A short status report

1.) We've fought off a pesky cold bug that made its  mucusy rounds in the neighborhood. Its visit coincided with that of Uncle Awl's, whose presence was decidedly more welcome and a great deal more pleasant and fun.

Uncle Awl in his signature black and Izzy in her Beastie Boys outfit

2.) We celebrated uncle Awl's birthday by going on a whale-watching trip, but the blue whales were a no-show, again. Fortunately, we can always count on the dolphins to grace us with their gregarious presence so our excursion didn't end in complete disappointment.

Izzy buried under five layers, like someone who was dressed by a Hungarian mother

3.) We attended the annual whale parade, which took me one step further to achieve complete acculturation

Izzy's face lit up with glee when Daddy showed up with a gigantic whale balloon 

4.) Izzy started taking the bus to school and since I didn't run after the bus crying nor did I need a brown bag to breath into, we can declare the operation a success.

Izzy is behind the window furrowing her eyebrows and tapping on the arm of the wheelchair

5.) Aunt Jenn is coming tomorrow to spend her spring break with us and I am more excited than all the members of an Oprah show audience combined

Yepp.

To me...

...retarded means that you don't get to hold your newborn daughter after a day-long labor because she is rushed to the intensive care unit in the midst of nervous murmur.

Retarded means that a group of doctors shows up at your hospital bed and you know from their awkward stances, smile-less faces and pitying looks that your world is about to fall into little pieces but you try to hold it together as the list of grave medical terms penetrate the heavy silence in the room. 

Retarded means that someone is less advanced in mental, physical and social development than is usual for one's age and they have to work extra special hard to achieve the things that come naturally and effortlessly for others.  

Retarded means that you immediately throw away all the promotional material mailed to you by Carter's and Huggies and Pampers and their ilk because they never fail to cheerfully remind you of the developmental milestones that your baby is missing right now. 

Retarded means that instead of play-dates and birthday parties, you attend medical therapy sessions and doctor's appointments.

Retarded means that your baby can't sit, walk or run around on the playground, can't eat by mouth, and has an implant that keeps her out of a state of constant seizures.

Retarded means that your daughter cannot tell you what hurts while grinding her teeth in pain and you will never hear her say the words 'I love you'. 

Retarded means that someone can hurt or abuse your child in your absence and you have no way of finding out about it.

Retarded means that you spend many sleepless nights staring your dark thoughts in the face, worrying about your child's future, wondering who will take care of her after you are gone, while tears of despair running down into your ears. 

Retarded means that you don't find it funny when cognitive impairment is used as a punchline and it breaks your heart when people with developmental disabilities are mocked.

Retarded means that you cringe every time someone uses the word 'retard' to express self-depreciation or derision and you feel isolated when everybody around you laughs at a "retard"-comment.  

What retarded doesn't mean is  that someone is clumsy, forgetful, pathetic or despicable.

Of course, you have the right to use it that way thanks to our freedom of speech, just like you have the right to use the terms 'nigger' or 'honky' or 'gringo' or 'chink' or 'dago' or 'shiksa' or 'yid' or 'raghead', but it is offensive and demeaning.

It has nothing to do with the first amendment or political correctness and has everything to do with human decency.

Today, March 7, is the annual Spread the Word to End the Word Day, and while I don't believe in banning words or thoughts or mean-heartedness, I wanted to let you know that using the word 'retard/ed' in a derogatory way hurts, regardless of your intentions.



My previous musings on the topic:


http://ourhummingbird.blogspot.com/2011/06/retard.html


http://ourhummingbird.blogspot.com/2011/08/long-post-about-freedom-of-speech-for.html

KONY 2012

Please watch this video.


KONY 2012 from INVISIBLE CHILDREN on Vimeo.

Morning

I woke up at the crack of dawn to a blow in the face precisely executed with a little elbow, a subtle indication that the Bean was ready for her breakfast, but after five sleepless mucus-ridden nights I was just happy that I had spent some time in REM sleep and I hadn't had to play ER in the middle of the night so I didn't even mind the surprisingly strong stroke of the small elbow in my face and with the grace of a drunken zombie I staggered out into the kitchen to prepare the food and the medications where through the early morning head-fog I noticed that last night's chill still lingered in the air and the sun hadn't come up yet to break the silent darkness that cozily covered the evergreen land outside so there was no background noise as I carefully pulled the Vimpat and the Keppra and the Prevacid into small plastic syringes but then the stillness of the morning was shattered by the Bean's cough, that dreadful kind that would make a beefy alcoholic smoker proud, and it was my cue for grabbing the venting gear to let the air out of her tummy and after freeing her from some explosive bubbles and some sluggish mucus and suctioning a sea of secretion out of her tiny nose, the coughing subsided and I was finally able to feed her breakfast. 

The second day of school

I really don't care for Valentine's Day; or rather, I should say I don't care for the surrounding commercial hype that either makes you feel bad for being single or puts pressure on you to spend money if you are in a relationship. I don't have intimacy issues and I fully support people's rights to express their romantic feelings for each other in various ways, including the exchange of heart-shaped balloons and stuffed animals manufactured in questionable Chinese factories, I just don't like to be pressured or manipulated into anything. However, our quirky habit to express our romantic love in memory of the murder of some obscure  Christian martyr served me well yesterday, when Izzy's  First Day of School coincided with the Valentine's Day Dance to which all parents were invited. Therefore, after emphatically asking Phil not to get me anything for Valentine's Day (since he gets me flowers and chocolate regularly on non-Valentine's days), I turned around and attended the Valentine's Day Dance with great enthusiasm. Of course commemorating the murder of some obscure Christian martyr with balloons, heart-shaped decoration an a merry festivity is a perfectly reasonable affair when it involves a group of adorable little kids with all kinds of disabilities and special needs and gives me the excuse to spend an extra hour with my daughter on her first day of school. Since we are easing Izzy into her new school career and she only spends three hours in class the first couple weeks, I was allowed to spend the remaining time in the school's lobby. I vowed that I wouldn't cause any disturbance and then happily sat in the hall while Izzy had circle time with the speech therapist and worked on some Valentine's Day craft project. She was all smiles when she came out of the classroom with glitter on her face. My assessment of Izzy's teacher was correct: she is indeed a fairy godmother, and I'm wondering to whom I can talk about possibly cloning her. While Izzy was in her reserved observation mode yesterday, her shyness greatly decreased today according to the official sources, which was also confirmed by my informants. When I picked the Bean up during lunch break, she had a ginormous smile on her glowing face, she was sitting up straight in her wheelchair beaming contentment, vocalizing and making happy sounds. I had about an hour and a half at home before I had to return to the school to bring Izzy home, and I spent the first couple minutes aimlessly wandering around, wondering what I should do with all this time that I suddenly had for myself. It was just enough time to call our insurance company to sort out some issues. I really know how to have fun. 

First day of school

School

I spent yesterday vigorously cleaning the house and baking Hungarian cheese biscuits and cinnamon roles while Izzy had fun on the beach with her nurse, not so much because I'm a domestic goddess who uses her respite hours for household chores, but because I needed the distraction and the self-soothing comfort of the repetitive motions these activities offer. Izzy is starting school on Monday, which is wonderful and I'm really excited for her between the sudden anxiety attacks that come over me when I think about it. We will ease her into the school routine and start out with short days so for the first couple weeks I will walk her to school and pick her up. The school is at the same location as the facility where she has been receiving physical and occupational therapy since before her first birthday and it is a wonderful place with a wonderful staff. 

Last week we had our first IEP meeting (i.e. individualized educational program, for the uninitiated) to establish the goals and services for the year, and while it was a heavy duty one with 15 attendants, it went very smoothly without any bloodshed. I felt blessed to be able to send Izzy to a school where I can not only trust the expertise of the staff but I can also trust that they want the best for my daughter. Izzy's teacher dropped into the meeting to introduce herself and she was this fairy godmother with a golden aura and an air of mischief about her. You could see twinkles in her eyes and hear her wings softly flap when she talked about her class. So, Monday morning, I will load up Izzy's wheelchair with her new bumblebee-bagpack, portable suction machine, binoculars and camouflage equipment, the latter two are for my hideout in the school parking lot. 

Happy Birthday, Izzy!

Meet Chris Langan

Meet Christopher M. Langan, bouncer/Smartest Man in the World:

Langan's off-the-chart IQ cannot be measured with conventional standardized tests; it can only be estimated with experimental high-ceiling tests, which put his IQ at between 195 and 210. He began talking at 6 months, taught himself to read before he turned 4, and he used these early-acquired reading skills to learn about Egyptology as a young child and to explore the writing of Dostoyevski, Darwin, Russel and Einstein in his early teens.  While he never finished college, he did develop his own theory of reality, which he calls a "Cognitive-Theoretic Model of the Universe" (CTMU). 

In the USA, the median score is a 100 on standard IQ tests, but different groups have a different average score, for instance, it is 115 among college graduates. A score between 90 and 110 indicates average intelligence, a score above 130 indicates exceptional intelligence and a score below 70 usually indicates a mental deficiency. The difference between a person with average intelligence and a person with an intellectual deficiency is about 35 points, while the difference between Langan and an average person is a 100 points. So even if you have an exceptionally high 130 IQ, the difference between Langan's score and yours is 70 points, which is twice as much as the difference between someone with average intelligence and someone who is labeled with "mental retardation". 

It must be extremely frustrating for Langan to live his life among people who are vastly inferior to him intellectually, so no wonder he tries to remedy this situation. In an interview, Langan espouses genetic engineering and suggests placing genetic control over "human breeding":

"People who wanted to have children would apply to make sure they have no diseases. Why do we have to do it through genetic engineering? Well, we have to let only the fit breed ... Freedom is not necessarily a right. It is a privilege that you have to earn. A lot of people abuse their freedom and that is something that people have to be trained not to do."

When asked who would be in charge of this training, he volunteers himself. But before anybody becomes too indignant, I would like to point out that apart his gigantic IQ, Langan is not terribly different from those who believe that you can take away basic human rights based on someone's intellectual ability. The same sentiments lie at the core of his reasoning, he just has a higher standard for "personhood"that are in proportion of his own cognitive abilities, and eugenicist ideas feel different when you are the one who is considered inferior. If he gets his way, "average" will be the new "retard", so you might wanna get your breeding and your medical needs taken care of soon, in case he decides to run for president.

Except for his creepy eugenicist ideas, Chris Langan seems like an amiable, pleasant person and his brilliance is undeniable. Enjoy the video.

My further pondering about personhood and human rights

I think I have disclosed before on the pages of this here blog, that I have some masochistic tendencies that manifest themselves in various ways, as in using an epilator that yanks unwanted hair out by the root as well as reading the comment section of disability-related articles, even though I’m fully aware what kind of bigoted comments I have to wade through. After the Amelia Rivera transplant controversy set off an Internet wildfire, it made it onto the pages of Huffpost where it inspired a vast amount of comments - and of course I couldn’t resist peeking at them. I had been able to stomach only so many comments before I got the urge to pack Izzy up and move into the woods or some other uninhabited location, far away from any human settlement.

As I have read many comment sections after many disability-related articles, I am fairly familiar with the recurring themes and arguments; therefore, while the prejudice-laden comments disturb me, they don’t surprise me anymore. I don’t get shocked at the openly hostile comments, nor am I astonished at the ones that fancy themselves compassionate and claim that if a parent truly loved his or her disabled child, then s/he would not “make” that poor little angel suffer, but rather let the poor little angel die. (These closet involuntary euthanasia advocates never elaborate on how exactly they would stop this nonstop suffering of our special little angles; hence, I don’t know if they suggest we put a pillow over the special little angels’ heads or just drop them off on the highway.)


This time around, however, I did stumble upon a comment that startled me, though not because it contained a new sentiment or idea that I hadn’t encountered before. While arguing against the transplantation, a commenter brought up the question of ‘personhood’ and Mary Anne Warren’s oft-quoted criteria for qualifying for it, namely sentience, emotionality, reason, capacity to communicate, self-awareness, and moral agency. Warren’s 5-point measure of personhood was constructed in support of her pro-abortionist argument that a fetus has fewer rights than a fully developed human. While the question of personhood has come up in debates before concerning profound disability (see growth-attenuation, involuntary euthanasia and infanticide) and Warren’s criteria have been cited by those who argued that profoundly disabled individuals should not have the same fundamental rights as other human beings, I was startled by the comment because of its context and the disability level of Amelia Rivera.


When I wrote this post and this post a couple years ago, and I named Peter Singer one of the most dangerous men on my dangerous-man-list (a close second to Gargamel), I did not expect to encounter his utilitarian ideas regurgitated among the misspelled, punctuationless comments at Huffpost, in connection to a young child whose disability is not profound. Bioethicist Peter Singer believes that parents of disabled infants should be able to kill their disabled child if it gives way to another, nondisabled, happier baby and thus increases the total happiness of the parents and all the parties involved. At the same time, he argues that various animals are rational, self-conscious beings and it is morally wrong for humans to put themselves above sentient animals. Singer regards the notion of the “sanctity of human life” as a vestige of the outdated Judeo-Christian tradition and calls it “speciesism. In other words, Singer contends that human beings who are incapable of self-awareness, remembering and reasoning, such as newborns, babies, Alzheimer and dementia patients, and people with profound intellectual disabilities are not persons, while sentient animals like dogs, cats, pigs and dolphins are.


But even Peter Singer, who believes that it is not intrinsically wrong to kill an infant and it is morally less condemnable to kill a dog than a disabled baby, believes that infanticide may be wrong if it has a negative affect on the parties involved and that it should be the parents who decides whether they want to kill their child. A third party making decisions that violates the so-called “nonperson’s” rights against the parent’s will directly contradicts Singer’s utilitarian philosophy, since it would clearly decrease the amount of the total happiness of the interested party. I also would like to quietly mention, that Peter Singer’s philosophy is not only flawed and contains inconsistencies (like the question remains why he would only restrict infanticide to severely disabled infants when he sees abortion and infanticide oncologically the same and he doesn’t restrict abortion to severally disabled fetuses), his actions are inconsistent with his own views when it comes to his mother who is suffering from Alzheimer’s Disease and according to Singer’s criteria, doesn’t qualify as a person.

If we believe that personhood is not inseparable from our humanity and we set up a list of criteria one needs to meet to qualify as a person, we end up on a dangerous slippery slope. As the Huffpost commenter demonstrates, the criteria originally created by Warren to prove that fetuses are entitled to fewer rights than their mothers can be expanded to limit the fundamental rights of profoundly disabled individuals and then further expanded to discriminate against higher functioning disabled children against their parents’ will.


Throughout history, people experienced unjust and unequal treatment due to their ethnicity, race, religious background, sex, age, and various other characteristics that the majority group arbitrarily considered inferior. Societies that considered themselves too cultured and too civilized to operate by the laws of the wild and the animal kingdom (where the strong rules and the weak is eaten) felt the moral need to philosophically justify the unequal or cruel treatment of an oppressed group.

For instance, Aristotle made an attempt to justify slavery by claiming that some people were born natural slaves because they lacked certain qualities, such as the ability to think properly, and thus needed someone to rule them and tell them what to do. Aristotle likened these “natural slaves” to domestic animals and he claimed they were only fit for physical labor. Southern philosophers argued that the transatlantic slave trade was morally acceptable since slavery was part of the natural world order and slaves were inferior beings who had no legal standing as a person. Social Darwinism was used as the intellectual justification for oppressing black people and women, who were regarded as biologically inferior.


If we believe that someone’s right to life and equal treatment depends on their intellectual ability, than how does our thinking differ from those who endorse slavery or oppress women or treat a people group unjustly because they consider them inferior? If we dismiss the sanctity of human life and deny that people have inherent value then what basis do we have to advocate for the kind, just and moral treatment of a human being, or sentient animal in that matter, if you are Peter Singer.

Non-person humans and non-human persons

I've been comfortably curled up under a rock, engrossed in Izzy's transition into the school system and all the meetings, assessments, evaluations, administration and such that it involves, while pretending that the world ends at the borders of sunny Orange county and it is not full of closet-eugenists and other humanoids who think that people with disabilities are God's punishment to women , that there are no doctors who would refuse to perform a kidney transplant on a child due to her cognitive disability and that there are no Huffpost-commenters who believe that people with a significant cognitive disability shouldn't even qualify for personhood but instead have the status of a "nonperson human."

But then last Friday, my dear friend Elizabeth sent me a link to this blogpost in which Chrissy Rivera recounts how she and her husband were told by the transplant team of Children's Hospital of Philadelphia that their 3-year old daughter, Amelia, was not eligible for a kidney transplant solely based on her "mental retardation", even though the family was planning on donating the kidney and was not looking to get on the waiting list and thus compete with not-mentaly-retarded 3-year olds. I was going to write about this story on my blog on Friday, but I was too enraged to come up with a balanced commentary and I was afraid I would end up with a diatribe. So instead, I just posted it on my Facebook page, e-mailed it to some people, signed the petition, ranted to Phil, had him sign the petition, ranted to Phil some more and waited for my anger to subside. I was still waiting when I read this comment posted on Elizabeth's blog, a comment that was originally posted at Huffpost, a site I was intentionally avoiding in hopes of staying under my rock a little longer.


The comment contained some controversial statements about Amealia Rivera's case and about people living with disabilities in general. While this commenter agreed that the Rivera family should be allowed to donate their own kidney to Amelia, she questioned whether it would be in the little girl's best interest "as far as quality of life and being able to understand what and why the procedure is being done to her." In any discussion about disability, the question of "quality of life" comes up sooner or later, so it's not surprising that our commenter also brought up this wild-card argument while expressing her concern that "receiving a transplant could further diminish Amelia's quality and even length of life. Sometimes the kindest thing is doing nothing at all, as people often chose to do for terminally ill family members".


Apparently, our commenter assumed that Amelia's quality of life is poor due to her cognitive disability, so poor that a kidney transplant would make it worse than death, thus letting her die would be the kind thing to do. If the sole source of your knowledge and understanding about disability comes from Hollywood production like "Whose life is it anyway" or "Million Dollar Baby", in which disability is portrayed as a fate worse than death, I can see why you automatically assume that every person with a disability has a poor quality of life and why you think that they would rather die than endure such a fate. However, if you know an non-fictional character with a disability or you read the writings of disability advocates such as William Peace at Bad Cripple or Dave Hingsburger at Rolling Around In My Head, you probably know that there are a host of happy, well-adjusted, accomplished individuals living with a disability, whose quality of life is just fine thank you very much and who don't spend their days looking for someone to euthanize them. As a mother of a severely disabled child, let me also hereby reassure you that children with disabilities also can have a full, happy life and having an intellectual disability doesn't actually hurt or cause suffering, it's the reactions and attitudes of society towards it that is painful.


Like the attitude that our commenter demonstrates by stating that she would be heartbroken if she found out that someone with a disabling condition had received a lung transplant while her friend's 13-year old daughter had passed away while waiting for a donor. In other words, the life of her friend's daughter was more valuable and more worth to save than the life of someone with a disability, cognitive impairment or a degenerative condition. Designating different values to different people's life based on their physical fitness, mental capacity, or medical condition, comes dangerously close to eugenics, social Darwinism and Action T4 (the Nazi's eugenics-based so-called "euthanasia" program). "Lebensunwertes Leben" or "life unworthy of life" was the Nazi designation for the segment of the population that, according to their judgement, had no right to live, due to a disability, medical condition or racial background.


What also comes dangerously close to eugenics, social Darwinism and Action T4 is the distinction our commenter makes between "human" and "person" and her usage of the term "nonperson human" as in "persons have more of a right to an organ transplant than do non-person humans". She presents this distinction between "persons" and "non-person humans" not as a debatable philosophical construct but as a widely accepted scientific fact, as if she was discussing the difference between the clades of lizards and snakes. While I can see the urge to define "personhood" in a world where new bioethical questions emerge with the advances of medicine and biological research, designating a 'non-person' status to a human being is an extremely dangerous slippery slope which opens up all kinds of possibilities for violation of human rights. Any time in history, when the designation "person" was separated from "human" and it was not enough to be a human being to qualify for being a person, unspeakable horrors took place, like the Holocaust, slavery, and genocide.


During our Christmas break, since we are such a crazy fun bunch, we watched the BBC documentary series: 'The Nazis, A Warning from History'. This excellent production doesn't only chronicles the rise and fall of the Third Reich, but also explores the why's and how's, trying to find out how a cultured European nation in the 20th century could help Hitler rise to power and be responsible for the heinous acts that took place in Nazi Germany. The documentary contains an impressive amount of interviews with a wide variety of people who personally experienced the events of the Hitler-era. The interviewees ranged from plain civilians through regular soldiers to high rank officials in the Nazi Party and the Wehrmacht. I don't know which one was more shocking to see: how unrepentant and unemotional some of them were as they recounted some of the most horrendous events in history or how average and non-monsterous others were. They weren't soulless psychopathic Charles Manson like figures reeking of evil. One of the lessons to take away from this documentary as "a warning from history" is that Hitler and the Nazi Party didn't rise to power in a historical and cultural vacuum and the horrendous deeds were not committed by a handful of people alone. Rather, the Nazis' rise into power was helped by political, historical, economical, and cultural factors and their atrocities were made possible by masses of regular people who subscribed to the widely accepted philosophical ideas of their time. Also, the Holocaust didn't start with the gas chambers, it started with concepts, ideology, philosophical constructs that are not so different from the beliefs that many people hold today regarding the value of human life, the survival of the fittest and disability.

Finally a finished update with lots of pictures and a video

There are all these abandoned, unfinished updates sitting in my blog post list, failed attempts to keep you updated about the usual craziness going on around here. We've been very busy this past month with the various meetings, evaluations, assessments, appointments, phone calls and emails that accompany Izzy's transition into the school system, not to mention that they piled upon the regular doctor's visits, insurance dealing and miscellaneous medical fun that normally fills up our calendar. Well, actually, before you feel too sorry for us, for two weeks around Christmas we were mostly just busy having tons of fun with Phil's parents who spent the holidays with us. We had a wonderful Christmas with Mom and Dad, without any hospitalizations, medically induced comas, intubations or other medical dramas that seem to pop up around their visit. They departed last Wednesday morning (if you can call the ungodly hour of 4 a.m. such) to return to Hungary, and left a sad Bean and lots of homemade goodies in their wake. Izzy seemed a bit confused for a while and probably wondered whatever happened to the party and all the extra grandparental love and spoilage that she was showered with.

The Bean loved having Grandma and Grandpa in her immediate vicinity and had a blast hanging out with them. She wasn't alone, Phil and I shared her excitement about Mom and Dad' presence: it was the first Christmas in 4 years that we spent with family and we didn't take any of it for granted. Shortly after their arrival, my wonderful Mom-in-law quickly took over the kitchen, which met zero resistance from me, and not even 24 hours had passed before the fridge was overfilling with home made chocolates, cookies and various goodies. The only party that was unhappy about this arrangement was my butt: I think I gained a shameful 3 pounds in two short weeks. However, I'm not overly worried about it since I've spent the last couple days taking Izzy to different appointments, most of which entailed lots of uphill pushing of a remarkably tall almost-three-year-old. My little string Bean is 39 inches/99 cm tall and 34 pounds/15.5 kg, and pushing her uphill or lifting her a hundred times a day makes for a heck of a workout.

Yesterday the Bean and I had a durable medical equipment meeting to have the wheelchair adjusted to fit her super long physique and to confirm that the wheelchair has all the appropriate parts that make it suitable for transportation on the school bus. Izzy was also measured to determine what size of bath chair we need to order for her, since she can't fit into commercially available baby bathtubs anymore. Medical equipment needs to last for 5 years due to Insurance regulations so physical and occupational therapists have to possess psychic power to predict a 2-year- old's future measurements at age 7. Considering the fact that Izzy was 4 pounds 10 ounces and 17 inches at birth and somehow made it from not-even-on-the-chart into the 95th percentile, psychic power is not an overstatement.

A months or two ago, when we first measured Izzy for a bath chair, the Bean's occupational therapist thought that in order to be on the safe side, we should go for the medium size. She was understandably flabbergasted as she was gaping at Izzy's feet dangling off the medium sized demo chair yesterday, clearly needing a size LARGE. "Oh my other little guy still uses a medium" - Izzy's nurse cheerfully informed me when I told her about the freakish outcome of the bath chair fitting meeting. Her "other little guy" is a 14-year-old boy whom she's been taking care of since he was a baby. Izzy is not even 3 yet, for crying out loud.

So far Izzy has had assessments with the school's speech therapist, psychologist, physical therapist, occupational therapist, nurse and transportation guy and they were all lovely people. The big IEP (individualized educational program for special ed students) meeting will take place at the very end of January when we will discuss the results of the assessments and the IEP team will make their recommendations for placement and services. What else is new? We are getting more nursing hours, we get to keep our current Regional Center worker who is an angel and whom we love dearly, and Izzy is doing marvelously well lately with very few seizures. Since she's been on a break from the godforsaken seizures, she's been consequently making some good progress in physical and occupational therapy. She has also become more vocally expressive and opinionated and she starts crying and yelling when you take away a toy she is playing with or when you transition her against her will. I like it and I'm not one who discourages female feistiness.

Here are some new pictures for ye faithful, who haven't unfollowed or unfriended me yet despite my lousy blog keeping:

Bundled up during whale watching. Not because it was cold, but because she has a Hungarian mother.  Let's see if you can spot the child under all the layers.

Retaining three objects like a pro

Izzy wearing mommy's hat. So there, take that microcephaly. 

Izzy stuffing two pacifiers into her mouth, like a goofball. 

Izzy in her swing. The best Christmas gift ever. Thank you Grandma and Aunt Ann!

The Price is Right

Let's play "The Price is Right'. I will present a medical equipment below and you will have to identify its price. You can check how close your guess was buy scrolling down below the picture of the item. The prices indicated in the answers are offers by various online sellers and usually lower than catalog prices. If you get them all right and you are not a parent of a child with special needs or a therapist or someone who works with medical supplies, then please let me know, I would like to personally congratulate you. Enjoy. 

1. A feeder seat positioner and floor sitter wedge made out of a hunk of foam covered with plastic:

Answer: $154- $1080 (depending on seller)

2. A case of plastic bags for the Kagaroo Joey feeding pump (Case of 30):

Answer: $117- $314 (depending on supplier)

3. Jenx Monkey pediatric prone stander:

Answer: $2188

4. Special Tomato car seat:

Answer: $1270.06

5. Rifton pediatric bath chair:

Answer: $482

6. Kimberly Clark Mic-key button:

Answer: $140 - $349 (depending on supplier)

7. Kangaroo Joey enteral feeding pump:

Answer: $715 - $1220

8. Collection jars for suction machine (10 per case):

Answer: $12- $154

9. Mic-key extension set (a tube that attaches to the Mic-key button):

Answer: $19- $59

10.  Rifton SoloLift (for transferring without manual lifting):

Answer: $4740 - $5267

Medical supplies

Despite the fact that Izzy has three medical insurances (one private PPO and two government/state insurances), we have been paying for all her medical supplies out of pocket. It has been more fiscally beneficial to buy them on various Internet sites and pay full price than to pay the co-pays billed out by the medical supply providers. There is no restriction on the selling price of medical supplies and medical equipment; therefore, the markup on them is comparable to diamonds, around a 1000%. But while I can live without diamonds, I cannot live without medical supplies. Actually, I can, but my daughter can't. 

If we didn't have private insurance, the two state/government insurances would pick up the cost of Izzy's medical supplies, but since we have a private PPO, the supplier has to bill our primary insurance first, who may or may not pay for these items. Even if your insurance coverage includes medical supplies, not all medical supplies are necessarily covered, plus there is a designated amount that is payable for a specific item. 

While I usually think that insurance companies are in cohorts with the devil, I can't fully blame them for this policy of approved amount, considering the ludicrously high claims they receive from the medical supply providers. Understandably, they don't want to pay 500 dollars for something that the provider bought from the manufacturer for 50 dollars. Unfortunately, I don't have the luxury of setting an approved amount and I am liable to pay the amount that insurance doesn't cover. 

For instance, the approved amount for Izzy's mic-key button is $76.2, which might be a reasonable figure compared to the manufacturer's price, but a meager help when it comes to the $250-$300 charged by the medical supplier. Now, you can buy a mic-key button from online suppliers for as low as $135 +tax and shipping, and they still must make profit on it, mind you, otherwise they would sell chocolate or rubber duckies. Therefore, it is cheaper to forget the prescription and the insurance coverage and pay the full price online, rather than go through a medical supplier and pay the difference between the approved amount and the supplier's price. 

I have been told by a Medi-Cal representative that CalOptima (Izzy's state insurance) would pay for her gastrostomy tub, enteral supplies and whatnot, they would just need some paper work and a denial letter from our private insurance. The representative also told me, that if I order the supplies through a company or specialty pharmacy, they would take care of the paper work and the billing. So I gave it a shot and sent the prescription for Izzy's mic-key button, suction cups, and whatnot along the required paper work to a specialty pharmacy on Tuesday. They have been trying to figure out whether they can place the order for our supplies ever since. 

During our last conversation, the representative triumphantly informed me that she has finally got a hold of our primary insurance and since we met our deductible for this year, we can go ahead with the order, we just need to provide a letter of medical necessity and I need to fill out some paper work and send it back as soon as possible. I asked her, if CCS or Medi-Cal would pick up the co-pays and deductibles that our private insurance didn't cover but she wasn't able to tell me that. She thought CCS wouldn't but Medi-Cal might. I guess, since our private insurance didn't reject the claim and pays a part of it, Medi-Cal doesn't necessarily kick in? 

"So I might end up with a large co-pay, if Medi-Cal doesn't pick up the difference, right?"- I asked the representative. 

"Yes, we would bill you and you would be absolutely liable for the co-pays."

"I understand that I am liable for the co-pays, but I'm thinking, if Medi-Cal is not covering the difference, it might be more beneficial for me to continue buying these supplies on my own and paying for them out of pocket."

"Yes, it might be more financially beneficial for you"- she agreed. 

"Well, it's just a bit ridiculous that we have three insurances and I'm better off not using them."

Silence.

Food for thought for the holiday shopping season

"I want the consumers to be aware - that the workers have a hard time. We pay for this with blood and sweat. We toil and we sweat. And at the same time the companies never make a loss. I do not want you to stop buying - but you should know about our difficult situation."

The report of my death was an exaggeration

I'm still alive and well, living the exciting, glamorous life of a privileged Orange county housewife who doesn't have to work but can freely indulge herself in managing seizures, mucus, tube-feeding and therapies all day long, or have long, frivolous conversations on the phone with delightful insurance agents. I wish I could tell you that the reason why I haven't blogged for almost a month was my increased busyness due to Izzy's miraculous jump in development after her VNS implant, and I've been just too occupied with chasing her around on the beach, taking her to choir practice or riding unicorns over rainbows. Unfortunately, Izzy is still having more seizures than you would wish upon a child molester, usually hundreds a day, which continues to interfere with her development and my psychological well-being. On the bright side, the VNS keeps Izzy out of status epilepticus and it trains her brain not to seize. I also believe, that it was the VNS that kept Izzy from spiraling into 6 or 7 full-blown grand mal seizure on Saturday when she had a high fever. She stopped breathing, stiffened up, her eyes got big, her pupils got huge and she had a frightened expression on her face - they looked like the beginning of her big tonic-clonic seizure a couple months ago.

While not with the aforementioned utopistic activities, I have been busy nonetheless in the past months with house hunting and transitioning Izzy into the school system as she is turning three years old (whaaat???!!!) soon. The transition involves assessments and evaluations by the school's speech therapist, psychologist, nurse, developmental specialist, and janitor, who upon gathering information will all put their heads together and give their recommendations for Izzy's placement and IEP in January. Izzy has a long history of assessment-dodging: whenever she suspects that there is an evaluation of some sort taking place, she clams up and carefully hides all her skills. Since her special gift of skill-hiding has made me look like a desperate mother in utter denial before, I got smart and now I provide the person who is carrying out given assessment with accurate documentation. That is, I whip out my iPhone and make them watch video footage of my sneaky little Bean as she is being engaged in the various activities that she is refusing to demonstrate at the moment. Of course the godforsaken seizures just make matter worse and hugely undermine the evaluation process. It kills me when she has a seizure in every 10-15 seconds and her charming, goofy self is suppressed and buried under these evil electric brain storms.

As for house hunting, we decided to stay and keep renting the condo on the beach. I know, poor us. As all the foreclosed people moved into the renting market, the prices skyrocketed and went  from high to ludicrous. We did find a gorgeous rental that fulfilled all the criteria we were looking for but the $2550 price tag on a 2 bedroom 1.5 bathroom place made my buttcheeks clench. So I'm still dragging baskets of clothes to the outside laundry room and share the washers and dryers with the other tenants, that is if I remember to put money on the laundry card. On the flip side, I can still take Izzy down to the beach in 5 minutes, a beach that takes my breath away every time.

What else is new? Oh, the Bean is on a diet, because she has gone from black bean to kidney bean. During our last visit, the GI doctor showed me Izzy's growth graph, which was gently sloping upwards until July, then it drastically shot up in a straight line. My little Izzybee has gained 3-4 pounds since July, and if she continues to gain weight at this rate, she will quickly become obese. Because at 3-something feet she is also tall for her age, she is not overweight at this point, but nevertheless she is the size of a 4-year old boy. And while my growth graph also shows a slight upward curve, I'm still 5"2 and 109 pounds on most days, so my lifting power is limited. The GI doctor speculated that the VNS made Izzy's muscle tone more relaxed and she has stopped moving constantly, which consequently makes her burn less calories. Another factor is the cyproheptadine, the medicine that does wonders for cyclical vomiting, but at the same time is also an appetite stimulant. One of the benefits of tube feeding is that I am the one controlling Izzy's caloric intake and I don't have to worry about her munching on junk food. I do have to worry about, however, a super cute, pouty-lipped whiney Izzy kicking me out of bed in the middle of the night because she is hungry. I've been watering down her Pediasure and adding pectin to her second dinner to trick the hunger center of her brain, and so far so good.

The most exciting news is that Phil's parents are arriving tomorrow and after 4 years, we will spend Christmas with family. 

Freeze

During my language teacher years, in another life, I used this drama technique in class called "freeze" in order to work on my students' listening comprehension as well as to cater to the language learning styles of my kinesthetic learners. I read a text out loud that I had carefully prepared in advance, making sure that it was appropriate for my student's comprehension level, yet it was challenging enough to facilitate improvement in their listening skills. Then I asked my students to act out the text while marching around in a circle. Periodically, I interrupted the narrative by yelling out "FREEZE, an indication to my students that they had to stop and hold the position in which they were at the moment. It was a favorite among high school students and extraverted goofballs of any age. Another popular activity also involved freezing, except during that one, I was freezing the frames of a video, or DVD as we entered the 21st century, and my students had to answer questions or make predictions concerning the movie or the clip we were watching. It was fun for language learning, but to watch a program while constantly pausing it without the ulterior motive of a language teacher, now that would be extremely annoying and utterly unenjoyable. How much more annoying it must be to watch life that way, constantly being put on pause, coming in and out of a trance due to different seizures that make you lose all your muscle tone or compromise your consciousness. And you can't even tackle the culprit and forcibly remove the remote out of their hands. I watched Izzy seize about a thousand times yesterday. I didn't actually count her attacks, I just calculated and averaged them, but considering that at times she had a seizure every 5 to 10 seconds, I rounded way down. The occurrence of a seizure is a tragedy, the occurrence of a million is a statistic, to massively misquote the misquotation. I'm fully aware that a 1000+++ seizures a day fall way out of most people's reality zone and I don't expect them to comprehend it. Jeez, I can't even comprehend it. "Can they give her some medication for her seizures?"- a nice lady asked me sweetly just today. I watch Izzy fight the seizures every day, smiling, playing, vocalizing between them and I wonder how many seizures one can endure, how long can she go on like this before her body gives up and the pauses become a full stop. 

Same old

It looks like 11/11/11 has passed too without an apocalypse and the world hasn't ended despite of the doomsday predictions and the neat little palindromic date on the calendar. Now if you have ever experienced an apocalypse on any scale, you know that worlds usually fall apart unexpectedly and unannounced.  Do you know what else hasn't ended? The flipping seizures. We took Izzy to the neurologist on Tuesday to have her VNS cranked up in frequency and also in current intensity but these suckers are stubborn and she is still seizing every 20 seconds. Her seizures are so relentless that they would make Mother Teresa kick a cow. When I expressed my concern about the freakish frequency of the seizures to the neurologist, he reassured us that there was still plenty of room for increase, we just have to go slowly so the nerve can get used to the stimulation. He also didn't share the sentiment that we are running out of options and he assured us that there are some new anti-epileptic drugs coming out in 1212 to which we can switch from the Keppra and the Vimpat. He also told us about a new procedure, another VNS-like device that is placed directly within the skull, underneath the scalp, where it detects abnormal electric activity in the brain and sends out electric signals to stop the seizures before they manifest themselves in any symptoms. It's absolutely amazing, fascinating and mind-boggling, unless it is your kid whose skull and brain we are talking about, in which case it's just simply mind-boggling. 

http://probablynotagoodsign.com/funny-caution-warning-signs/as-if-instant-death-isnt-punishment-enough/

Monday blues

I've been a lousy blogger of late, writing fewer posts, slacking on my replies to comments, not commenting on my favorite blogs - delinquencies for which I feel moderately remorseful. It's not that I've been so very busy, or at least not busier than usual, I just simply didn't feel like writing a gloomy post about the vengeful return of Izzy's nonstop seizures, especially not when everybody is so full of thankfulness in the cinnamon scented hallway of Thanksgiving. However, it's hard to concentrate on anything other than the accursed seizures when Izzy has a drop attack every ten seconds, and no matter how much I try to think about happily hopping unicorns, beauteous butterflies or ravishing rainbows, I still want to kick something hard or forcefully smash my head into the suction machine. Tomorrow we are going to see our neurologist who will most likely crank up the VNS again, which will hopefully yield the previous seizure eliminating effects and we can enjoy a little intermission before these cursed electric brainstorms return. I wish I was more hopeful and I believed that there was some magical solution out there, some new medication, groundbreaking method, magic potion or some holy water that eradicates the seizures once and for all, but I'm kind of jaded and we are kind of running out of options. 

A post in which I talk about Phil's birthday, zombies, and I might mention pedophiles

It was Phil's birthday this weekend and we celebrated it like most people celebrate birthdays: with some tasty food, a luscious cake and a fake-blood-drenched zombie costume. The zombie costume took part in our birthday festivity as it was being prepared for the Halloween fun at Phil's studio on the following day, which had the theme 'rednecks and zombies'. Therefore, between our celebratory brunch and celebratory dinner, we spent a chunk of our afternoon at the Halloween Bootique looking for fake blood, decay-colored face paint, and whatever other accessories an average zombie would need on an average Monday. You didn't really think that we simply picked up a pre-manufactured generic zombie costume, did you? I mean, we are talking about Phil here, the king of minuscule detail, the only male I know who can instantly notice a haircut, or spot an eyebrow wax. On anybody, not just me. He would never show up in a less than perfect zombie costume anywhere, let alone at a place where perfectionists of his ilk congregate, so we even bought some fake nails at CVS that he painted brown and made all jagged. 

While Phil was exploring the Halloween bootique's zombie-making resources, I was wandering around the store with the Bean, wondering if I was a lousy mom for not intending to dress my child up in some cute costume and take her trick-or-treating. It's not that I have anything against Christinized pagan holidays, nor am I a member of the national dental association, thus my apprehensions were not ideological in sort, just purely pragmatic. I did, in fact, consider the pro's and con's of stuffing Izzy into some adorable Halloween outfit, but the pro's were outweighed by the distinct possibility that the Bean would hate the whole ordeal with an intense passion. Izzy detests it when I change her clothes and does everything in her power to make it as difficult for me as possible, presumably to discourage me from ever doing it again. I made several attempts at different holidays to dress her up in cute little outfits and make cute little pictures of her, but all my endeavors ended in miserable failures. Costumes are a pain in the buttocks to wear and they are uncomfortable for even the willing, ambulating, non-bionic adult, so they are especially unpleasant for someone who cannot sit, stand or walk. People only wear them because of the psychological or material pay-off, which Izzy wouldn't have. Since she doesn't care and she can't eat candy, she would be stuck with the uncomfortable bits of the ordeal, which would decidedly be a rip-off. 

I  have to admit though that I was a bit jealous of Phil's upcoming zombie/redneck party, especially when I spotted a cute princess Leia costume on display, between conservative Princess Leia and slightly slutty Princess Leia. It did cross my mind to get the white dress and the headphone-hair, and go trick or treating after all with my sidekick Izzy the Force. By the way, I wholeheartedly support women's rights, including the right to squeeze one's body into tiny, tight, revealing and unflattering outfits, and I realize that some women embrace Halloween as one's one and only chance of the year to unleash her inner vamp or tramp without fearing public judgement, even though I have never personally experienced such urge. However, what I don't understand is this: why would any halloween costume manufacturer think that a mom would want to buy some risqué ensemble for her teen or tween daughter. And who thinks it's cute to dress up pre-adolescent girls as slightly promiscuous miniature adults anyway, besides pedophiles and freaky pageant judges? Seriously, if I had a young teenage daughter, I would probably steer her towards costumes like a ghost or a CDC agent, or a bee-keeper. (Have I ever told you that when Phil and I were dating, we once went to this dress-up party as ghosts, but everybody mistook us for Ku Klux Klan members because our hoods were too pointy? But I digress.)

Anyway, Phil's zombie costume turned out fabulous, almost as fabulous as his birthday dinner and birthday cake (angelfood cake with strawberry sauce, fresh strawberries and whip cream, in case you wondered). Monday morning he scared the bejesus out of the maintenance guy on the way to work who yelled out "whatthehell" with a distinct spanish accent, but he still got smiles from Izzy. It's good to know that the Bean would still love him unconditionally, even if he fell prey to a zombie apocalypse. On the other hand, the Bean was not as generous with me: when I put on the long black wig that Phil ditched for its bangs claiming that zombies don't get haircuts, Izzy refused to look at me. As long as I was wearing the wig, no matter what I did or how close I got, she turned her head, rolled away or diverted her eyes. She hated it. Oh well, the ugly black wig elicited a small cry from our infant stim therapist when I opened the door in it, so it wasn't a waste after all.