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Jumping Into the Fray

O.K. I've held off for quite a while, now, about the H1N1 virus and vaccine, quietly reading the many posts about it and the comments about these posts. I've given my opinion on a couple of the seizure/epilepsy list serves that I'm a member of and been silenced a bit by what I believe is hysteria and fear. I even responded to an advisory put out by a very large, national epilepsy group, expressing my anger that parents of children with neurodevelopmental conditions do not have nearly enough information to make informed decisions about this virus and the vaccine for it.

 This space is not sufficient to really voice my opinion in a careful and nuanced way, balanced by facts and history, but I can probably summarize. I have a fourteen year old daughter who developed a severe seizure disorder shortly after her initial round of vaccines at two months of age. As you might know from my blog, we have never found a reason for her seizures AND have never found a treatment for them. She is profoundly disabled as a result, and despite trials of eighteen medications continues to have seizures just about every day. We stopped vaccinating her when she was about six months of age. After a year or so of largely fruitless treatment for her seizures, I began to look for alternatives and found an osteopath who changed her life and mine, steering us toward more holistic health care. As a result, her general health improved dramatically.  She stopped having ear infections and weathered colds and fevers without increases in her

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My mind is like a herd of wild elephants

in need of some taming

Ancient Pali texts liken meditation to the process of taming a wild elephant. The procedure in those days was to tie a newly captured animal to a post with a good strong rope. When you do this, the elephant is not happy. He screams and tramples, and pulls against the rope for days. Finally it sinks through his skull that he can’t get away, and he settles down. At this point you can begin to feed him and to handle him with some measure of safety. Eventually you can dispense with the rope and post altogether, and train your elephant for various tasks. Now you’ve got a tamed elephant that can be put to useful work. In this analogy the wild elephant is your wildly active mind, the rope is mindfulness, and the post is our object of meditation, our breathing. The tamed elephant who emerges from this process is a well-trained, concentrated mind that can then be used for the exceedingly tough job of piercing the layers of illusion that obscure reality. Meditation tames the mind.



- Bhante Henepola Gunaratana, from “On Practice: Breathing,” Tricycle, Spring 1995

Sophie and Truancy

On Saturday I got a letter in the mail from the Los Angeles Unified School District. This is what it said:

Dear Parent/Guardian:


This is to notify you that your child has been reported to the Pupil Services and Attendance Supervisor as a truant from school as required by the provisions of Section 48260 of the California Education Code after having been absent from school or tardy for more than 30 minutes without a valid excuse on the following dates: 7/31, 8/11, 13, 17, 20 and 10/29/09 (7 partial day absences).


Section 48260 of the Education Code states: Any pupil subject to compulsory full-time education or to compulsory continuation education who is absent from school without valid excuse on three occasions or tardy for more than 30 minutes in a school day on three occasions in one school year is a truant and will be reported to the attendance supervisor or the superintendent of the school district.


I will mention, briefly, that Sophie's IEP states quite clearly that she has a difficult time getting to school at 7:40 am every day because her seizures happen, for the most part, on waking. It's also quite evident that Sophie's seizure disorder is what keeps her from attending school every day and since she's been a student in the LAUSD for ten years, they should already be familiar with that. Evidently, though, the bureaucracy must be kicked up a notch and someone new is pumping out these letters.

While I'll be calling the district office this morning to settle this once and for all, I'm tempted to just ignore it. Who knows but Ramon Cortines (the superintendent of the whole district) himself (as written above) might even show up to find out what Sophie is up to and imagine the conversation I could have with him! (and the boys absolutely crowed when I read them this letter -- Sophie! A Truant!)

Sunday Giveaway

Here is your Host, Master Oliver, ready to pick, randomly, the winner of the HUGE, BESTSELLING new anthology My Baby Rides the Short Bus: The Unabashededly Human Experience of Raising Kids with Disabilities. 


And, in the interest of SUSPENSE, we'll first put those names, carefully transcribed from comments onto strips of paper into the hat

Master Oliver will then pick from the hat

and we see the most fortunate winner

Kristinspina of  from here to there and back is the lucky winner. Congratulations (and please send me your address so that I can send the book to you pronto! My email is on the profile page!).

Have a lovely Sunday, everyone, and thanks for entering the contest. I wish that I could send everyone a copy, but if you're so inclined you can order one on Amazon or go to your local independent bookstore!

Contented

I'm knitting, again, after a seven year hiatus. I'm making a scarf with a three-strand wool, ribbon and string yarn. It's purple and red and black and very soft.

I sat on my bed last night when the children were all asleep, a time when I'm usually typing away at one thing or another.  I downloaded Speaking of Faith with Krista Tippett, a remarkable program from American Public Media that you can listen to for free every week. Krista engages the world's most interesting thinkers and artists about questions of faith or lack thereof, and this week she replayed a 2004 interview with Karen Armstrong, the former convent nun turned prominent theologian and intellectual. There were readings of the poet T.S. Eliot's Ash Wednesday and some amazing history and beautiful music.

I felt content for the first time in weeks.

The airing of the interview is in anticipation of Ms. Armstrong's work on a Charter for Compassion, set to be unveiled on November 12th. The result of her 2008 TED prize wish, she along with Archbishop Desmond Tutu say that:

It is not simply a statement of principle; it is above all a summons to creative, practical and sustained action to meet the political, moral, religious, social and cultural problems of our time. In addition to participating in one of the many launch events, we invite each individual to adopt the charter as their own, to make a lifelong commitment to live with compassion.


In this time of people shooting fellow soldiers en masse, of armies bombing civilians and civilians killing themselves to kill others, of laws enacted banning marriage between those who love one another, all in the name of one God or another, it would probably be MEET AND GOOD to have a Charter for Compassion. Go to the website and check it out.

It Goes On and On and On and On

(with apologies to my father, who deplores politics on my blog, believing that it drives some people away...)

I spent about twenty minutes today on hold, trying to get through to UCLA's department of pediatric endocrinology. The Neurologist referred Sophie to the department last month, and I've tried to call them every day for a week. I put the phone on speaker and stood it up next to the pile of papers I was wading through. I listened to an interminable version of some Journey song which I found as agonizing as the politely worded letters from our insurance company stating that the tests ordered for The Husband (who might have suffered a stroke in early August, and we're still trying to figure out what exactly happened and what exactly might still happen) were not medically necessary and therefore not approved.

I'm really not making this up. These two things happened together and, sadly, are actually a regular occurrence in this home.

Don't stop be--leeeeeving, sang the phone and then it cut off and a human voice came on.

I was asked for all the relevant information, including why I wanted an appointment for my daughter.

We're trying to figure out whether hormones are playing a role in my daughter's seizures, I said.

The receptionist was very polite and told me that the first available appointment was:

APRIL 12th, 2010

and did I want it?

I declined and hung up.

Here's a quote from the estimable U.S. Senator, Republican Richard Selby of Alabama:

President Obama’s plans amount to “the first step in destroying the best health care system the world has ever known.”

After citing the well-known statistics of our country's rather abysmal ratings in infant mortality, healthcare costs, preventable deaths and maternal mortality, Op-Ed columnist Nicholas Kristoff of The New York Times stated: Moreover, there is one American health statistic that is strikingly above average: life expectancy for Americans who have already reached the age of 65. At that point, they can expect to live longer than the average in industrialized countries. That’s because Americans above age 65 actually have universal health care coverage: Medicare.
Click here for the whole piece.

And for anyone out there who just can't stand the idea of a faceless government bureaucrat telling you what to do with your healthcare, I ask you what the person looks like at your private insurance company or even at your big, fancy hospital. Hold on to those "pull yourself up by your bootstraps mentality" because you're going to need it when you get sick or your child does. At the rate this country is moving on real, meaningful, humanitarian reform, you might be waiting until you're 65.

And, yes, I'm perfectly aware of the luxury of this debate for someone like myself, for this country whose riches are vast. I'm cognizant of the relative ease with which I live compared to most of the world's population. But I was hoping for significant change because if it's difficult for someone like me, it's absolutely horrendous for a whole lot of other people.

Frankly, unlike that Journey song, I've stopped believing.

Lurkers, Reveal Yourself! A Giveaway!

Don't get too excited unless you're the parent of a child with special needs or you know a parent of a child with special needs or you have special needs or you just like to read about the crazy shenanigans of those whose lives are touched by those with special needs. (And, frankly, I'm growing tired of the term special needs).





I have a copy of My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities. I'll even sign it, if you'd like, or personalize it for that special someone ( I have an essay inside!).


So, please leave a comment and I'll draw a name on Sunday and announce the random winner. If you feel really, really creative and want TWO chances to win, come up with a different term than special needs.

Corner View - CONTRAST

Today's Corner View theme is Contrast and our host is Dana.

THINGS THAT I AM LOOKING FORWARD TO AND AM EXCITED ABOUT:

1. This movie:



2. Reading the stacks of books that sit all over my house, steadily but surely, constantly:

3. Editing the first fifty pages of my book, finally, and sending to an agent. Know anyone?

4. Dancing with my son at the Mother/Son Cotillion at the end of the month

5.  Sunny winter days in Los Angeles when the rest of the country is freezing (no exulting in other's misfortune, just gratitude for PLACE)

THINGS THAT I DREAD AND AM NOT EXCITED ABOUT:

1. The Husband's insane Christmas season schedule of twenty hour working days and lots of grouchiness.

2. The impending need to find a high school for Sophie for next year. Good God.

3. Paying our property taxes (I might have to send the boys out to sell matchsticks).

Guilio del Tore

4. Having our respite benefits cut by Regional Center.

5. Filling out the forms to see if Sophie qualifies with a waiver for IHSS (in-home supportive services) and then waiting to see whether she qualifies.

6. Christmas letters from people whose lives are seemingly perfect.

For more corner views: jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad, caitlin, joyce, ani, kim, natsumi, epe, kaylovesvintage, trinsch, c.t., jeannette, outi, ritva, francesca, state of bliss, jennifer, dana, denise, cabrizette, bohemia girl, isabelle, amber, a girl in the yellow shoes, mister e, janis, kari, jgy, skymring, elizabeth, allison, lise, cate, crescent moon, erin, otli, ida, caroline, lisa, dorte, kimmie, la lune dans le ciel, nicola, malo, vanessa, britta, april, b, kyndale samantha, karen, kristina, goldensunfamily, sophie, janet, mcgillicutty, aimee, sunnymama, jenell, britta, juanita, pamela, inna, daan, myrtille, cris, ibb, jodi, gillian, travelingmama, athena, pienduzz, latisha, clairette, kelleyn, iris, demara, mus, ninja, guusje, di, sammi, theresa, cherry b, victoria, kathryn , lisa, liza, juliette, braja, mulot, anne, lucy, leonor, elizabeth, helene, dominique, shokoofeh, cole, jenna, podane, grey-lemon, line, nihal, urbaNiche, inner toddler, puna, lucylaine, adrienne, emily, lynn, skywriting, eliane

I forgot

how much I loved this song.

that's what we call her, sometimes,

the Soph.

Update: Thanks to one of my kind blogging friends, there is actually an easier link to my newest publication. You don't get to see what the journal looks like, but you can read it here: CLICK.

The Strange World of the Blog

is so strange that I don't even have a photo that would have anything to do with this post. Maybe this would do:

A map of Ancient Spain

So, about a month ago, a lovely person named Isabel contacted me and asked whether she could publish one of my posts on her Spanish journal. The post she wanted is titled Balance and I have no idea how she came upon it. It's actually one of my favorite posts, a tiny slice of a typical day in the life of me with my family, the seizures, some Chinese acupuncture and herbs, friends and carpool and a strange independent film thrown in. I told the Spanish princess Isabel yes, of course you can publish this in your literary journal. I would be honored.


And so it was. The journal is called Yareah, and it looks pretty wild.
Here's the link (and good luck with navigating the site -- it's a bit difficult, but I'm definitely in there on page 22). They've changed the title from Balance to PseudoFaulknerJoyceType. All I have to say about that is !!!!!! (I actually used those three names in the body of the post as a sort of joke). There's a header, too, written in Spanish. If you can, please translate it and let me know what it says.

It's a big world.

More Obligatory Photos

Where's Waldo?

A Zombie Baseball Player

Mirtha did the make-up, and was called an amazing woman by Henry. I agree.

The hit of the party was this candy corn cola -- it made my teeth ache, just thinking about it.

I'm generally the Halloween Grinch, but this year I felt game enough to wear this giant, purple Teletubby costume.

It was strangely liberating to be Tinky-Winky, so giant and covered up. I think I haven't felt so UN-self conscious in twenty years.

Here I am with my friend J who had a fabulous orange wig. And here I am cozying up to Bert.

After hours of trick-or-treating, the boys had an incredible stash of candy. It was mind-boggling, really. They did the requisite sorting.

Talk about teeth aching...

Depression and Despair (not the Halloween sort)

Lovely title for a blog post, no? But I was struck by an article written about the philosopher Kierkegaard, someone I studied long ago in college but to whom I've given little thought over the last couple of decades. This article, though, makes me want to pull out my Fear and Trembling and get all carried away, again.

Here's a tidbit:


There is abundant chatter today about “being spiritual” but scarcely anyone believes that a person can be of troubled mind and healthy spirit. Nor can we fathom the idea that the happy wanderer, who is all smiles and has accomplished everything on his or her self-fulfillment list, is, in fact, a case of despair. But while Kierkegaard would have agreed that happiness and melancholy are mutually exclusive, he warns, “Happiness is the greatest hiding place for despair.”

Click HERE to read.