Friday, August 22, 2014

Simmah Down!

My brother-in-law, a native Tennessean, used to shush his young sons up with a very loud, goodnatured, Simmah DOWN!, and that's what I think I'm going to have to say right here on the old blog.


I'm including myself in that admonition, too. I'm going to lay to rest the posts that provoked so much personal attack, even as the anonymous commenter told us her name in "self-defense." Thank you, Elise. I don't want to disable anonymous posts because I agree with another anonymous poster that privacy can be an issue, and I want to respect that. I also don't want to discourage people who disagree with me, and there have been many such back and forths over the years that are stimulating and interesting. I believe Elise has missed those and dwells, probably, on those that discuss G.W. Bush's nasty smile. I hope the back and forth continues and don't want to discourage it by disabling the anonymous function. I think where I draw the line is when someone directs comments at me, my husband or one of my children, because let's face it -- that sort of thing is creepy.

This is, after all, a blog. 

As for Facebook, I've removed the Networked Blogs thingamajig, but I love seeing what my old friends are up to, enjoy the various interesting articles and humor stuff that is posted, and most importantly have a pretty incredible community of fellow epilepsy families that I just can't be connected to anywhere else.

So, onward.

What are ya'll doing today?

Wednesday, August 20, 2014

Wink, #2

We shelter in ourselves an angel
whom we constantly shock.

Jean Cocteau

Those who restrain desire do so
because theirs is weak enough
to be restrained.

William Blake

At the doughnut shop, I waited in line to buy a sesame bagel, toasted, with cream cheese, bacon and tomato.

A woman in an arm brace, the kind used for carpal tunnel syndrome, sat at a small table with an autistic man. He ate a powdered donut with jelly oozing out, and she played with three figs on a napkin.

The young man in front of me had a tattoo on his arm that read I Do The Wrong Things For The Right Reasons.

I might begin a How We Do It post with these lines that I heard Lorrie Moore say that night I went to hear her read:

How can it be described? How can any of it be described?
The trip and the story of the trip are always two different things.

Narrow Borderlines

Of all people, it was seeing former President GW Bush's smug mug on Facebook this morning, getting ready to dump a bucket of ice water on his head that prompted me to want to write something on this blog that I believe has been languishing for days due to my relatively comatose consciousness. I happened to see that smug mug right after I'd read the headline (cause that's all I can handle at this point) about the journalist who was beheaded by the militants in Syria, and the grotesquerie of it all just struck me, right then and there. I might be only expressing the biased and simple thoughts of a certain tribe (because aren't we all tribal, after all?), but there's something incredibly ludicrous about that man -- our former President -- smiling his nasty smile as he sits in front of his family fortress, his head intact, across the world from a country that you could arguably say he helped to de-stabilize with his disastrous war thirteen years ago. Now I don't think the black-hooded figure looming over the American journalist dressed in an orange robe is anything but a vile human being who we can only hope will be judged in some way at some point commensurate with his crimes, but I'll be damned if I'm not going to think any other than madness, too, at that video of that man getting ready to dump ice water over his head.

Moving on.

This quote intrigues me:

The most fascinating and perhaps most significant of all interfaces is the one that separates yet connects the ridiculous and the sublime. The surprisingly narrow borderline between things holy and things profane, between prayer and laughter, between a Leonardo chalice and Warhol soup can, between the Clear Light and the joke, provides a zone of meaning as exhilarating as it is heretical: a whisper of psychic release so acutely yet weirdly portentous it just might offer a clue to the mystery of being.
--Tom Robbins, from Now Showing: Satori 

Read the whole article -- it's short and sweet and so perfectly helps me to realize why I was so struck by the head of G.W. Bush today, engaged in innocent activity, and by the head of that innocent journalist, severed from his body. Perhaps my claiming that all is vanity, that it's all madness and insanity is defensive, a way to protect myself from the horror, the horror. Or maybe it's just another path to satori or understanding. I have no idea.

Tuesday, August 19, 2014

The Brazilian Bus Chronicles


I wish I had a photo of Sophie getting out of the school bus that she's ridden for years and years. It's a delicate and precarious operation to get her down the steep stairs, a recipe for disaster, to use a cliche (and I'm going to use several today -- count them for a prize), and one of my top ten Special Needs Mother Failures. You long-time readers might recall The Adaptive Carseat Bus Chronicles from days of yore, when it took an IEP, communication with the bus dispatcher and various other bureaucrats to locate a device that turned out to be something Hannibal Lecter might wear rather than the restraint that Sophie needed. When I insisted that the "device" was inappropriate, I was told back then that they'd need an IEP to remove it and until that IEP was held, Sophie couldn't ride the bus. That whole saga eventually fizzled out, but it left me, the proverbial pile of ashes, smoking hot yet utterly burnt out. Hence the Special Needs Mother Failure. I've let the bus situation go on for way too long -- for years, actually, until Sophie's last IEP back in April, the one where no one showed up, I did a naked table dance and then we had to table it and reschedule? Remember that? Well, during the last week of school, we held the rescheduled IEP and put in the stipulation that Sophie needed a lift bus for safety. It's in the IEP which should mean that like Moses' tablet, it's etched in stone. But we're already in the second week of school, and the trouble is again bus-related, another chronicle of poor communication, IEP directives flouted, the Wicked Witch of the East reincarnated in the form of a woman whom I believe is bent on revenge against me***, one of those mothers, an under-staffed special education office in a school with 2700 students (there is no coordinator this year!), and one very kind vice-principal who is trying to iron things out.  Oliver, who overheard my conversation with the very kind vice-principal this morning said, I think I'd want to kill myself if I worked in a place like Sophie's school, Mom. As for me, I'm still a pile of ashes and this time stone cold.

Please, someone, light my fire.

***Several years ago, when Sophie first started high school, the Wicked Witch of the East and I had a confrontation about Sophie's aide on the bus. The WWoE thought it was reasonable to place Sophie on a bus with an untrained companion -- someone who didn't know her or her seizures or anything, really, and was probably similar to one of those minion monkeys that her sister, the Wicked Witch of the West (who's now retired) ordered around. When I objected, said it wasn't safe or logical, that Sophie's aide should ride the bus with her, she agreed with me and then said the words that will ring forever in my heart and head as the Crux of the Situation:

You are right and it is the logical thing to do. It's the right thing to do. But if we do it for you, then we have to do it for everyone!

Good Lord, ya'll. I lay down right then and there and died another small death.

Reader, go with this where you will. Count the cliches and get back to me. Throw some paper up in the air in solidarity.

Monday, August 18, 2014

First Day of School Traditions

As evidenced by the late hour that this post is going up, I've got nothing for you today. I've got nothing for me today, either, to tell you the truth. It was Henry's first day back to school, and I was the carpool driver, so I picked up two Cookies and Cream milkshakes for him and his friend. They were a welcome sight in the 90 degree plus San Fernando Valley heat, and it's that sort of thoughtful gesture that I believe makes me a good enough mother. Sometimes, we have to pat ourselves on the back, don't we?

No need to respond. These are, after all, the dog days of August.

Sunday, August 17, 2014


The other day I unearthed a box that was underneath my bed -- yes, it was buried under my bed, covered in dust. My father had sent it to me some years ago, and I don't think I had ever opened it or really looked at the contents. I unfolded my white eyelet high school graduation dress from 1981, my cream-colored (perhaps it was once white) First Holy Communion dress from 1970, a white pinafore that I believe I wore as part of my Dorothy costume from my starring role in the school play in fourth grade, 1972, my Brownie uniform, my Girl Scout uniform and the above accessories. Other than a surreal horror at how tiny , truly tiny I was, not just in second and fourth grades but in my last year of high school (honestly, I swear that I could no more pull that thing over my THIGH much less pull it over my breasts and shoulders and zip it up), I was cast back into intense nostalgia for childhood. On throw-back Thursday last week, I posted a photo of myself from sometime in the late 1980s on Facebook, and more than a hundred people "liked" it. Comments included many exclamations of wonder -- Wow! -- which inevitably made me think have I changed that much? As evidenced by that tiny white dress, well, yes. But when I peer closely at the photo, looking for the me that is myself, I see her, despite the superficial changes. I've mused with girlfriends about unsnarling our identities from our children as we and they age -- how difficult it is to figure out and find, reclaim that me that was before the me that is today. Sometimes it takes peering into photos to find ourselves, not so much to remind ourselves of that youthful beauty but to remind ourselves that life, while transformative, has not irrevocably changed who we are in the most essential sense. I do this with photos of my children, too -- flipping through photo books that I lovingly made when they were babies and toddlers, scrolling through the thousands I have stored on my computer -- Sophie, Henry, Oliver are still there, in the eyes, in the smiles, in the people they've become.

But what do we do with all this stuff? Do I dry-clean the dresses and uniforms, go to The Container Store and buy that preservation tissue and boxes in which to place it lovingly for my progeny? It's hard to imagine either Henry or Oliver will take along this box, open it and feel anything, really, about it other than oh, god, more of Mom's crap. And even though it seems as if all things eventually go there, I am struck by the fact that Sophie, my only daughter, the obvious person to receive these things, will obviously have no need for them or awareness of their "value," if she even lives longer than me. After all, despite the fact that I've saved many bits and pieces of her own life -- darling baby clothes, my favorite of her many beautiful shoes and outfits that I splurged on over the years, some of her "artwork" from early years in preschool and kindergarten when I had no idea how things would turn out -- they really please and mean nothing to anybody but me. Perhaps there's a lesson in that, but I'm not sure. I won't throw any of it right now, though, heavy as it is, invested still with emotion and longing and reminders.

Saturday, August 16, 2014


Thanks to a homeschooling mentor of mine, I have been reading and re-reading this incredible article about children and education. The title is A Thousand Rivers: What the modern world has forgotten about children and learning.  As I gear up to do what may be a complete "school year" at home with Oliver, I feel periodically panicked and instinctively confident. My friend sent the article more than a week ago, but I opened it tonight, during a less than instinctively confident moment. I took a deep breath as I read, not so much because it confirms what I feel, instinctively, but because it's written so beautifully and is particularly persuasive. It makes sense. It deals with the madness. As my friends send their children off to four-year colleges, after a frantic year of freaking out about the process, as my own son gets ready for another grueling year in a typical Catholic high school (that he very much wants to stay in, despite my own reservations,) as Sophie is so very much "left behind" in her local public high school, I am relieved to be following my instincts -- and, most importantly, Oliver's, for another year.

Here's an excerpt from the article:

We have radically altered our own evolved species behavior by segregating children artificially in same-age peer groups instead of mixed-age communities, by compelling them to be indoors and sedentary for most of the day, by asking them to learn from text-based artificial materials instead of contextualized real-world activities, by dictating arbitrary timetables for learning rather than following the unfolding of a child’s developmental readiness. Common sense should tell us that all of this will have complex and unpredictable results. In fact, it does. While some children seem able to function in this completely artificial environment, really significant numbers of them cannot. Around the world, every day, millions and millions and millions of normal bright healthy children are labelled as failures in ways that damage them for life. And increasingly, those who cannot adapt to the artificial environment of school are diagnosed as brain-disordered and drugged. 

Here's a clip from a documentary which is having screenings all over the world:

Schooling The World: The White Man's Last Burden trailer HD from lost people films on Vimeo.

Friday, August 15, 2014

White-knuckling it

Help me, Rhonda.

Colors are the wounds of light

William Blake

I must have had a difficult dream life last night as I slept, because I woke feeling bruised and worn, hot behind the eyes. I woke just before dawn when it was still dark, watched the sun come up through the blinds on the door. Yesterday, I bought myself some tiny pink roses and put them in a vase and put the vase on my bedroom dresser. Under the vase, I put a white piece of notepaper on which was written the names and numbers of the people at Sophie's school who are supposed to be helping us. So much of my energy is directed toward the hostile, toward difficulty. I thought I'd let the colors do the work.

Does that make sense?

Thursday, August 14, 2014

Riding in the Car with Boys and Other Stuff

to Elizabeth L.

This morning I had an exhaustive conversation with several LAUSD worker bees because despite it being only the third day of the 2014-2015 school year, and the sixth year that Sophelia Bedelia has attended this school and therefore the sixth year that she has ridden the bus in the afternoons, there are problems. I've told you before that we refer to the Special Education Department of the LAUSD as                                        D O W N T O W N because for as long as I've known it (which is going on seventeen years!), whenever there are problems, anyone who works for the LAUSD blames it on  D O W N T O W N.

Like today. Apparently, DOWNTOWN has eliminated the position of SPED coordinator at our school because -- well -- who knows why? We had a rather nice and efficient coordinator last year, a welcome replacement for the retired Wicked Witch of the West, but I guess it was asking too much to see some continuity. I believe he has been shuffled back to another classroom and a new person is temporarily in the school office, but she obviously had never heard of Sophie nor did she know anything about her IEP, the wheelchair bus request which is in the IEP and the fact that the aide assigned to ride the bus with her was also assigned to ride with another kid who is apparently quite a handful. I'm not going to belabor this clusterf**k and tell you everything that has transpired because it's boring and very first worldish, but I kept Sophie home from school today so that the new bee could figure out the problem, and after the telephone call I felt overwhelmed and crazy again because remember: It's the small stuff that is going to kill me. I calmed myself down by imagining a trip to D O W N T O W N where I imagine I'd find some nasty little man behind a curtain, sort of like Oz.

Anywoo. Let's move on to riding in the car with boys.

Today's conversation and arguments revolved around Burpsnarts. The Brothers were actually arguing over Burpsnarts, which they explained are when you burp, sneeze and fart all at once. I repeat that they were having a conversation and actually arguing about this, and while it didn't come to blows, I fantasized a bit about slowing down and jumping out. Because I am a responsible woman, though, I refrained from it and in my mind thought about dining out with James Joyce and Nora and then getting on a private plane with my friend Elizabeth and moving to Bora Bora.

Helping Hands Needed

A reader sent me a lovely email about this blog and about the community that has grown up around it. She is a mother of two children, one a young girl with Down Syndrome and the other a teenager with significant and crippling anxiety and depression. I asked her permission to post her question here, because I just have a feeling that someone out there reading might be able to help her. If you can answer, please leave a comment or email me your contact information. If you yourself write about these issues, please let us know! My email is elsophieATgmailDOTcom.

Do you know of any blogs written by moms, or dads, of teens with major depression/anxiety?   I've been looking for a really insightful one, with really good writing. 

Thank you so much. 

Wednesday, August 13, 2014

Dandelion Wishes

I was washing the crepe pan in the sink, the water was running and I thought I heard a thump so I turned the water off and walked to Sophie's room. Hearts beat fast immediately. They remember. Tonight, though, there was no body on the floor, no blood pooling, no girl on all fours, struggling to get up. Sophie stood at the door, her curls more a  dandelion of wishes yet blown than halo. She walked back toward her bed and sat down. I stood at the door and said, Hey there. I'm just washing up the dishes. Wanna come inside with me? She kind of looked at me and then away, but for a moment, I could imagine her reply, could almost hear it.

Cannabis Oil Questions Answered #3

How does Sophie take Charlotte's Web, and how much does it cost?

A lot of people don't realize that Charlotte's Web is a tincture with an olive-oil base and that it's easily drawn up in a small syringe and placed in the mouth. It tastes like olive oil with a faintly bitter tint, but I'm what you call a super-taster, so I imagine Sophie doesn't taste much of anything. The doctor recommends that it be given with either avocado or full-fat yogurt, but we don't always do this, either, as it's given three times a day, apart from Sophie's other medications. She gets it in the early morning, in the afternoon when she gets home from school and then around 10:00 at night. For the last dose, she's usually sleeping, but we're able to get it in her mouth without waking her up, and I've perfected the art, even, of getting her to swallow by rubbing her throat lightly or the sides of her face. I know that people give the medication through G-tubes, too.

As for cost, currently we pay $.05 per mg. I am averaging about $300 for a one-month supply. I know that's a lot of money, but to put it in perspective, I currently pay nearly $200 in co-pays for Sophie's medications, not counting the pharmacy deductible, and that's with private insurance and secondary Medi-Cal. Some of you long-time readers know that my co-pay for Onfi was nearly $500 a month until I got it from Canada for $61 and then found a non-profit foundation that picked up the co-pay. When we finally shed our abysmal Anthem Blue Cross policy and added Sophie to our Health Net plan (thank you, Affordable Care Act), we had to pay a slightly higher deductible, but they added Onfi to the formulary and picked up a greater portion of the Onfi cost (still hefty at $70). I pay $100 co-pay for the Vimpat. And we can't forget that those drugs do nothing for Sophie's seizure disorder, have horrible side effects and are a hellacious pain to wean.

I think I've said it before, but there's not much that I wouldn't do to come up with the money to pay for Charlotte's Web, given that it has cut Sophie's seizures down by more than 95%. You can go with that where you will.


Other Cannabis Oil Questions Answered:

# One
# Two

Tuesday, August 12, 2014

Urban Observations and Musings on Mindfulness and Disappearance

I left the CVS last night at dusk and on the way out listened to a woman, on her way in, lamenting the death of Robin Williams. It took a moment for me to realize that she was not all in her right mind, as they say, because she was asking questions of no one in particular. Robin Williams is dead? Was it a suicide or did his wife kill him? For not doing the diapers? I made tentative eye contact with her, and she asked Do you want to change dirty diapers?

As I walked home, I realized that in my purse I carried nearly $1,000 of a powerful narcotic but that I was hardly the richer for it. I also carried a $12 razor and $20 razor blades for my older son. Narcotics and razor blades nestled in a brown leather purse.

Today I took Sophie to her every three month or so neurology appointment. While I really like and admire The Neurologist, have I told you how much I hate my life when I have to go to hospitals and appointments with Sophie? You'd think at this point that I'd be sort of numb to it all, but I'm not. At the very least, my mindfulness practice enables me to identify that the physical nausea, elevated heartbeat, stifled whimpers that would so much like to eke out of my mouth, and pinprick of tears behind my eyeballs are all just -- there. I can just acknowledge them as visitors, in a way, not suppress them or hate them or indulge them. It's very precise work, though, to do that -- one of those tightrope walks that I've told ya'll about. I have no idea why I have this problem, if you can call it that. At worst, I fantasize about various ways I could disappear -- not so much suicidal thoughts or death wishes but just an end to it all.

Those legs in that photo belong to three women who were in the waiting room in the neurology department this morning. Directly behind them is a sign on the wall in large letters, spelling out the word:


Whenever we go to see The Neurologist, I stare at that word and the plaques below it, memorializing the generosity of various people who, I guess, have helped to conquer neurological disease. I rarely feel gratitude when I look on this but rather am reminded, again, of how much I hate the medical world and, particularly, war imagery. Don't get me wrong, I'm grateful that I'm not waiting to see a doctor in Africa -- let's say -- where the walls and floors are speckled and splattered with Ebola-infected blood. The world is vast and cruel, my own issues and problems dwarfed. I just hate the idea of conquest and warriors and all that lingo. I make myself laugh by thinking it should read:


or maybe:

H O L Y  S H I T

I recognized a kindred spirit in one of those three ladies attached to the legs in the photo. She was an old woman, flanked by another old woman who was her sister and a middle-aged woman who was her daughter. I know these things because the three of them spoke loudly throughout our wait to see The Neurologist. The kindred spirit woman was the one who had some sort of problem, and while her daughter and sister were relentlessly cheerful in the manner of those who aren't sick, she said at some point or another that rather than have the test, which I think was a spinal puncture, she wanted to just go ahead and die. The middle-aged daughter remarked that her mother was so negative, and the sister, who was markedly thinner and sported a bouffant hairdo and make-up, opened her mouth in a sort of gasp and declared, Well, then, who is going to take care of me when I am older? I sort of wanted to get up and go over to the sick one and put my hand on her shoulder, tell the other two to knock off the positive shit and then say, Let's get the hell out of here, but just about then, the male nurse called out Sophie's name so I got up and reluctantly walked away. I did hear my kindred spirit tell her sister testily that she did have two daughters to help her out, but the sister said, It's not the same thing, and you need to cooperate and have a better attitude and then I was out of range, on my way in to juggling Sophie while the nurse tried to get her blood pressure and to walking her up and down the bland hallways waiting for The Neurologist to appear. 

I confess that the fantasizing happened in the parking lot, after the appointment, when I forgot where my car was parked, an occurrence that happens so regularly as to belie my otherwise formidable memory. Again, mindfulness practice helps, but oh, to disappear.


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