Twinkle Little Star

Someday the Mountain Might Get Us But the Law Never Will

I've been sick the past few days and we've been inside and (I've) been sleeping a lot. NyQuil makes me have all these crazy dreams. I've dreamed a lot about my mother being alive and the children being dead. Very said dream I had where my children both needed brain surgery and I got sick of waiting for my FIL(??) to come over and perform the surgeries so I started them myself and then screwed up and they both died. Then I just walked around my house in a total daze, thinking...that was it? That was motherhood for me and now I have to go back to my old life? Then I went and crawled into their crib and tried to see if I could still smell them. It was one of those dreams where I woke up and was still traumatized from it and had to take a few minutes to sort out fact from fiction.

Another bazaar dream I had was about John Schneider. You know the guy from "The Dukes of Hazard"? I didn't even watch that show when I was nine years old, but my friends from Lewis and Clark Elementary School did and they thought he was hot. I thought he looked pasty-white and had girls hair and used lip gloss. Anyway, I was watching him on TV, some show about the Dukes of Hazard when I was all drugged up on NyQuil or something...and I still don't think the young JS is attractive but the old JS...now he's HOT. Who knew? Darker, shorter hair, no discernible lip gloss, and a few wrinkles on the not so pasty-white face did it for me.

So then...and I have no excuse for this except to say that I was sick and couldn't sleep because my nose was stuffy, I watched like, almost three episodes of the Dukes of Hazard. !!!??? And I have some questions and concerns. Such as:

What exactly do Bo and Luke DO for a living? How do they buy their gas? One thing I have to say for this show...they make being poor and doing nothing all day seem pretty cool.

Why does everybody on that show always wear the EXACT SAME OUTFIT? In every scene? (Except for Daisy, who switches off from tight chic jeans and heels, a gingham prairie dress and heels, and of course, Daisy Dukes and heels?) Is it because their is no Laundromat in Hazard?

Daisy, Bo and Luke are all cousins but Uncle Jesse is all three of their'ses Uncle. How does that work? Where are their parents? Are the parents the only six people to die in a motor vehicle accident in Hazard?

Daisy, Bo and Luke are all supposed to be hot, but they never date. Is it supposed to be an incestuous threesome?

Why is there so much construction going on in the county but no cement roads?

Who keeps electing Boss Hogg?

Wouldn't the sheriff have about 20,000 warrants for Bo and Luke resisting arrest? Why don't they just get them for that and quit bothering to set up all these schemes to frame them?

Don't they owe Cooter enough money for Cooter to get his own house so he can take a shower?

And of course, what is the tax rate in Hazard? They have to pay for all those wrecked police cars. It must be enormous.

Well, anyway, that was my Friday night. It won't happen again.

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The kiddos past the ten month mark over the weekend. They go to the ped for their nine month well baby check-up next week, so that works out well...

I have had to beg my pediatrician for hearing and vision screening referrals for the kids. I finally got a hearing screening done last time. (Everything was fine.) And this time I am not leaving until I get a vision referral. Naim has obvious strabismus (lazy, crossed eye) and if corrected early, this can be no big deal, but waiting too long can cause his brain to never develop binocular vision correctly, so it kind of pisses me off that this ped is being such a dick about an obvious problem, especially with my history. He treats D and I like po' lil disabled welfare cases and asks stupid, irrelevant questions about D's disability. Now, with D's foot amputated, I don't even want to get into it with him. So I've asked D not to go this time so we can actually concentrate on the PATIENTS, my kids. He talks too much about stuff I already know, and listens to little about my questions. It is also interesting to watch him examine both kids because he is not thorough at all and he will do different things to each kid. (Like listen to Naim's heart and look in Aaron's ears but not do both to both.) This drives me insane. We had a nice woman pediatrician at first, but a scheduling conflict in the beginning sent us to this guy in the same practice, and now we can't get our other woman back for some stupid insurance reason. This guy is condescending as hell. I knew we were in trouble the first time we met when he came in to the office and said, "Oh! You guys don't look that bad. I was under the impression--they told me on the phone--that you were a quad and you were deafblind. You obviously aren't that bad off. You can take care of the kids alright?"

Every time I hear this question --a lot-- I always want to say, "Well, you know what? By golly, we really found that we couldn't. We gave our disabilities no consideration when planning to have children and we had no idea what we we're doing, and by God, the kids died of a combination of dehydration, kidney infection, and being drop-kicked down the stairs three days after we brought them home. Oh, these healthy kids right here? Oops! Don't know where they came from, I'm so blind and dumb I must have accidentally tripped and fell over these kids and then when D was trying to help me up, we inadvertently got them stuck to D's wheelchair and well, we just decided that since we killed off the first set, we'd try our hand at two more."

Or something like that.

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Speaking of that kind of shit...I never introduced you to our two cats. This is mandatory on the Internet, no?

The pediatrician story reminded me of the cats because when D and I went to an animal shelter to adopt a cat, they told us we couldn't have one because our disabilities created a danger for the cats. This was pre-children for me and it scared the bazeesus out of me because I thought I would never be able to have kids if I couldn't even adopt a cat.

Thankfully, there are plenty of orphaned kitties out there and we ended up taking in two.

Kai came from a lady who read my previous site and read the story about how this shelter wouldn't approve us for cat adoption. Her son was doing a Bar Mitzvah volunteer project by fostering kittens for another shelter. Kai and some other kittens had been found in an abandoned apartment with their presumable mother dead in the driveway. Kai and siblings went to a surrogate momma cat for nursing, but all died anyway except Kai. I took him before he was weened at about four weeks old and had to hand feed him baby formula. Kai is now two and a half years old and a bossy old guy who only lets me and D pet him and doesn't have anything to do with the kids except act especially annoyed whenever he sees them.

(I'm obligated to show before and after shots of Kai in case that bigotted quasibureaucrat wannabe from the shelter ever happens by this site. Take a look at the kids too while you're at it, beeotch.)

Scrapper was found as a kitten under the side of a house in my sister's neighborhood in Kansas. My sister and some other neighbors had a feral cat problem and were basically trying to do spay and release with all of them, but didn't get that underway until about three litters had been born. Scrapper, who had respiratory infections, ringworm, and herpes of the eye, stayed on a neighbor's back porch with up to 30 other cats and kittens. All the kittens got adopted and all the feral cats got spayed/neutered and released. Scrapper did not get adopted because she was always sick and she is also at least partially blind. Finally, my father agreed to fly her on a plane out to me. He does this with Abbey all the time, but Scrapper literally beat the hell out of him and the flight attendants. By the time she arrived in Portland, my dad had band-aids all over his hands, scratches all over his arms, and the carrier she was in was completely busted and taped together with airport supplied duct tape. She even got through the duct tape and my dad had wrapped his coat around the whole carrier to keep her in for the drive to my house from the airport. Although blind, Scrapper is obviously very healthy now, but my dad still bitches that he should have dropped her out of the airplane.

Scrapper is very sweet and lovable and playful. But she is a little bit on the not too bright side. Partially because of her vision, and partially because she is an inbred hillbilly cat, she gets herself in all of these predicaments that I've never seen other cats get into. She gets stuck everywhere and can't figure out the obvious way out. When I was seven months pregnant, she got stuck on the roof of my house (she broke through a window screen) and I had to beg a nearby construction worker (in my bestest hearing impaired lousy Spanish) to get her down. And, My HERO, he did.

When we moved, we tried to separate Kai and Scrapper. D wanted Kai, but not two cats. But Scrapper couldn't survive well without Kai to help her and had all kinds of anxiety. So they both moved to D's, with the idea that after I gave birth, I would take them both back. Now, it's been almost a year and he will not give my cats back to me!! So they don't permanently live over there, because we don't talk in those terms! But we have yet to execute a plan where they return. I see them nearly everyday, anyway, though.

***************

Put a few more pics in the album. They say at this age, kids will choose a bankey or a lovey or some kind of security toy. Well, my son, Aaron has chosen...a wagon. He rolls around with this wagon everywhere and wants me to haul it up and down the stairs for him. He gets upset if its not in his room when he sleeps at night. (I draw the line at putting the wagon in the crib with him.)

He doesn't understand that we are not a four wheel drive family. We are pedestrians. We do not horde large transportation vehicles. We live with only what we can carry on our backs. We will not be dragging that damned wagon to the store or on the train, so PICK A BLANKEY LIKE A NORMAL CHILD FOR ALL THAT IS SACRED IN THE UNIVERSE!

***************

Off to bed now. Maybe John Schneider (the updated version) will visit me in my dreams even sans medication? Yeeeee Haw!

What the High-Holy Jumped-Up Fuck Are They Doing?

Yeah. What he said: A Violently Executed Blog.

About this:

(Straight White Christian) Married Couples Only

Can't comment on this now, I have to get my poor, neglected and abused bastard children to bed.

Why Do You Think I Had Children If Not to Make Them My Servants?

Ha! Ha! Developmental milestone just happened for Aaron. But, first, some background:

D and I had different childhoods in that he did not have much responsibility contributing to household tasks and I did. He laughs at me because I don't remember a time when I didn't do laundry. Even as young as two, I remember my mother setting aside the washcloths for me to fold into fourths. By the time I could reach the controls on the washer and dryer, I was responsible for my own laundry. D keeps kidding me that I will be having my kids do laundry before they can walk.

Well, yeah. Today that happened.

Aaron was being a pest while I was taking the baby clothes out of the dryer and trying to fold them up. He was trying to disassemble the vacuum cleaner and then standing in the doorway of the dryer and trying to climb in. So I started having him hand me items from the dryer for me to fold, and he did it! And he thought it was great fun! It was actually helpful to me because I didn't have to bend down and get in the dryer for stuff and he was getting things as fast as I could fold them.

So the milestone is that this is the first time he actually contributed to the household. And yes, he helped me with the laundry BEFORE HE COULD WALK!

So stick that up your spoilt-rotten mamma's boy bein', no housework helpin', lucky to have a disability havin', cuz otherwise you're own laundry you'd be doin', lily white ass and smoke it, D!

Where's the Outrage for MY People?

I'm a few days behind on my reading, but I just came across two items in the past 1/2 hour that I found interesting.

One was a discussion on Metafilter where after an announcement was made that October was National Down Syndrome Awareness Month, a comment discussion ensued about the option to abort fetuses found to have Down Syndrome to end their "suffering."

Another was this comment by William Bennett. Yes, he's the guy with a gambling problem who espouses 'virtues',  and who stated that if all black children were aborted, the crime rate would decrease.

Okay.

First of all, this is not about abortion. This is not about each individual  woman's right to choose vs. the right to life of each individual unborn fetus. Abortion is just a convenient way for these people to determine that an entire group or class/race of people should not exist for the betterment of themselves or society.

The Bennett case is cut and dry bigoted idiocy. It's too repugnant on so many levels to respond to. And I've seen an outcry on the Internet of people who feel the same as I do. Obviously, no matter what the crime rate statistics are in this country, or how they can be bent to serve anyone's political agenda, everyone can (or SHOULD) recognize that a person's race does not inherently cause them to be criminals. There is nothing in the chromosomes of a black fetus that predisposes that fetus to crime. As we all know, race isn't even a genetic factor and doesn't exist in science, it is a socially invented phenomena. The problem of crime and the number of convicted black people in prisons in this country is a dynamic, societal problem that we are all responsible for. Only the most bigoted of us would actually believe that criminal activity is inherent to blackness and thus all black children should not be born because of it. Not surprisingly, people throughout the Internet world are outraged at Bennett's insensitive remark.

When we turn to the discussion of aborting fetuses diagnosed with Down Syndrome, we don't get the same outrage. It turns into a philosophical discussion that bypasses the idea that it might be okay to have people with Down's in the world,  because, of course that is bad. The discussion always leads to the conclusion that yes, they should be aborted, but if a woman is opposed to abortion on moral grounds, well, than it is okay for her to have the defective child and God Bless Her for taking care of a disabled child. For everyone knows and understands that people with Down Syndrome are an unfortunate lot that shouldn't have to suffer through such a poor quality of life. Here, people do see an inherent problem with the fetus. It is right there in the chromosomes. An extra 21st chromosome is what identifies a person with Down Syndrome. But is the reason that individuals, families, and society suffers at the hands of those with Down's really inherent in the person with the disability? Or is society responsible for a larger role in the suffering caused by disability? Just as complex issues in society affect the crime rate and imprisonment rate amongst blacks, so does society carry a large burden upon the suffering of those individuals and families with disabilities.

The prejudice and ignorance on the Metafilter site was amazing. Someone predicted that individuals with Down's only have a 25 year life span and suffer greatly during those 25 years. This is untrue. Some people with Down's syndrome are born with heart problems and esophageal problems. Most can be corrected with surgery during the first years of life. Thirty or forty years ago, the life expectancy was shorter. Part of this is because of advances in medicine. The other part was because doctors REFUSED TO OPERATE on Down's children. They were sent straight to institutions to die. Now that did cause suffering to the individual, but was that suffering caused by Down's itself or societal prejudices against those with Down's?

There is also an assumption that if you have a cognitive disability, you're quality of life is very low. I think this is amusing when people say this. If, for practical purposes, we use the Bell Curve to estimate the overall intelligence of the population, we know that most of us are somewhere in the middle and there are at least a couple of standard deviations worth of people out there who are smarter than any one of us. Does that mean that our quality of life is so poor in comparison to those smarter than us that our lives aren't worth living? Because that is what we are talking here; individuals whose cognitive scores may be two standard deviations below the average person. I want to ask people if they've ever met and gotten to know a person who has cognitive disabilities. Or are they just going by the one or two they've seen on TV? It would be the same as judging all black people as criminals because that is all you see on TV.

A few people commented on Metafilter that they know so-and-so with Down Syndrome who has their own apartment, job, and is a very happy, well-adjusted person. Another person commented that, sure, there may be a few examples of people with Down's who thrive, but those are the exceptions and he/she is sure that there are "many, many more examples" of those that are suffering miserably. I wondered how this person came to this conclusion? What makes a person with Down's suffer? Is it things like being denied medical care? Or being forced to live in an institution? Or being discriminated against when wanting to work at jobs that you are qualified to do? Or being treated rudely by the public? Because these things are societal, they are not inherent to having Down's.

I wondered if I would feel different about abortion rights once I became pregnant. If anything, pregnancy made me a stronger advocate for a woman's right to control her own reproductive status. Both for the reasons I mentioned before and also because I thought, "What if the government took away women's reproductive rights but it went the other way? What if they MADE women have abortions because their child was disabled or the mother was disabled, or black, or poor, or some other cast-off of society?" Think that sounds ridiculous? Well, it is not too far off from forced sterilizations and genocide that still go on today.

What if the genetic lottery was such that if a white family's great-great-great-grandmother was black, then out might pop suddenly a dark-skinned baby? Would it then be okay for them to abort because of all the suffering that blacks go through that they don't feel prepared to deal with? Or would we expect them, like we expect from adoptive families that adopt across races, to educate themselves and make sure they support that child's individuality?

This post may seem contradictory in that it is both pro-choice and anti-abortion of fetuses with disabilities (which, by the way, approximately 90% of prenatal diagnosed Down's Syndrome babies are aborted), but it is more about looking at your own prejudices and bigotries when making such a decision. What is known in the public at large about life with a disability is full of myths and ignorance and bigotry. Decisions should never be made on such factors.

Sign, Sign, Everywhere a Sign

I guess it is time to do the obligatory post to explain my disability. I don't mind, it's just that I have to explain it 30 times a year and it gets old. I want to write further about my career and possible future career; and it will make more sense to you if you understand the context of my disability a bit better. First, I'll explain in functional terms and then I'll tell you the possible etiologies because there is more than one and I'm not lucky enough to have a one word disease that everyone is familiar with. So here is the rundown:

Hearing

Currently I have a severe sensorineural hearing loss that reaches into the 70 dB to 80 dB threshold ranges. That means that a tone in a given frequency that you might hear at 10 dB, I don't hear until it is turned up to at least 70 decibels. I wear Phonak Claro 311 BTE hearing aids with a built-in FM system. These are pretty high tech and cost about $6000. And no, insurance doesn't cover hearing aids. The FM system is a receiver that is built-in to my aids, then I have an external mike that is about the size of a small remote control that I can mike an individual speaker with and that person's voice is amplified into my aids while shutting out other noises. It is great for a large, classroom setting or a conference type meeting. I have also used the FM system as a baby monitor by placing the mike in the babies' room and then I can go around the house and still hear them. Functionally, I do okay in a quiet room with someone I know well. When you get me out into the world, I struggle, A LOT, to communicate. I do know sign, but am not culturally deaf, so I don't use it a whole lot. I would say I'm proficient but not fluent. I am teaching the kids some sign, though. I can talk to some folks that I know well on a amplified telephone. Or I also sometimes use a TTY. Mainly, I do a lot of email and instant messaging, though.

Vision

Ugh. Hard to explain. Vision loss is a dynamic thing. It's not linear like I can just tell you my acuity and be done with it. So here's the best I can do. In my left eye, I have severely limited field and central vision but can see a bit of blurry stuff out of it. I had a retinal detachment when I was 14 and since then, I have not really used this eye at all. In fact, when it became my only usable eye this past year, I would see things and not even recognize what I was looking at. I would see a pencil and my brain would go, "I know I know what that is...but what is it?" My right eye was always my better eye until this past retinal detachment I had when I was pregnant. When I was growing up, I had a series of eye surgeries (I think I counted once that I've had 23 surgeries overall, but I can't remember which is which anymore.) When I started college, I could not read out of my right eye. Then I had a surgery before my junior year, and I could see to read a regular book, just lying on my bed for the first time in years. Since then, the vision in that eye slowly got worse until last November when I lost it all. Then, I had a second surgery in April and got some of it back. In a way, better than I had before. But in other ways, not.

I have no lenses in my eyes due to past surgeries. Lenses are what enable your eyes to focus on things both near and far. Without lenses, glasses do me no good because it only makes one point clearer and everything else is still unclear or worse than it was to begin with. So I have not worn glasses since I was a kid. (And boy, when I did wear glasses, I wore GLASSES!) After my recent surgery, the doctors convinced me to again try glasses for my right eye and I agreed. So now I have these glasses that are bifocals. The near or lower part of the bifocal is supposed to help me read but to tell you the truth, it does me no good. The upper part is for my distance vision and it helps an amazing lot. I can see further into the distance than I ever have been able to before. However, I can't see anything close up, so all the things I do, like eating, taking care of the babies, etc. I can't use my vision much for and the glasses are no help. So I often only wear them when I'm outside walking or something.

Although I still can't see well enough to drive, and never could, I am starting to notice things that I never used to notice. Most noticeably, signs. There are signs EVERYWHERE. I can't even see them all, but of the small percentage that I can see, I've come to this conclusion: Sighted people don't hardly ever have to think. Don't listen to the cars going by and try to get down the traffic pattern before crossing the street, just watch the little red hand turn into a white walkie guy. Don't bother memorizing where things are in the grocery store, just look at the signs. Don't bother trying to pay attention to whether you are going North, South, East, or West, just look at all the street signs to give you clues. Lost in a building? Don't bother trying to estimate how many doors down room 326 is, just walk until you see the signs. A sign will tell you which way to run on the track at the gym on which day. Which train stop you are at. Which one is the women's restroom. Its not like I didn't know these signs were there before, but now that I can actually use some of them I realize that sighted people must just be able to go around and not have a thing stored in their heads. I have massive, massive amounts of data stored in my head. Everything from how to use the ATM machine without seeing it by memorizing the steps to get my money out, to always, ALWAYS knowing my cardinal directions and how the streets lie. So I either think that if I were totally sighted I would either have so much spare brain space that I would be SMARTER THAN GOD, or I would have wasted so much brain space that it would have atrophied and I would be a dumb shit. I dunno, no offense, but y'all got an awful lot of signs out there telling you what to do.

Anyway, so my vision today is, left eye, not too useful at all, right eye is useful for what I call travel vision. Somewhat useful at getting around the house vision (cooking, diapering, etc.), and not useful at reading. I also don't have, and never had binocular vision. This is when your eyes work together to create one picture and also  allow you to determine depth. Supposedly I have no depth perception, but I don't understand what that means, really. But I was really shitty at ball sports growing up, so there you go.

Kidneys

I have chronic nephritis and proteinuria and hemoturia. This basically means that my kidneys are working at about 50% right now and I have some protein and blood in my pee all the time that shouldn't be there. Most of the time this is not a big deal. But I do have to watch for infections and kidney stones and get monitored. I may be on a path for a kidney transplant or dialysis, but so far I'm doing OK and it probably won't be for 10 or 20 years maybe. Mostly I think my kidneys affect my energy levels and my immune system. I have at times had to go on Procrit, a drug that helps your blood make red blood cells, because my kidneys affect the rate at which my body will make them.

Etiology (or why am I so fucked up?)

In short, I don't know. All of this I was born with, although it was less severe at birth and has gotten progressively worse through the years. My mother took me on a tour of major research hospitals when I was growing up. Stanford University suspected Retinitis Pigmentosa. At the University of Iowa it was Usher's Syndrome. At Johns Hopkins, it was Stickler's Syndrome. At the University of Kansas, it was Alport's Syndrome. Just recently at Casey Eye Institute, it was none of the above. They theorized that it was because I was born at 44 weeks gestation and they now know that the placenta malfunctions if pregnancy goes much past 40 weeks. So I don't know the cause and I don't know the prognosis, although I can tell just by looking at my history that it all seems to be slowly progressive.

When I graduated from high school, I attended a rehabilitation program for the blind in Nebraska. It was modeled after the National Federation of the Blind philosophy which is quite progressive. I wore blindfolds for 8 hours a day and did everything as a totally blind person would. I learned some Braille, computer, traveled throughout the city with a white cane, cooked and sewed, did carpentry, and whatever else they made me do. This gave me the confidence to know that there are ways to do things no matter what your vision is, and I can transfer that to hearing as well. I have always believed that disability is a natural part of the human condition; something like 85% of us will spend part of our lives with a disability. (The rest of us just drop dead before we get the opportunity.) The problem with disability is not so much the medical and functional aspects of it as much as the social barriers that people put in place. In my past lives as a teacher and hospital worker, I always found very effective ways to accommodate my disability and never had any serious problems with job performance. My problems were mainly when, no matter what I did, someone did not want to believe that I was doing my job just as well as others. I'm not saying there are not real functional obstacles when hiring someone like me, there are. But so often I have not even been allowed to try. I would be the first one to say, I don't think it's safe for me to be doing this task, and then trade tasks or work something else out. But often, I'm not even given the chance, and that is the hardest part about being disabled.