difficult problem.

The second, though, is this: for all the money they spent on the subs -- from the first test drainings of the submarine lagoon, the (rumored) retrofits of the Matterhorn that said draining required, to the retrofits of the subs (which, apparently, was extensive, and included adding seats and switching the motors from diesel to electric), to the new underwater painting techniques -- for all of that money, they couldn't have enlarged one hatch on, say, two subs, an installed a telescoping platform of some type? Perhaps the same type that the Jungle Cruise now has?

Over the years, I've watched as Disneyland has gradually become more accessible -- and, perhaps as a result, or perhaps just because of the increasing presence of people with disabilities out in the world, or, perhaps, just because I've grown more aware of what I was seeing, I also saw an increasing presence of people with disabilities.

Where once it was notable if I saw one other person in the park with Down syndrome, it's now notable if I don't.

The trains were given large back compartments that can be accessed from all stations except Main Street. It's a Small World now has a boat with a platform that can be raised or lowered so that a person does not have to transfer out of their wheelchair. (Patrick got to ride on that once.) Space Mountain now has this nifty new loading feature where they can move a whole train to the side so that someone who moves slowly or has to transfer out of a wheelchair can take all the time they need.

In my experience, too, the cast members are uniformly trained to be respectful without being overly helpful. If Patrick is first in line at an attraction, they ask him how many people are in the party. (If we're in a particularly noisy spot, I usually gesture myself above his head, so he doesn't see.) When he goes out and about in the park on his own, he's never reported being questioned or treated as though he was lost (though a cast member did talk him through a scary experience with the fireworks once when he was stuck waiting to get back to us).

While preparing for Disney World, I picked up this book which talks about all sorts of special needs, including intellectual disabilities, visual impairments, hearing impairments, and so forth.

The article continues:

"The law doesn't apply to everything," said Dennis Speigel, president of International Theme Park Services Inc., a global consulting firm.

"If something is too challenging, then it just can't be done and they don't have to allow a physically or mentally challenged person on the ride," Speigel said.

Disney declined to disclose the cost of the renovations.

But here's my problem with that.

Speaking solely as someone without an engineering degree...it could have been done. We've all seen those telescoping platforms that extend up (cherry pickers?)...I don't buy that they couldn't have taken, say, two subs, and have installed that.

But maybe I'm being unreasonable.

And...since when does claustrophobia count as "mentally challenged"?!

Patrick's issues with the dark have very little to do with having Down syndrome and a whole lot to do with living through the Northridge earthquake at the age of six and forever associating the deep dark that ascended as all the power went out as going with earthquakes.

To be honest, if the subs truly went underwater, I might have issues with them -- I tend to overthink things and dislike driving through tunnels (driving through a gorgeous mountainous area on the way to Denver was sheer torture) or riding subways such as BART underwater.

Finally:

"It's such a phenomenal world we've built down there, and at the same time it's such a beloved attraction that it's really not an option for us" to exclude any guests, said Kathy Mangum, a vice president at Walt Disney Imagineering.

Okay, I like the philosophy, but it shouldn't be an option to exclude guests if it wasn't a beloved attraction.

The whole idea of Disneyland, as Walt Disney says, was to provide an inclusive place. He was tired of taking kids to the merry-go-round and not being able to ride with them. He was tired of being the guy on the bench watching everyone else have fun because he couldn't ride the merry-go-round. So he built a place where parents and children could have fun together.

If the Disney company truly wants to live up to that legacy, exclusion shouldn't be an option, no matter how beautiful or how beloved the attraction or experience is.

SG-1 C/S 'Shipper Squee

Before I get to my more serious post, I just have to say something. Tiny spoiler.

Cam -- seriously -- blink. Yes, Sam is wearing civilian clothes. Yes, she said they went to Victoria's Secret. But, really...blink. ;-)

(Oh -- and I have to wonder if there were any fun outtakes where he drooled over the wrong person, given that Vala was also in civvies -- and sporting a clearly salon-gotten tan (which, Claudia, doesn't flatter you.))

Revisionist History

Archaeologists unearthing the remains of George Washington's presidential home have discovered a hidden passageway used by his nine slaves, raising questions about whether the ruins should be incorporated into a new exhibit at the site.

Whether the ruins should be incorporated?

Pardon me while the amateur historian in me has a small meltdown.

I have serious problems with the notion that we should ignore that George Washington had slaves.

He had slaves. At the time, many wealthy people did.

And -- get this -- the government condoned it!

The freaking Continental Congress -- our revered Founding Fathers -- could only agree to the constitution when they decided that a slave counted as three fifths of a person.

I understand the fact that people want to get all nostalgic and patriotic. I've seen the real Liberty Bell; it's an amazing feeling to be next to something with such history.

But the fact of the matter is, history is rarely uncomplicated, black-and-white, or pretty.

Trying to ignore the uncomfortable parts just aren't right.

And, honestly, to me, this seems a little...hypocritical.

If archaeologists had found, say, a previously-unknown tunnel leading to the Reichstag dating from World War II used by, say, Jewish slave labor, you can bet that it would be viewed as an important historical site -- whether it made the German people uncomfortable or not.

Why not use the passage as a way to encourage visitors to ponder the true nature of early American society; to ponder the fact that they chafed under external control (and wanted to be free) from Britain; to wonder how people who championed individual rights could hold slaves.

To ponder the inherent complications and contradictions that are American life?

Apologies if this is less than coherent (see above re: small meltdown).

On a Semi-Related Note

Okay, related only in that Patrick is the real Disney fanatic of the family....

I used to love the submarines. I have very visceral sensory memories of running my hands along the metal railing in the queue line, along with the distinctive smell of chlorine and metal. I remember what it was like to descend those spiral stairs into the submarine, which was always this big pit of darkness if you rode in the day and your eyes weren't dark-adapted. I remember the metal smell (different in some indescribable way from the metal queue rails) in the submarine itself, and the way my chin never quite reached the porthole in a comfortable way to see out. I remember the brush of air (which, of course, also smelled a bit metallic) on my face from the little a/c vent in each porthole (this was one reason it was a good daytime attraction).

I remember the voiceover saying, "Dive! Dive! Dive!" I remember hitting the bubbles that I saw in the lagoon suddenly making you feel like you really were diving deep between the ocean. I remember the narration speaking of undersea volcanoes and the voice saying, "Ease her back up to 80 fathoms."

My memories of Disneyland in the late 80s and early 90s are very much like that -- fragmentary and eclectic. Partly I think that was because it was before we had annual passes and only went once or twice a year. There are some snatches of words ("To go, press your foot down on the pedal. To stop, take your foot off the pedal. For your own safety, and the safety of other drivers, please do not bump the car in front of you or stop your car in the middle of the track" is courtesy of God-knows-how-many-hours of standing in line for Autopia with Patrick), some of sights (the atom mobiles going into the giant telescope and looking at the models coming out small and even though I knew they were models, it never stopped me from feeling shrunken myself) -- though not a lot of those, surprisingly -- and even some smells (Autopia exhaust, for one thing, but also the strange air conditioning smell in the Tron room on the PeopleMover) and touches (the handrail of the stairs up to the rockets under my mittens; it was always the last thing we did and was often cold).

Many of those attractions are still there: Autopia (though in a new spot), Pirates, Haunted House, Patrick's beloved monorail.

But many are gone, too (and many of those, victims of a several attempts at updating Tomorrowland): America Sings, Adventure Through Inner Space (what I called the Shrinking Machine), the Circle Vision movies, the Skyway (a.k.a. the Sky Ride, where I unknowingly saw the first person I'd ever met who had cerebral palsy, my beloved People Mover, the Motor Boat cruise.

For years, the sub lagoon sat there empty, waiting for something to be done with it. To my admittedly nostalgic eyes, it looked lonely -- as lonely as the empty People Mover track still waiting for its guests to return.

Will the rethemed Finding Nemo subs be as edutaining as its namesake was?



To be honest, I don't care. I was there a few weeks ago taking pictures, and managed to catch a shot with a submarine gliding around the lagoon and a monorail heading into Tomorrowland on top of it.

And for a moment, even with the seagulls from Finding Nemo hollering "Mine! Mine! Mine!" at me, I was transported back in time.

In a few months, the monorails will be receiving their new bodies; rumors are they will look more like the classic monorails.

But for that instant, I was 12 or 13 years old, watching the monorail bring people in from the Disneyland Hotel (which used to be across the street, not across Downtown Disney).

The first Annual Pass preview day was today, and of course one of the lucky folks to win posted a video of the ride. I've clicked on it twice and can't bring myself to watch it...at least the first time, I want to try to immerse myeslf in that magic again, and really believe that I'm diving...diving...diving.

A Gentle I-Told-You-So

(But first, please send good wishes to a pregnant friend of mine, whose blood work -- which we hope was a fluke -- revealed a potential problem for which she has to have an ultrasound tomorrow.)

That said....

Patrick has always been lucky to be in good health. He was not born with any of the common complications related to Down syndrome; his heart was healthy, his bowel was not obstructed, etc. He did have a weak sucking reflex and was not able to be breast fed, but he required no surgery or any extraordinary intervention other than an IV (in his head!). His hearing was (and is) fine; he was only mildly delayed in gross motor activities.

He has poor eyesight, but so do I, so did our dad, so does our mom, so did all of my grandparents and at least one great-grandmother.

In other words, that's genetic, but it ain't that extra chromosome.

About three years ago, he started having odd 'attacks.' We'd be somewhere he really enjoys when he'd start feeling tired, lightheaded, etc. His forehead would break out in sweat but his arms would be ice cold. They started first in summer, so we put it down to dehydration, because his breath had a dehydration smell that I will never forget (see above, re: couldn't nurse). Food and/or drink would help, usually.

At the same time, he started sleeping a lot, and started to have trouble sleeping lying down due to snoring/congestion and what sounds an awful lot like sleep apnea. His skin got so dry that even with daily applications of cornhusker's lotion, his knuckles and wrists have a permanently dirty appearance due to the cracked/dry skin that attracts dust.

He also started getting constipated quite regularly. Granted, he was always the feast or famine type (if you'll pardon the TMI) but we went from mostly dinners and snacks to no food for a week and will-feed-300-guests-feasts.

If that makes sense. To put it less delicately, he went from difficult but fairly regular bowel movements interspersed with ocassional loose stools to exclusively either days with no BMs to hours of diarrhea.

And he put on, suddenly, quite a bit of weight. This was while still in school, still taking PE, and getting much more physical activity than he does now. The whole family is heavy, and while he always had a "spaghetti tummy" (as a child) and a "pizza stomach" as he got older, he was never terribly overweight.

I looked up some stuff on the Internet and ultimately (as an amateur) decided that he's probably hypoglycemic or had hypothyroidism, which is apparently very common among folks with Down syndrome.

My mom had just (finally) gotten insurance, so I suggested at least blood tests. Hypothyroidism is fairly easily treated, and covered all of the above symptoms.

But, for whatever reason, the blood tests didn't get done.

Since we made our plans to go to Disney World firm six months ago, I've been nagging for him to go to the doctor so that we can officially get him a Guest Assistance Card requesting that he not have to stand in line outside (due to the above mentioned dehydration issues).

He finally went last week. The doctor ordered blood tests. He took the blood tests yesterday. He goes back to the doctor next week.

But today the pharmacy called my mom and said that he has a prescription pending (it will be there tomorrow) for thyroid medication.

Randomness

1. South Park is doing a parody of Buck Rogers in the 25th Century right now, complete with the actual theme music. I am now fighting the urge to (1) splurge and finally buy the DVD set (for Buck Rogers, not South Park), which has been on my wish list since it came out and (2) look up Buck Rogers fic on the Internet, except that I was a Buck/Wilma 'shipper and that probably doesn't exist.
2. I finished journals and agenda book stuff, but only got a couple Little House chapters done.
   
3. I got a Macworld magazine today and discovered that they make portable DVD players that you can dock your video iPod with (so as to acquire a larger screen). Nifty.
4. There was a new Good Eats tonight about milk. I now have "I AM LACTOSE MAN!!!!" stuck in my head.
5. I majorly, majorly, majorly broke my "school work only until 8:00" rule.
6. I want an iPhone! (Stop it with the commercials, people! I have to save for Disney World!)
   

Sigh

Well, that went okay. Certainly it was shorter than most of my IEPs...but they brought both A. and her brother M.

Meanwhile, I ordered the sixth graders' graduation presents; they should be here Tuesday. I just need to get A. something for her 'graduation' from my program to another one. Also meanwhile, I am finishing up the chapters I missed switchifying for Little House on the Prairie. My goal tonight is to finish those up and make journals and agenda book stuff for next week.

Over the weekend, I plan to start on the book we're doing for summer school (American History Through Poetry, I think is the title) and make journals for summer school. I still have to figure out something to do in the way of agenda books since ours stop the week after school is over. Then, the last thing I need to do is chop up a video file of Little House and switchify that as a whole-book review. I'm planning on burning a CD of those and sending them home with the kids (the program comes with a free player).

Packing for summer school should be easier this year; I'm going to bring their various folders, our bag of fidgets, and a few easy-to-transport games, and that should be it aside from basics like crayons, scotch tape ('cause E. + glue = big mess), and a few books.

Then I actually get a few days off before summer school starts....

1 More Box

One more box, and the IEP is written.

It's not my most stellar IEP, though most people who have attended my IEPs think even my not-so-well-written ones are good (helps that I'm a fairly good writer, I suppose)...but this one fought me at every turn.

Are You Tone Deaf?

Via Kristina's blog, a neat test to determine if you are tone deaf.

I love to sing. If I do it near my students, E. covers my mouth and says "good job." (In other words, "shut up.")

For what it's worth, I scored:

64% correct, which is the 12th percentile, and considered "low normal."

(Edited to add the actual link inside the post. I am brain dead.)

Possibly TMI

One of the things about having a classroom full of girls (unusual for a special day class) and female aides is that you all end up...hormonal...together.

I should have known this was coming when J. was...hormonal...last week. E. was complaining of her stomach all day and squeezing our vibrating puppy (kind of like this but shaped like a stuffed puppy -- and it seems to no longer exist anywhere on the Internet.

I am now hiding in my dark room trying to convince myself to go get something for my migraine. :-(

Uhm

Just when I thought fandom couldn't suprise me any more, I read this.

I like those commercials too, and I've become more and more of an Apple fangirl since I bought my first iBook (in order to be able to run iTunes; there were no iPods yet, but it came in handy 6 months later!), but...

...just...'but.'

I Want One

Oh, I'm in deep geek lust.

I want one!

Finally

While nowhere near as momentous an occasion as Cat finishing her computer class, I am currently typing the last chapter of Little House on the Prairie into Writing With Symbols.

One thing I've noticed re-reading this book as I've done it with my class is the deeply loving relationship that existed between Charles and Caroline Ingalls. Though the book is written through a child's eyes, it's very apparent, both through actions (e.g. Pa's buying Ma some calico to make a dress) and through descriptions (the way Laura describes Ma's reaction to the gift).

Of course, as an aide in my classroom said, she'd have to love the guy to follow him across open wilderness...without getting a 'convenient' divorce by leaving him for hostile Native Americans! :-)

By the way -- I've not seen Memoirs of a Geisha, but Charmax has made an absolutely breathtaking vid for the movie. (The link is to an imeem stream; I recommend going to her site and downloading the actual thing).

You're...Kidding Me, Right?

This is ridiculous.

Namely, the last paragraph.

Sunburn can be prevented by following such sun-protection measures as wearing a hat; covering up while in the sun; avoiding the sun between 10 a.m. and 4 p.m.; and using sunscreen with a sun protection factor (SPF) of 15 or higher.

Um...it's 2007.

Do you really need to be told how not to get sunburned?

I think my faith in humanity just took another hit.

(By the way, as a grammar nerd, I'm ashamed to admit that I can't be certain about this, but...aren't the semicolons used incorrectly?)

Stargate Atlantis Comments

(Sigh)

Hit the back button right now if you don't like spoilers and/or did not see "Sunday."





1. If I've learned one thing about fandom by now, it's that Rodney, while appropriately guilty and traumatized now, will be back to hunky dory normal next week.

Witness SG-1, which has mentioned Janet maybe 5 times, shown her once, and mentioned her daughter once in a cut scene and once when Sam was dying.

2. Oh my frelling God, if you're going to steal the plot wholesale from SG-1 and whack your chief medical officer, don't steal the stupid eulogy too.

I mean, really. The best part about "Heroes" was Sam's eulogy, courtesy of Teal'c, pointing out that every life Janet saved was, in a way, keeping Janet alive.

3. If I know anything about fandom, there will be a lot of Ghost Carson Rodney/Carson fics ('cause, even though I haven't seen 'em, I'm sure they exist) 'cause that ending? Totally cheesy and totally an invite for...well...fangirly Ghost Carson hot lovin.

Eesh.

I fell in and out of like with SG-1 over the years (I'm currently in deep like, mostly 'cause of the whole Ori thing -- though the fact that I enjoy Vala tremendously and Mitchell often helps), but I've been mostly out of like with Atlantis.

The whole idea here...not lovin it. Sorry.

And it has nothing to do with my definite feelings of "meh" when it comes to the character.

Maybe it'll be better next year with Amanda Tapping -- my favorite episode this year was "McKay and Mrs. Miller," and the scene where Sam (played by an actress born in England and raised in Canada) mocks the Canadian "sorry" and the scene where she learns Rodney's real name is Meredith...priceless.

How to Hate a Book

You'd think I'd have learned with Sideways Stories from Wayside School.

Or How to Eat Fried Worms.

But no.

I had to eschew the pre-summarized high-interest, low-readability stuff readily available on the Internet and share one of my childhood favorites, Little House on the Prairie, with my kiddos.

Now, I teach kids with moderate to severe disabilities (though we're skewing towards the "moderate" this year)...they need the text summarized, simplified, and picture-supported. Hence my love for the pre-summarized adapted classics mentioned above.

We have 3 more chapters of Little House and I CAN'T TAKE IT ANYMORE!

And More...

Ahem.

This is awesome.

I write mostly sci-fi fan fiction.

I have never flown in space. I have never flown in a wormhole. I have never met my alternate-reality self. I have never saved someone's life (that I know of). I have never (thinking of my stories, here, pardon me) wrecked my knee. Twice. I have never been involved in a wacky love triangle involving my late fiancee's brother and a Cylon.

In college, I took a class called The Holocaust in Literature and Film. For that class, I had to do a project. For that project, I created a compilation of diary entries from fictional people all over Lithuania during World War II. These included the school work (propaganda) of a 6 year old Lithuanian boy in favor of the Germans, someone telling the story of a Lithuanian resistance fighter (praising her), and (get this), a German soldier in the Luftwaffe (I think) talking about how horrible she was.

I hope I don't have to actually say that I'm not a 6 year old indoctrinated Lithuanian boy, 20 some odd year old Lithuanian resistance fighter, or a German Luftwaffe soldier.

I could go on.

But I'll just say this.

I also wrote about a deaf character.

I am...

...get ready...

not Deaf (culturally).

Or deaf (biologically).

Apparently, one of the those statements must be false, if you believe the folks who started all this. Maybe I should brush up on my ASL....

Only a Year and a Half?

Okay, so, here's the thing.

I forget what TV show it was on, but someone went on a rant about how, when you don't return a message, and then you feel bad about not returning the message, so you REALLY don't return the message 'cause it's all awkward?

(Geesh, I don't even watch Gilmore Girls, and that sounded...well...Gilmore Girls-y.)

Anyhow, the longer it was that I didn't update, the more I thought, "Wow, I should blog about this, only...well...I haven't blogged in forever and a day, and...."

Ahem.

Anyhow, reading a fellow teacher's blog inspired me to try to post regularly again.

Some posts will probably be about teaching, some about the disability rights movement, some about photography, some about family, and some about fandom.

You know -- same old, same old, from an eclectic teacher geek.

My first topic, however, is the "wank" going on over on LiveJournal.

Here's the thing. I don't actively read much fanfic anymore -- mostly a few old favorites. While I'm an equal-opportunity 'shipper, I mostly read rated PG-13 stuff at most. Yeah, a few of those qualify as slash, but I'm as likely to like Sue/Jack (from Sue Thomas: F.B.Eye), Mulder/Scully (um...if you don't know, you don't care about the fandom stuff I'm talking about here anyway), Riker/Troi (ST:TNG, and darned little of it exists!), John/Aeryn (Farscape), or Sam/Cameron (SG-1) as I am Xena/Gabrielle or Sam/Janet.

Here's the other thing. I shouldn't be, but I'm still kinda shy about the last two, and don't have slash or anything related listed in my interests.

To be honest, I don't get a lot of the 'ships (apparently, they are now called kinks, if they're not canon) out there. Opinions about slash aside, I just don't get Harry/Draco. And I really, really don't get, say, "twincest," which is one of the things ranted about in the link above (that would be Fred/George).

But randomly deleting communities because they write adult content about twins? I have no desire to read comms where that stuff is involved...but saying that you read about adult wizarding twins...ahem...boffing each other and saying that it's related to an online search for real pedophiles bothers me.

Deleting the personal journal of an incest survivor because "incest" was listed as an interest of hers bothers me.

Why?

Because, like many things, it's a slippery slope, and our increasingly puritanical society is getting slipperier and slipperier.

Because I consider myself at least something of an expert on World War II, but if I listed it, or, say, "Hitler," or "genocide" as an interest -- I might have been the next to go.

Never mind that my interest in that time is a sort of morbid fascination coupled with, believe it or not, my interest in the disability rights movement. (90+% of people in Germany with disabilities -- physical and intellectual -- were killed during WWII.)

I'm not a prolific writer, and my stuff is decidedly PG. Everytime I try to write more (such as a short Farscape story called "The Second Time" I've been working on), I get stuck. And I don't 'ship troublesome 'ships.

But I had to say something.

Meanwhile, I'm flashing back to my very first days on the Internet, in college, when I went looking for Star Trek fan fiction (which I'd just learned existed, but although my dad was a sci-fi person, he was not a fandom person), and stumbled upon the debate about debating about the flame war about debating about the flame war about debating about slash.

Eeesh.

$35 later...

...and I still don't have a full tank of gas.

Oh well.

I am having a horrible time writing this present level for J's IEP...the academic part, which I thought would be hardest, actually fell together nicely. Meh.

TGIF

Not much to say.

It's Friday. We had our awards assembly today. They decided to schedule it a mere 20 minutes before our busses "ABSOLUTELY HAVE TO LEAVE" (in other words, get out here or you're driving the kids home), which meant we had to slink out in the middle wearing our "we're special" signs, which I hate, but other than that, it went well.

In random news, my nascent carpal tunnel syndrome is acting up again, so not much typing from me tonight.

I'm going to bed....

Timing

I could, if I were determined to forget my true age, sound like my mom and gripe about when I could fill up my car (granted, the Mazda, not the van) for about $10.

Instead, I'm going to gripe about the fact that when I drove past the Arco on Devonshire at 3:45 today, gas was $2.41. When I drove back past it 3 hours later, to get gas, it was $2.51.

Eesh. This keeps up, and I might have to start looking for an apartment in Simi -- for what I pay here, I could only get a small 1-bedroom, but considering that $20 of gas doesn't even last 3 days anymore....

Insert Creative Title Here

POK-mobile post below, kind of.

Still haven't figured out if I had a panic attack or not. I know that even yesterday when I thought about it, I immediately got nervous, as though scared it would happen again -- which thought was prompted by remembering someone else having that reaction after their first panic attack -- but I'm very leery of talking myself into some sort of anxiety disorder.

I remember being on a mailing list once where just that happened -- someone had a random panic attack once, and then feared getting another one so much that they made themselves even more nervous and upset.

Sleeping well last night seems to have helped, since I can talk about it today without getting too worked up (and without wanting to spend the night at my mom's Just In Case), though I accomplished that with some Tylenol PM (intentionally, for the first time...I bought the bottle by accident when I was having wisdom tooth problems and took it for lack of a pain killer). I'm still quite wiped, both from the actual event itself (you would have thought I'd run ten miles the way my heart was beating) and from the not sleeping, but getting there.

...meanwhile, I will need to make a Ralphs run tomorrow, and I'm going to make myself go back to the scene of the crime, so to speak, and not any other Ralphs.

Oh, and note to S., my student who has panic attacks: Next time you have one, you can have all the spicy chex mix in the world, as far as I'm concerned, if it makes you feel better. Props to you, buddy, just for being awake and happy at school every day. If there were a school award for courage, I'd give it to you at the next assembly without a second thought, kiddo.

Back to School

Gosh, that was a fast spring break. :-(

I'm not sure I'm ready for that last mad dash towards the end of the year, but it could just be that I had one of my (thankfully increasingly rare) bouts of insomnia last night, and maybe got 2 or 3 hours of sleep.

Or, it could be that I think I had a panic attack earlier today. I say "I think" because I've never had one before. A mild one, to be sure, because I could still function, but it sure felt like one. My hands kept shaking for about an hour after the rest of it stopped. It was the weirdest thing...and hopefully an occurrence that won't be repeated.

I've got a bunch of stuff to get accomplished this week, but I've done pretty well at keeping to my New Year's Resolution of doing school stuff at home only 3 nights a week, and only until 10 at the latest at that.

So, here's to the rest of the year....

Confessions of a Former Catholic School Student

I don't often talk about it, but I went to a Lutheran Elementary school, a Catholic middle/high school, and a Lutheran college. I'm a baptised Lutheran whose religious views are actually Unitarian Universalist.

However, I just wanted to say "rest in peace" to Pope John Paul II.

I remember sitting in masses at school, and we always prayed for "John Paul, our Pope."

But what I remember most was sitting in a very unusual religion class (the teacher made a very convincing argument that life here on Earth was actually Purgatory...she was only there one year ;-)) listening to a story from a Chicken Soup for the Soul book.

It tells of a young Polish man who couldn't bear the horrors of the Holocaust and helped save several Jewish refugees. The story ends by saying that he would eventually become Pope John Paul II.

Even though I don't agree with many of his more conservative views, the respect and dignity he granted other religions by going into synagogues and mosques impressed me greatly, and the reverence for life in a time filled with nothing but religious hatred and disregard for life was remarkable.

I wonder if I still remember how to say a Hail Mary....

May he rest in peace.

One Last Thought

I've been watching the bitter debate about Terri Shiavo with some interest, as I said in a previous post.

Now that she has died, I see no end to the debate, but I just wanted to post a few last thoughts.

Most, if not all, of the people in favor of the removal of her feeding tube (I've tube fed a kid before...it's not as scary a thing as people think it is) have said how they wouldn't want to "live like that."

So, speaking as the sister of an adult (officially, now, since he's 18) with a cognitive disability, and the teacher of kids with moderate to severe/multiple/profound disabilities, I just want to say...

...not a single one of those kids would ever say that their life wasn't worth living. Not a single one of those kids lived life in a self-pity ridden, anguished stupor that people seem to think that severe disability entails.

It's not really a cliche to say that attitudes are the real disabilities.

It's really not.

I've seen a child trying to tell me he was hungry getting so frustrated that he bit his arm. But once I realized what he was trying to communicate, and taught him to sign "eat," he doesn't bite his arm out of hunger any more.

Once my reaction changed -- once I understood what he was trying to tell me -- his frustration went away.

Yes, C. has challenges. Yes, he gets frustrated sometimes. But I've also seen him run up to a favorite adult, hug them, and try to kiss them (he can't pucker his lips, so he just kind of puts his lips on your face). I've seen him laugh when he hears music, or when he runs, or when we spin around together in fast circles.

I knew another little boy who had pretty severe physical disabilities but little or no cognitive challenges. I watched him, one day, try to tell the adult that was supporting him in school that his stomach hurt. He used his Dynavox (a communication device that's a touch-screen computer with voice output), facial expressions, his own signs, and body language to say "ow!" The guy with him was oblivious, and after a few minutes of this, I couldn't take it anymore, and went over and intervened.

Once I ascertained that M's stomach hurt, I told him I'd get E. to take him to the bathroom. He said, "Uh-uh." He didn't speak verbally often (most people couldn't understand it, due to the CP) but he had no (uh-uh) down pat.

Again -- it's all about the reactions of people around the person with a disability.

I saw, and understood, his communication -- which made him trust me rather than the guy who didn't hear his Dynavox saying "my body hurts" over and over.

Yes, it's a challenge sometimes to ensure that people with disabilities can communicate (I knew one young lady who would indicate pleasure by holding her head up and kicking her feet on her wheelchair trays) but the main source of frustration I have seen in all these kids, young adults, and adults comes not from the disability.

It comes from our reaction.

A life with disability isn't inherently not worth living.

Whatever you think of Terri Shiavo's decision (assuming that was her wish, as stated by her husband) -- that's what I wish we would all learn.

You know -- Tiger Woods would probably think life without golf is not worth living. Michelle Kwan would probably think the same about ice skating.

Do you feel terribly deprived by not going golfing today?

Life without walking, or life without verbal communication, or life without any number of things that people think disability steals -- it's not less...it's just different.

My life is not less than Tiger Woods because I couldn't hit a golf ball accurately if my life depended on it. It's just different from his.

We all have talents.

C., of whom I spoke before, is very good at running, and has big, beautiful, very communicative brown eyes.

M., of whom I spoke before, has a fantastic sense of humor, and the most adorable smile you've ever seen.

A., one of my students this year, has perfect pitch.

Patrick, who has milder challenges than the students above, knows he has a disability. He knows it's called "Down syndrome." He knows that his girlfriend has Down syndrome, and that it was at least partially responsible for her needing brain surgery.

He knows that because he has Down syndrome, he has to work harder to make other people understand him.

While he may get frustrated sometimes (but then again, I'd be frustrated if someone didn't understand "absolutely-plain-just-the-meat-and-bun" and tried to offer me a cheeseburger too)...he is, in general, a happy guy.

Don't get me wrong -- the image of the happy-go-lucky person with Down syndrome is an oversimplification (an extra chromosome, no matter what people say, doesn't make you huggy) -- but he enjoys life, and he enjoys the people in his life that treat him as Patrick...not as "that kid with Down syndrome."

And, you know -- he has the whole staff of his Carl's Jr. charmed, along with several waitresses at Carrows, a checker or five at Ralphs, and servers at my Dennys and Dominoes.

He has more acquaintances and friends in the community than most adults my age.

You just ask him if his life isn't worth living.

None of their lives is unending torture, and they would disagree vehemently with that.

So whatever you think about the Terri Shiavo thing, just take a moment to try to realign your perceptions.

Please.

I know several kids that just want you to be their friends...and not to judge their lives based on what you think they're missing.

There are No Words

If someone hadn't died, this would be just hysterical.

Must...resist...gallows...humor....

Must...not...joke...about...taping...things...back...together....

Transparent Dock

So, along with a limited attention span for desktop backgrounds, I am very big on clean, uncluttered desktops. So, imagine my disappointment when I installed Panther (OS 10.3) and Transparent Dock didn't work in Panther.

I admit, I haven't checked for updates in a few months, though I was doing so every month or two before that.

Well, it's updated for Panther, and -- yay -- my dock is now nice and transparent. :-)

Okay, yeah, I'm a nerd....

New Blog

I've decided to separate the story posts out from this blog, as that's a whole different audience than the people who are hear to read about the trials of a sci-fan or to see pictures of Patrick's birthday.

So, SpooWriter's Storybits.

This one will continue, by the way; it's just a way to separate the many sides of spoo.

Aww

So, about 2 months before the actual demise of Call for Help, between when G4 and Tech TV merged when Leo wasn't hosting it, and when he came back for those 2 lovely months, Wil Wheaton (yes, Wesley, from The Next Generation) guest hosted for a while.

Now, I had a tremendous crush on him as a kid, seeing a lot of myself in Wesley (a nerd who often got along better with adults than other kids), and I thought it was cool that he was a nerd in real life.

I've been reading his blog for a while now, and he posted this today. :-(

I remember that day coming with our dog Poochie when I was little...my dad had to pick him up and carry him to the vet because he was so weak. I know it'll come with my kitties someday, but right now, I just feel bad for him, and for The Bear.

Shameless Self-Promotion

I'm one of those people that gets very bored with her desktop image. On my PC, I have Webshots installed and it changes my wallpaper every 15 minutes. On my Mac, you can choose a folder to use for your desktop picture, and I have that set to change every 5 seconds, because it does a nice dissolve thing.

However, I've been using my PC a lot this week, making sound bytes for Patrick, and I've been completely stuck on one image, which you can find here. A description of it is here (it's the last one on the page, called "Hear Me.")

It's actually the story cover for this story. The guy is being tortured and the girl is trying to calm him down, is what it amounts to in the wallpaper.

Just thought I'd share...the thought just struck me as I was turning off Webshots, again, that this is very unusual for me...though it happens. Did the same thing after I made my favorite Lord of the Rings wallpaper, "The Bravest Thing."

Busy Busy

There's a new wallpaper and a new story at my website.

Only 10 more season passes to go, then the wish lists.

Then all the thumbs-up ratings I've done in the last who-knows-how long.

Tech Woes

So, it hasn't been a good technology day.

Forgetting all the rest of the technology woes that happened, including networking working only one way, wireless working better than the wired networking, and so forth...

...my TiVo got amnesia. I even re-did the guided setup, and it still doesn't think there are upcoming episodes for any of my season passes -- unless I make new, identical season passes.

Then, all is well, and it sees the upcoming episodes, and adds them to the to-do list.

So now I get to re-make all 30 of my season passes -- not to mention, my wishlists, which disappeared in one of my restarting/cache-clearing attempts.

Note to My TiVo

You do, in fact, have program information through April 11th.

So sayeth your own "System Information" page.

So sayeth your on-screen program guide.

So why, pray tell, are you convinced that no upcoming episodes exist for anything, either in the Season Pass Manager, or in the "Search by Name" sections?

Sigh.

Repeat with me: I do have program information. I do have program information.

So say we all. G'night.

Tech Tip

Except that the signal got too iffy, I almost posted a short note last night from my mom's house, using one of her neighbors' wi-fi.

The reason?

No password required, and a network name set to "default."

Good thing I'm not a hacker....

Website Update

I've been a busy beaver tonight. I've added two (1 and 2) stories to my website. Both are Lord of the Rings stories...sort of halfway between movie- and book-verse.

Semi-Late Pictures

Patrick in Front of the Matterhorn
Originally uploaded by spoowriter.

I just posted 11 photos from our Disneyland trip last weekend on flickr. I still can't believe Patrick is 18....

Life, or Something Like It

As a teacher of students with moderate, severe, and/or profound disabilities, I've been watching the Terri Shiavo thing with deeply mixed feelings.

As the one person, who had apparently expressed a wish not to be kept alive by "extraordinary means," then I think she has the right for her wishes to be fulfilled, if indeed she had expressed that wish.

And, more to the point, if she is truly in a persistent vegetative state, which is probably what she was referring to if and when she expressed that wish.

I don't think that a feeding tube, in and of itself, is a truly extraordinary measure -- though I've heard commentators during this case who talk only of that...of the fact that she "can't even eat on her own." As if that, in and of itself, is indicative of the extent of the damage to her brain.

The thing is -- swallowing is a complex task. I've known three students that were fed via a G-tube. All had severe developmental disabilities -- but they were far from nonresponsive. One walked, explored his environment, and learned to recognize his name in print. One showed her recognition of people she liked with a wide smile and by lifting her head up so she could see them better. The other laughed, grinned, and rhythmically banged her feet against the feet rests on her wheelchair when people joked with her.

So as someone who has known kids with severe disabilities -- what worries me about the Terri Shiavo case is two things.

First -- I don't know that anyone could know for sure that the smiles and eye movements that she shows on videos are reflexes and nothing more. I think to know that for sure, people should be exposing her to cause and effect devices to see if she is doing these things intentionally. If she is, or can be taught to, that changes the dynamics of the case.

It's certain that she has severe to profound disabilities...but that is not the same as being "a vegetable" or having no quality of life. I don't know that she could be taught to speak again, as some have claimed, but if she truly does recognize people, even sometimes, then rehabilitiation should have been at least attempted, and the people that claim her husband was neglectful have something of a case.

Second -- the attitude behind this concerns me deeply. The attitude that the life with a severe disability is not worth living worries me not only because I have seen, first hand, children and young adults with severe disabilities enjoying life. They are not miserable because of the challenges they face. As long as they are surrounded by people dedicated to giving them as much appropriate support and autonomy as possible, to empower them and to allow them control over their own lives, their lives aren't the misery people perceive them as.

I've known students with severe physical disabilities, severe cognitive disabilities, and students with both physical and cognitive challenges.

All of them laughed, smiled, cared for people around them, and in general lived the same lives you and I do -- with differences, with challenges, sure, but fulfilling lives nonetheless.

It was not too long ago that people would have looked at my brother, whose cognitive challenges are far less than many students I have known, and claimed that he would be best institutionalized because he would have no quality of life anyway.

The world has changed -- but not enough yet, I don't think. It's like people that no longer pity people with paraplegia but still felt like it was best that Christopher Reeve died, because life with quadriplegia surely wouldn't be worth living.

This is the danger, I think, of the Terri Shiavo case, and why I'm so torn about it.

There is the part of me that absolutely believes that this is her decision, and so be it.

But there's the nascent activist in me, who still sees every day people who think my kids' education isn't inherently as important as other kids' education, who sees people who can't imagine what they'd do if they had a child like A., who sees my kids' lives as somehow less enjoyable than their own simply because they don't read, or don't understand math, or are learning to communicate -- that part of me hates the spectacle that is being made about a life that other people see as not worth living.

If you want to know what life is really like for people with disabilites -- just get to know some people who happen to have disabilities. Voluneer with the Special Olympics, or contact Best Buddies.

The funny thing is -- I bet you'll get even more out of it than the people you get to know.

Is This a Good Thing?

As someone who really enjoyed Ender's Game from a sociological/psychological standpoint (not to mention wondering if you could really, in a few generations, selectively breed kids that gifted), and also having not seen Troy...

...Is this a good thing?

So, spring break is almost here. All the kids' report cards are done, and I just need to survive the next two days (we have Friday off) then I can relax a bit.

It's weird. The second year of teaching is supposed to be less stressful, but really, it's not. Sure, you know more about The Game, and where to get this form or that form -- but you start looking more at other things and being more critical of yourself. You're not in Survival Mode anymore, and that's not necessarily a good thing.

But, on the other hand, most people seem to think I know what I'm doing. I'm getting kids from other people's classes when they have meltdowns -- not a good thing, really, except that it says that the general perception is that I'm good at my job.

Today's brainteaser: when the heck did I break my toe again? This time, I don't even remember hitting anything...though last time, all it took was a gentle tap in the wrong place at the wrong time.

Never thought I'd be hoping for warm weather, but at least then I could get away with wearing decent looking sandals instead of hobbling around in shoes....

By the Way

For those of you who visit Disneyland a lot, you will know exactly what the following two facts say about the expected attendance levels for the day:

• both Columbia and the Mark Twain were sailing
• they were actually running the facing-forward trains.

Buzz Lightyear

Wow, was it crowded! Of course, it probably will be the rest of the year, as the 50th anniversary festivities continue.

Patrick had fun, even though the Disney Gallery was closed, so he couldn't get his poster. But, instead, one of the stores on Main Street had a lot of old souvenirs that they are re-issuing (and stuff that is made to look like old souvenirs). He got a monorail game originally released in 1960, and was completely ecstatic.

The first thing we did, after I paid $20 to get a new annual pass (mine got lost), was go on the new Buzz Lightyear ride. It is obviously modeled after the attraction at Disneyworld -- you can tell by the queue line, and the style of boarding, which is very fast (like the Haunted House). Many attractions at the Magic Kingdom, and most of the ones at EPCOT, when I was there last, board thusly, with most of the line inside, to protect people from the climate.

The ride itself is very cool. It moves slowly, like a one of the funhouses (think Snow White, Peter Pan, etc.), but you are in a car that spins (like Roger Rabbit) using a joystick (you have much more control than on Roger Rabbit), and you have laster video game guns and a score tally at each seat.

As you ride, you see all these Z (Emperor Zurg) targets all over the place. Some are on Zurgs, and some are on their own. The goal is to hit as many of these as you can, and to get as many points as you can.

(I got 8800, which, given that I used to play Duck Hunt on my original Nintendo about 2 inches from the screen and still miss things, isn't too darned bad. It did seem to me that you had to aim a bit lower than you would think to hit things, though.)

By the time we left (the lines were too long, Patrick was dehydrated, and I was getting a migraine) the line was much longer, but at 9:30 or so this morning, 1 1/2 hours after the park opened, it was only 25 minutes or so.

Very fun. :-)

Hello From Buena Park

Howdy from my fold-out couch at the Hampton Inn & Suites on Orangethorpe.

Tomorrow, my mom, brother, and I are going to Disneyland to celebrate Patrick's birthday. What my mom didn't know until after she'd come up with this brilliant idea for a birthday surprise was that the Buzz Lightyear ride opened Friday.

Oh, and, the rain, which might have kept crowds down, is over.

It is going to be flippin' packed.

I wouldn't mind too much, really, except that I have to go to work Monday since our spring break doesn't start until Friday (Thursday afternoon, when we could have left early, our speech therapist invited the assistive tech. people to come and talk to us from 1 to 3...).

If we happen to luck out and happen to get to ride it, I'll post about it.

Otherwise, happy Sunday to everyone.

Meanwhile, I'm going to finish watching Matilda on TBS.

Oh -- and I got my ftp access working. There's a new story at my website.

Ickiness

Well.

We haven't had a day like that since the beginning of the year. Eesh.

Of course, the fact that I slept wrong and could barely move my head exacerbated it, along with the popped blister on my ring finger, which is making typing interesting (and therefore making this a short post).

And, in the oh-my-God category, it is now 3 days until Patrick's 18th birthday.

Good grief.

Brief Musings

So, the other day, Sci-Fi showed its...answer to the 50s campy sci-fi (at least, I hope it was intended to be that).

On one night, it showed Battlestar Galactica and both Stargates.

Then, Mansquito.

Yup. I assume it was about a guy who turned into a mosquito...y'know, like The Fly.

See, it's things like that that get rolled eyes when I mention liking science fiction.

But to me, any compelling movie/TV show/book, etc. can't just rest on its setting. You can't have the most exciting setting in the world (2000 years in the future, in a parallel universe where etc. etc.) without compelling characters and an interesting story.

People who've never read Clarke's 2001 (which, honest to goodness, makes the movie make lots more sense); people who've never seen contemplative, speculative fiction like Contact; people who dismissed Buffy and a campy teeny-bopper show never saw the masterful "The Body"; these people have missed out on lots of gosh-darned good storytelling because of the associations they've made with the term "sci-fi."

And that's a shame.

Pointless Observation

K-Mart has 4 hour Chlor-Trimeton! :-)

I Am Such a Nerd

So, I'm watching South Park -- the first fourth grade one -- and these two nerd guys are arguing about how many original Star Trek episodes there were. Nerd 1 argues for 72. Nerd 2 argues for 73. All the SP kids think they're pathetic.

And my first thought?

Uh, guys, there were seventy-nine.

{sigh}

And it got worse...they were then showing how nerdy Butters was 'cause he was saying how "The Menagerie" being two parts only counted as one because it was the original pilot, and later was split up?

Nuh-uh. The original pilot was "The Cage," which was spliced into the two-parter "The Menagerie" later....

Let's all sing the "I'm a nerd" song....

You're Kidding Me, Right?

It's now an act of terrorism to write a short story about zombies -- zombies, for cryin' out loud -- taking over a high school.

Now, being extremely generous, I can see that the fact that the kid who wrote it is a student there might -- maybe -- make it a little more suspicious.

However.

You tell people to write about what they know.

I know that if you look through my old writings...I set stories in high schools when I was in high school; in college when I was in college, and so forth.

So, if your writing bent happens towards the zombies, and you're in high school, you will probably write a story about zombies at a high school.

Ridiculous....

In nerd news, former Screen Savers guy Dan Huard has joined with Roger Chang (of Call For Help and The Screensavers) has started a technology website called Scopetech. Yay.

In other nerd news, thanks to ffmpegX, I am currently ripping some of my DVDs to my laptop's hard drive to take along when I go with my mom and Patrick to Disneyland for the weekend in 2 weeks for Patrick's 18th (gulp!) birthday.

It's something of an experiment; if it results in longer battery life (since it won't be spinning the actual DVD, it should take less battery power to play an avi file than the DVD) I will probably rip most of them so that my DVD case can stay safely home when travelling, since my whole DVD collection (mostly) fits in there.

In more nerd news, since this is from an English/Irish online store, I wonder if thinkgeek has one of these?

Finally, since my grandpa now has a lot of time on his hands, he wants to buy a computer. This is a scary prospect. He wants broadband, but doesn't know what spyware, viruses, or popups are, let alone that they're bad and that they happen a lot with broadband.

So I'm advocating a Mac.

My cousin keeps saying that the differences in user interface (?!) will confuse him, but as far as I'm concerned, the main differences are the one-button mouse (so we'll buy him a two-button mouse, so he can learn about right-clicking) and having option and command keys instead of Alt and Command, but he won't be using those anyway. When you come down to it, File | Save is the same in both OSs.

And, if he does have trouble translating the computer skills to the computers at work, he can buy Virtual PC to install whatever he needs to install, and run it when not connected to the Internet.

Meanwhile my Pepsi/iTunes winning streak seems to be over...but since I won about 6 in a row over last week, a few "please play agains" will not bug me too much.

Now to find my Annual Pass so I can get to Disneyland and buy Patrick's birthday present next weekend....

Science

It's a science night...I just finished creating 2 modified versions of the 5th graders' science test...the first, for A., involves reading short paragraphs about 3 popular molecules and answering questions, and the second, for R.L., involves matching words & pictures for popular molecules (officially -- water, salt, and oxygen).

See, they're mainstreamed into a science class that studied chemistry, but they have a horribly uninteresting substitute, so I figured the important thing for them to know about chemistry was a little bit about some things they'll run into life.

Meanwhile, as I'm typing up the last of A's paragraphs (about salt), Alton Brown is explaining emulsifiers on Good Eats...seriously, Stace, tape this show and use it for your chemistry class...at least, the parts with the styrofoam balls and push pins. ;-)

Murphy's Law moment of the day: I pick Patrick up from school on Tuesdays and Thursdays, because he has an afterschool work experience/class thing. I sat there today for about 25 minutes, and finally called my mom (rather than him, so he wouldn't get in trouble if he had his cell phone on) and asked if she knew why his class was running late.

"Oooooh!" she says. "It's Thursday! Oh, he stayed home from school today."

Sigh.

Oops

Okay, so the FTP server is down. The site's updated on my hard drive anyway. Others will just have to wait to read the newest masterpiece (not). :-)