Hallelujah on Adult Day Programs That Come Through and Gratitude for Your Tax Dollars at Work

at the Hammer Museum, Los Angeles

I wasn't going to say anything until it was a done deal, but it's a done deal for the most part and Sophie has finally started her day program in Santa Monica.

This is big.

This is HUGE.

Sophie "graduated" from the LAUSD over a year and a half ago. She's been on a waiting list for years for this place, got a place and then we basically had to wait a million years for the right aide and the right paperwork and the right funding and you know the drill. Sophie has been at home with me and Saint Mirtha for all this time, and I can tell you that I'm a really boring mother at this point and an even more boring entertainer/cruise director/activities coordinator. I'm not lying. I am as burnt out as they come, and I'm making no apologies for that. Catholic girls have enough guilt flying around their parts to cover it, and while I've sworn off the Catholic church, I can't swear off the guilt. Saint Mirtha's got some chops in all those fields, but Sophie has basically been hanging around us or a bunch of toddlers and babies and nannies at the neighborhood park. Nothing wrong with that, actually, as Sophie is very interested in babies, and I've fantasized about her taking on a second job (when she gets off her Uber shift) as a baby whisperer.

But this day program is the bomb. It's community-based, so the young men and women go out everyday into the community and do stuff. If they're able, they work, go to the YMCA and work out or learn a trade. If they're like Sophie, they go to museums, the park, the beach, have music therapy, learn self-help skills, learn how to better communicate their needs and -- well -- make friendships and enjoy their lives.

on a Metro bus, on her way to the mall

The drive to the program is pretty brutal because I live in Los Angeles and the program is in Santa Monica. I'm talking about 9.8 miles but forty-five minutes on the highway, but I'm happy to drive to the proverbial Timbuktu if it means Sophie is happy and getting what she needs to lead a good, dignified life of value.

I found out today that she has several classmates from her PRESCHOOL in an LAUSD program at UCLA. That was back in the last century! I've lost touch with nearly all of those families in the last twenty years, mainly because we don't live on the west side where most of them still reside, but I have such good memories of those early days, and I'm thrilled to get acquainted again. Sadly, several of the children that Sophie began her school years with have passed away -- in those early childhood days, it was not unusual to go to at least one funeral a year of a young person. Looking at these grown men and women and imagining all that they've been through is emotional for me in bittersweet ways.

Saint Mirtha is training Sophie's fabulous new aide, Lauren, this week. I dropped them off both mornings, went for a walk on the beach and then did some freelance writing work yesterday, another interview for a possible job today and then -- wait for it --

began revising my manuscript at the public library.















The universe is abundant.

How We Do It, Part LIX

I was all psyched to let ya'll know what happened today when I made my visit to my neighborhood police station, but then this happened, and since I still have a phone call to make to clarify some of the things I learned in a discussion with a peace officer, I'm going to tell ya'll about this instead of that.

It's nothing, really, but just as I was texting with my fellow special needs parent Heather about the soul-killing texts we get from our respective daughters' schools, about their various bodily functions, numbers of seizures, etc. (and god bless the teachers and aides, I'm not dissing them), Sophie's bus pulled up in front of my house. I was in my bedroom and heard the tell-tale squeal of the brakes, but Oliver yelled from the front of the house anyway, MOM! SOPHIE'S BUS IS HERE! I got up from my desk and made my way through my mansion and out the door to the end of the driveway where the bus had parked. It wasn't until I got to the end of the driveway, though, that the door opened, and a tiny little young man climbed down the steps and greeted me. He was, perhaps, twelve years old and dressed in a bus driver's uniform. He held a clipboard.

Hello, he said to me.

Hi there! I said and peered in to see Sophie.

I'm going to need to see some identification, he said.

I looked at him and then around and then behind me, where Oliver stood looking at me. Oliver rolled his eyes.

Excuse me, I said. I'm her mother!

Sophie's bus aide poked his head around and told the Boy Bus Driver that I was indeed her mother.

The Boy Bus Driver said, Oh, you look different and I need to be sure that you are her mother. I'll need an identification. Given that I've thought about gardening in the nude to scare away McMansion buyers and developers, I looked down to double-check my appearance, but I had remembered to wear pants, my white eyelet blouse wasn't as revealing as it could have been, because I'd worn both bra and camisole and with the possible exception of glasses and long hair with a streak of gray at the top, I look much the same as I've looked for the past several years. I'd even venture to say that I look better than I have in the last several years as I'm much happier, but that's basically unbloggable material.

Anywho.

Reader, this was definitely a first in the near-twenty years that Sophie's been riding the bus home from school. Granted, she often disembarks from the bus into the welcoming arms of one or two other caregivers or even her father, and bus drivers come and they go, and I can't always keep track of them. I turned to Oliver whose eyes by this time had rolled so far back into his head that I couldn't see them. Oliver is privy to much of the shenanigans and encounters with the LAUSD because I homeschooled him for a couple of years, and he's got a sense of humor as dry as southern California, which is pretty damn parched. He's also got a memory like a steel trap and swears he remembers me screaming at one of the officials from Sophie's middle school back in the early part of the decade when he wasn't even five years old. He said I was pretty scary, and I said, Who me? Bless your heart!

Oliver, go get my wallet, please, I said, and he ran back up the driveway and into our mansion. He came out a few seconds later and handed me my driver's license which I then gave to the Boy Bus Driver. He took a look at it, at me, down at his clipboard and then back at it and at me and back down. He nodded and then proceeded to let down the bus ramp. I caught myself from making some unorthodox crack about how I'd certainly want to meet the woman who'd kidnap Sophie because damn, she'd make the best wife for me, because -- well -- you know. Boy Bus Driver didn't look old enough for that kind of folderol, seemed far too earnest to appreciate the insane gallows humor that keeps me alive.

As the ramp slowly descended to ground level, he made himself look extremely busy and efficient pushing all the buttons and undoing all the straps while Oliver took Sophie's backpack from her aide and slung it over his shoulder. There's still something a tiny bit painful about watching the ramp descend to the sidewalk. Sophie looks disheveled in her wheelchair, and the fact that she can't communicate about her day, about the bus, about the Boy Bus Driver or really, anything, just hits me hard sometimes.

Oliver looked at me, then at Sophie and then at the Boy Bus Driver and said with a straight face, Hey, that's not Sophie. That's not my sister. 

Then we took off, me pushing Sophie up the ramp to our mansion like she was a queen in a chariot, and Oliver holding her backpack stuffed with jewels.

World Ocean Day

Beach in Izu by Hiroshiga

I think it's World Ocean Day.  I intend to bring Sophie to the ocean more this summer, especially given the fact that the LAUSD has overdone its usual clusterf*^kery and failed to assign her aide for summer school. I'm so incensed by it that I've decided to not send her to summer school after all.  I say incensed but I'm more of a slow burn. Let's face it. Fighting for this is fighting for mediocrity. My capitulation is borne of weariness and resignation but it's got a spark of I don't give a f*^k, too. Sorry for the profanity, but a well-placed IDGAF is healing.  I don't know if it's the benign vertigo, the twenty two years or the dragon's tail that I drag behind me, but I'm not up for the fight. I'm not up for any fights these days which is probably a good thing. Oh, I'm up for fighting for our oceans and expressing gratitude for their great blue expanse. The other day someone posted a Mary Oliver poem about the ocean that I'd never read. Who says that poetry is boring? Here it is, all sexy and dreamy:

From House of Light, Beacon Press, © 1990. photos - l: angela russo / r: marisa chrystene

From House of Light,
Beacon Press, © 1990.
photos - l: angela russo / r: marisa chrystene

Another Crow Post

I had to pick up Sophie from school early today to take her to the quarterly appointment with The Neurologist. The appointment is just for drill because we all know that when you're two decades in, there's nothing new under the sun. The crows were strutting around the parking lot of Sophie's high school, spewing their mess at me. Crows do not, they do not, like me. I don't like them. They are too large too black too loud too vulgar. They throw nuts on the ground from the tops of trees to crack them open. I think of brains dashed to pieces, their insides spinning. They hop on their crow legs across the road even as my car inches forward. Get over here, I think, and look me in the eye. For all I know they keep the world spinning. Sophie's pants were wet when I stood her up out of the wheelchair, and her wheelchair cushion was too. I sighed as crows screamed. I learned this morning that the LAUSD has not assigned Sophie to a summer school class. I screamed as crows hopped. While it's an imperative in her IEP, it's even more imperative that I not have her home all day every day for two months. This imperative makes me feel if not guilty than less than, not good enough. And please don't assure me otherwise. Crows are incredibly intelligent yet I wish I had a shotgun to pick them off, one by one, starting with the murder that sits in the pine tree outside my bedroom door. That should give you an idea of my less than not good enough. Sophie moaned in the car all the way to The Neurologist even as Bob Marley shot the sheriff and wailed of dreads and weed. Why are you moaning? I thought. Dreads and weed. I had my I'm never enough it's never enough how can it ever be enough thoughts. Sophie threw her right leg out from the backseat and hit my elbow, zinging the nerve. She's had no seizures. She is well. I pulled right into a handicapped parking space at the hospital. It wasn't raining like the last time so I didn't cry. We sat for only a few minutes under the Conquest sign where all the rich donors have their names enshrined (thank you, rich donors) and were called inside. The nurse asked no dumb questions and used the old-fashioned blood pressure thingy when I told her that it worked best. The Neurologist was pleased. We threw around the possibility of taking another bit off the Vimpat or the Onfi, but I said no. I don't really want to rock the boat or murder a murder. I feel feeble right now. I told The Neurologist about my dizzy spells, how when I lie down the room spins, the inside of my head churns and the world tilts. I didn't tell her that I'd looked up my symptoms on the interwebs, had ruled out stroke and ruled in benign paroxysmal positional vertigo. She suggested that I had benign paroxysmal positional vertigo. There's a crystal that's become unlodged and it's floating around inside my ear and tricking my brain. I'd think it was cool if I wasn't so unmoored. I don't need to rock the boat. The Neurologist confirmed the Epley maneuver treatment for it or just throw yourself on your bed on your side, she said. I love that. I'm thinking of crows, how they dash those nuts to the ground, shatter the shells and pick out the meat.

This is my message to you, oou oou. Don't worry --

about


a 



thing.

Rain, The Minotour, Mrs. Braddock's Laugh and What's Baked

Raindrops on roses
and echeverria
Dear, dear Jesus
thank you for rain 
and the plumeria.



Do you remember The Efforts To Acquire The Chariot and then Busgate? In a nutshell, it took about eighteen months and some serious Insurance and MediCal wrangling to get a wheelchair for the girl (because, you know, I might have been making up her disabilities and trying to acquire a $10,000 piece of metal for the hell of it), and then too many IEPs and phone calls to LAUSD that brought to mind an episode of Monty Python to get a lift bus for her. Sophie is supposed to have been riding in her chariot on a lift bus for, basically, years, but it wasn't until this week that one mysteriously arrived at her school. I got a call on Tuesday afternoon from her bus aide, Saint Charles, at about 3:30.  The lift is broken, Charles reported, we're going to be late because we're waiting for a mechanic. I threw back my head and laughed, Mrs. Braddock-style (watch this scene, if you don't know what I'm talking about). God, I love that scene. How about her psychedelic shirt, Mr. Braddock's robe, his drink, the half-baked comment -- hmmm, I digress. I told Charles that rather than wait for the LAUSD bus system mechanic (visions in my tiny little mother mind™ of The Man Behind the Curtain in Oz pulling all those levers to get the bus mechanic ), I would drive over to Sophie's school and pick her up myself, so by the time I got there, picked her up and brought her home it was about 4:15ish, and just an hour after she had been dismissed. At 5:30, the telephone rang, and when I picked it up, the Efficient LAUSD Robot said, This is a call from the LAUSD bus system. Your daughter PAUSE Soooophie is on a bus that will be approximately 75 minutes late.

Go back to that link of Mrs. Braddock's fantastic laugh.

Today, the lift bus pulled up while I stood at attention on the sidewalk and then waited as The Busdriver did some kind of maneuvering inside, walked to the front of the bus and then down the stairs and came out. I told her that I didn't think the lift would clear the curb, that she would probably need to back up to the driveway, so she stood and stared a bit and then walked back to the bus, shifted it into reverse and backed it up. The beeping sound emanating from the bus was so loud that I had to cover my ears. When the bus driver climbed back out of the bus to deal with the lift, the beeping continued, and as the lift lowered, I saw that Sophie had startled into a seizure so I asked the bus driver to please turn off the beeping sound and simulataneously put my hands over Sophie's ears to muffle the cacophony. I also noticed that the bus has a name, and it's Minotour. You can't make this shit up, as my old writing instructor used to say. The letters, spelled exactly like that, are right above the door. Now, I am prone to metaphorical flights of fancy, as you know, and I know you lovely Readers are, too. Let's have a game about a bus named Minotour.

Give me what you got.

Pink Pom-Poms

Every night the phone rings, and an automated voice speaks to me in a stilted English, informing me that my daughter -- Sooooophiiiiie -- was tardy or absent from school from at least one period and that her presence at school is important for her future goals and aspirations. Something like that. It's that time of year when two calls come in, the second being one announcing various activities and requirements for graduation. Tonight, the stilted English voice informed me that your daughter Sooooophiiiiiie has not turned in her pink order form for graduation gown and cap and tomorrow is the last day. Never mind that Sophie is 20 years old and apparently still listed as a twelfth grader, for the third year in a row.  

Never mind.

Cannabis Oil Question, #6

What do you do about Sophie's medicine at school and do you tell her school what she's taking?

You'll know later why I posted this daffy photo of myself that I took on hour five or so the other day that I spent in the Los Angeles airport, waiting for the Chicago airport to open. I loved those glasses, but they cost $65 which is ridiculous, even if they were vintage and everything's coming up -- oops, I don't want to give it away.

Here's what I do about Sophie's medicine at school. I don't give it to her at school but wait for her to come home to give her second dose. The first dose comes at 7:00 or 8:00 in the morning, about an hour or so before breakfast and before her other meds. The second dose comes about 3:00 or 4:00 in the afternoon, and the third comes at 10:00 at night when she's already asleep. That last dose is the most tricky, but so far we've been able to manage getting it in her mouth followed by a sip or two from her sippee cup and some gentle stroking of her cheeks to provoke the swallow reflex. She rarely wakes up.

Here's what I tell her school about the cannabis: nothing. I have told her teacher and aide, quite privately, that we're using it, but I haven't told the nurse or the principal or the vice-principal or the special education director or Oz Downtown because it's none of their business. You might raise your eyebrows at this, especially if you live in California and know about earthquake plans and emergency medicine supplies. I realized today that several months of the school year have gone by, and I haven't renewed Sophie's earthquake emergency medications in the school nursing office. To tell you the truth, I might have let the entire school year go by last year and not taken care of that either. That is wrong, I admit, and irresponsible. If there were an earthquake, and we were not able to get Sophie, she would be in deep shit without the regular administration of the two antiepileptic drugs that she takes, even though neither controls her seizures. Why is this? Because stopping these AEDS abruptly is very, very dangerous. Out here in earthquake territory, we are supposed to have water reserves for three days at a minimum and up to ten days. "They" recommend a week's supply of medication as well.

What does this have to do with cannabis? you ask. Here's the thing. I'm not worried about leaving cannabis with Sophie's school because going without the cannabis for a few days is unlikely to kill her. Yes, she might start having bazillions of seizures again like the old days, which is never very good, but she isn't addicted to the cannabis, and I can stop and start it with relative ease. Each dose is not harming her in unseen and obvious ways. That just struck me today, like an earthquake. I thought, too, about the questions I get from readers about how nervous they are to try cannabis, how they struggle with their disapproving doctors, how they wait for their doctors to lead their every single move.  I might get into trouble with this (not real trouble but more the kind of disapproval that some people have for those of us considered difficult, crazy or uncompliant), but I do what I think is best, and I don't give a flying foofoo what the doctor thinks (beyond the obvious). Twenty years has given me that confidence, and while I wouldn't ever tell someone to "disobey" their doctor, I seriously question the whole doctor says thing especially when it comes to cannabis.

Now, if I could only get up the nerve to do another wean of one of those AEDs, everything truly would be coming up daisies. In the meantime, I'm going to get those emergency supplies to the nurse at school. May there be no earthquakes when Sophie's at school, though. Please.

Other Cannabis Oil Questions Answered

# One
# Two
# Three
# Four

# Five

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.

Asking for a Winged Chariot

So, about six months or so ago, I began what I knew would be a long process to get a new wheelchair for Sophie. Those of you who know of these things will nod your head and probably don't need to read any further because you probably have post-traumatic stress disorder and what I'm about to write will probably trigger whatever form yours takes. Those of you curious about the small stuff with which we caregivers regularly deal should stick around for pure entertainment. Have I ever told you that it's the small stuff that can actually break you when you've been doing the care-giving thing for nearly twenty years? Along with God never gives you what you can't handle, and Sophie picked you as her mother because she knew how great you are, and There's a place in Heaven for you and a better life after this one, Don't sweat the small stuff is a very irritating adage. Honestly -- I've got the equanimity thing down, for the most part. I actually don't really sweat the big stuff. I can go to bed each and every night with the passing thought that I might find Sophie not breathing in the morning, a victim of SUDEP, and actually sleep just fine. I can watch tens of thousands of seizures and feel like I'm being stabbed in the heart every time but still manage to speak calmly and even negotiate how many Oreo cookies the "regular" children will get after dinner. I've talked to my comrades, and they all agree that sometimes it is the small stuff that makes us sweat.

Anyhoo. (New readers, please note that I despise this expression and reserve its use for posts dripping with sarcasm like this one.)

Sophie needs a new wheelchair. Even though she can walk, she tires easily, needs total assistance while walking and has a form of cerebral palsy that prevents her from walking long distances. Her old wheelchair is ratty and uncomfortable and a tad too small. She needs a new one, in particular, so that she can ride a bus home from school in it and avoid the precarious descent down the stairs of the regular bus which is a lawsuit waiting to happen. I began the process of getting approval for the new wheelchair about six months ago when a very nice woman visited our home and took measurements and helped me to pick out the chair that would work best for Sophie. After that, the trouble began. Sophie has private health insurance (thank you, Obama!) and secondary Medi-Cal, which is supposed to pick up anything that the private health insurance doesn't cover. I don't even know if I'm able to relate here, clearly, how complicated this whole process has become. The order has to be denied by CCS (California Children's Services), which Sophie does NOT have, before Medi-Cal will even review it, and that paperwork has to be filed BEFORE the primary insurance is even consulted. I keep smelling bullshit but not strong enough for me to do my usual smoking bread stick shenanigans (again, new readers -- I have a long history of dealing with insurance companies and pharmaceutical companies, during which I generally am on hold and smoke a bread-stick to calm down. You can go to the search bar on my sidebar and find these posts, if you're so inclined). The Neurologist had to write a letter stating the medical necessity of the wheelchair, but this couldn't be a simple letter. It had to have progress notes and all sorts of folderol, which I'm sure is necessary because of all the MediCal fraud going on and which I'm happy to oblige, but after six months or so, I'm really just sweating and sweating a lot.

You'd think I was requesting a winged chariot.

I'd use some rude curse words, but I don't want to alienate the Powers That Be or mothers or fathers who might be reading here, so I'm going to reserve those words for next year when the whole hideous election cycle gets going, and we'll be subject to the likes of Rand Paul and Sarah P and that guy from New Mexico and all those people who want their country back and want the gays to go back in the closet or the brown children to go back to where they come from and women to keep their legs closed and everyone to pray at school and have the liberty to carry a gun into Target to kill the people who threaten them. Where was I?

Oh, yeah. Sweating the small stuff. In the grand scheme of things, getting a proper wheelchair for Sophie is really not such a big deal, nothing compared to the seizures, the risk of SUDEP, financial distress, the great, black cloud of what we'll be doing when she turns 22 and can no longer go to school. Those big things, though -- I'll deal with them as I've always done. They actually enlarge me in the best way.

The small stuff? The making a medical case for a chariot drawn by winged horses? The process to get a prescription for Onfi changed to the liquid form so that I don't have to use the razor cutter to divide the dose for the next wean (a PTSD trigger for sure)? The going to another IEP to state that Sophie needs a wheelchair bus, not a regular bus but now still a regular bus because the winged chariot is not yet ordered?Not only does it make me sweat, but dealing with the small stuff also has chipped away at nearly everything by which I used to identify myself: being sweet and kind and graceful and yielding. I'm now a point, very, very sharp yet not quite broken.

How We Do It: Part XXXI in a Series: Outliers from Holland

Sophie, Car-wash, Los Angeles 2013

We're tribal people, and many moons ago I read a signature piece for the parents of the disabled called Welcome to Holland that I keened toward for about one moon and then crumpled up as I crumpled, lit it with a match, burned a few animal gods in sacrifice and threw it to the wolves. My tribe left Holland behind and ranges loosely at the borders, howling at every moon whether full and shining or slivered, letting only cracks in. Sophie's summer school (ESY) teacher sent home a progress report the other day, something I'd normally glance at in scorn because, really, what's the point? Our tribe resists the denial, doesn't welcome false blessings, looks for grace in contrast. Somehow, though, this small report of A: Produces markedly superior work and E: Excellent citizenship meant something. Under Teacher Comments: A pleasure to have in class!, the exclamation point seemed merciful. I fell back from the tribe for a moment, the moon's pull, the tide washed over me, outlier.

Too bad the LAUSD doesn't know this

Sophie World

I got this photo today from Sophie's teacher with the following email:

After a very long walk, a community trip and a cooking lesson, Sophie is just plain sacked out!

Sometimes I worry about Sophie at school -- well -- not sometimes, but more like nearly all the time. We parents of children who are non-verbal and/or completely defenseless in a myriad of ways take a certain leap of faith -- some might call it insane -- when we drop them off for six to eight hours with strangers or entrust them to school-assigned nurses and aides. While I've actually learned to at least understand the merits of the medieval chastity belt, I do believe Sophie to be safe at school, and I know that her teacher and aides do a bang-up job teaching and caring for a diverse group of special education students. My expectations for the gigantic morass that is the Los Angeles Unified School District are definitely zilch, though, and I've long let go of the legalese in Sophie's IEP, even caring whether or not her "goals" are being reached. There's only so many years when learning to feed oneself with maximum assistance is something for which to fight tooth and nail. What I'm grateful for, though, are these snippets of her life there that her teacher periodically sends me. They reassure me that Sophie has a life at school that is rich with activities and friendships and care.

Tomorrow, I'll be attending a workshop on conservator/guardian issues. Sophie will be eighteen years old in March -- good lord! -- and it's time for her to go out on her own and make her way in the world.

Just teasing. I'll no doubt learn about how to become her guardian without exploiting her rights as a human being. Stay tuned for what I imagine will be some Monty Pythonish moments as I navigate yet another system. I'll end here with a clip from a movie that my friend Jeneva recently posted on her FB page in anticipation of her son's IEP. I think it pertains to the parents' perspective dealing with any of the systems we encounter (insurance, medical, education, social, etc.). And it made me laugh out loud.

The LAUSD Cheetah and My Sanity as Ostrich

On Friday, Sophie got a slim white envelope in the mail from her high school in the Los Angeles Unified School District (LAUSD). Here's what it said:

To the Parents of SOPHIE ____________,

A candidate for graduation from Los Angeles Unified School District schools must complete a comprehensive educational program before being awarded a diploma. This program includes the completion of prescribed subjects, both academic and elective with a minimum of 230 credits.

• 12th grade to graduate = 230 credits
• 11th to 12th grade = 170 credits
• 10th to 11th grade = 110 credits
• 9th to 10th grade = 55 credits

As of the above date, your son/daughter has earned 100 credits and consequently is being demoted to the 10th grade.

It MAY be possible for students to make up some or all of the credit deficiencies, providing the counselor's advice is carefully followed when planning for the remaining time in high school.

Remember, THERE MAY NOT BE SUMMER SCHOOL AGAIN THIS YEAR, so it is important your child passes all his/her classes or he/she could be in danger of not graduating.

Blah, Blah, Blah.

So, apparently, Sophie is being demoted to 10th grade due to insufficient credits. There's so much wrong with this letter that I don't know where to start. I don't know whether to laugh or to cry but as laughing generally saves me, while crying makes me feel like shit, I'm choosing the laugh. Picture me as the goofy ostrich running like hell from the beast.

Friendships for Sophie

I've written about this subject before -- probably many times -- but I can't say anything positive has happened, and the fact that Sophie has few friends, other than those she sees daily at school, and no social life outside of our family, is one of, if not the biggest, heartbreaks of my life. I don't think I need to go into it, here, -- the heartbreak part -- because I know you understand it.

Last night, while cruising around on Facebook, I saw this article posted by Segev's father, Eric. The Canadian article is titled Learning and Teaching How to be a Friend, and makes the startling statement that perhaps it's not the child with disabilities that needs to learn to make friends, but, rather, the typical peer that needs to learn how to be a friend to someone of difference.

It occurred to me then that it was no longer Hannah who needed the training on being a friend. It was her peers. They needed to be taught how to be friends with a child with differences, so that when someone like Hannah did "tap them on the shoulder and ask 'Can I play?" they would answer "yes" and know how.

The article discusses a program called Expert Friends that not only teaches children the social skills necessary to interact with children with disabilities, but also trains teachers to help build bridges between these children.

Its goal is to stop the isolation children with special needs often experience and help teach typical children effective communication skills so they can form valued friendships with children they might otherwise have overlooked.

Here's a quote from the article that explains what can happen when children are taught the skills they need to interact with another child with differences:

"Prejudices we are not born with. All kids want to play, but they're giving up after trying the conventional way to interact [with a special needs child]. This teaches them how to figure out a different way. They feel good about that. I literally see kids wiping their brow now they are taught how to respond," says Bonita.

I found this a remarkable idea, and I'm thinking that perhaps with the help of some people in my own community I might broach it to our mighty Los Angeles Unified School District (hence, the photo at the top of this post).  Who wants to help me?

How We Do It, Part XII in a series

The physical education teacher insists on assigning Sophie an F on her report card with a U -- unsatisfactory -- under Work Habits. Sophie doesn't get to school on time for adaptive physical education, the first period of the day because she has difficulty waking. She has a cluster of seizures nearly every morning and then, later, during breakfast, a larger one. She takes two anti-epileptic drugs that, despite their inefficacy in preventing these seizures, are efficacious in promoting a simultaneous drowsy and agitated reaction about a half hour after ingestion. Sometimes, as I'm dressing her, Sophie will lie back, close her eyes and sleep. I let her sleep whenever she's sleeping and have never woken her up purposely from sleep because I know sleep as a principle. I have spent a lifetime of hours awake with Sophie, as a baby, as a toddler, as a child, as a pre-teen, as a teenager. I have a spent a lifetime of hours awake with Sophie crying, seizing, seizing, crying, awake, awake, awake. When she sleeps, she sleeps. I have explained this to the adaptive physical education teacher and the special education coordinator, have explained this history of sleep and awake, yet it makes no difference and the card comes in the mail, the faint black box with FAIL and UNSATISFACTORY and it irks me in its smallness, its meanness, its deference to the way things should be, the tyranny of should over how we must do it, by the skin of the teeth, the closing of the eyes, the held breath over the descent, the obdurate giving way to ease.

Sophie's Birthday: Part 2 and 3 (I know! So privileged!)

PART 2

I brought those cupcakes that you saw yesterday to Sophie's class, and we had a party. Every time I visit Sophie's class, I am reminded that despite the relative shabbiness of her school and the convoluted, ineffective and ridiculous larger school system, Sophie has a life here, and it is a warm and happy one.

Sophie with her aide, Saint Renita

Mr. Jackson lights the candles

Happy Birthday to Sophie

Oliver insisted on getting out of school a little early to come celebrate.

Two seniors from the high school brought Sophie balloons and sang Happy Birthday to her. I thought I was on the set of Glee. I'm not kidding.

Sophie's teacher, Mr. Jackson, sang to her. He's a musician and I believe Sophie is a tiny bit in love with him.

Evidently, Sophie is mesmerized when he sings Jack Johnson. Good to know.

Oliver kept busy helping out the other students with their word puzzles.

PART 3

Back at the ranch, we had another birthday celebration with The Husband and Henry. We ate a delicious dinner and then lit candles once again and sang Happy Birthday. All in all, it was a fantastic day.

Happy Birthday, Sophie!

Monday Whatevers

I wrote a post last night that was supposed to go up this morning, but I woke up with a start and realized that it might be a teensy-tinesy bit offensive, so in a sleepy daze I opened my computer and cancelled it. Here's an excerpt of an article titled Why Evangelicals Hate Jesus by Phil Zuckerman, a professor of sociology at Pitzer College in Claremont, California.


The results from a recent poll published by the Pew Forum on Religion and Public Life (http://www.pewforum.org/Politics-and-Elections/Tea-Party-and-Religion.aspx) reveal what social scientists have known for a long time: White Evangelical Christians are the group least likely to support politicians or policies that reflect the actual teachings of Jesus. It is perhaps one of the strangest, most dumb-founding ironies in contemporary American culture. Evangelical Christians, who most fiercely proclaim to have a personal relationship with Christ, who most confidently declare their belief that the Bible is the inerrant word of God, who go to church on a regular basis, pray daily, listen to Christian music, and place God and His Only Begotten Son at the center of their lives, are simultaneously the very people most likely to reject his teachings and despise his radical message.

You can read this article and get an idea on what my post might have been about. Think family and differences in opinion. Think about discussing religion and politics to someone on the opposite side of the spectrum who is also your relative.

Ouch.


I did find this beautiful painting that I posted at the top, because Jacob wrestling with the angel is one of my favorite stories in the Bible. I've written about it here.

Vision After the Sermon: Jakob Wrestling with the Angel
Paul Gauguin 1888

In other news, I'm still collecting comments for a chance to win a $100 gift card to Dick's Sporting Goods. Don't you want to read or re-read about my efforts to be a good sports mom to my boys? Go HERE.

In yet more news, I have not ONE but TWO IEPs this week. My youngest son has some reading difficulties, and his IEP is actually a piece of cake, but I anticipate some fireworks at Sophie's. Not to mention the yearly bout of butterflies, depression and despair that the IEP generally brings, no matter how many times one has done it.

La Nausee. (that's French for nausea with an accent aigu). I read Sartre's book of the same title while studying French in college. I lay in a tire swing on the front porch of the house I lived in which we had christened The Shanty and parsed out the novel's spare French angst. Here's a picture of my copy which I still have:

Creepy, right? There appear to be dead trees and plants still growing out of the guy's head. I think that's symbolic, and perhaps I had a presentiment twenty-five years ago of my future with the Los Angeles Unified School District. I hated Sartre just about as much as I hate IEPs, even though I did love lying on that paint chippee porch with my best girl friends.

On the plus side, I'm grateful that the Individualized Education Plan actually exists and that my children's needs are accommodated, however haphazardly. When I dropped Sophie off at school this morning, I realized that I actually love her aide. I realized that I needed to write an entire post about Renita. I'm going to do that one of these days.

What came home in Sophie's backpack yesterday:

There's nothing like being known and counted in the Los Angeles Unified School district.

The Beef (and I've longed to give it up)

Thank you for all your kind words of sympathy and advice regarding the recent turn of events in Sophie's school life. It's such a blessing to have this online community, and many of you experience similar situations, struggle with similar problems and some even know the law! I feel like I have to respond in some way regarding what's going on here in California and, particularly, Los Angeles.

The fact is: the state is supposedly broke and so is the city. That means cuts, and I mean draconian cuts. California is unique in the United States for its entitlement program -- The California Department of Developmental Services is the agency through which the State of California provides services and supports to individuals with developmental disabilities. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and other related conditions. Services are provided through state-operated developmental centers and community facilities, and contracts with 21 nonprofit regional centers. The regional centers serve as a local resource to help find and access the services and supports available to individuals with developmental disabilities and their families. During the last couple of years, the services provided by Regional Centers have been slowly but inexorably cut -- those services include therapies, partial diaper reimbursement, respite, after-school programs, etc. Sophie is still a client of our local Regional Center, but she has lost most of the funding she used to receive. When music therapy was cut, I applied for and received a grant and partial scholarship from the agency that works with her. We no longer receive partial reimbursement for diapers, so I pay completely for that. Most after-school programs and summer camps have been cut, and I've fought tooth and nail to retain some of the respite hours that we receive.

At the same time, the Los Angeles Unified School District is also making enormous cuts in its budget and there doesn't seem to be an end in sight. LAUSD is a behemoth, the second largest public school system in the country and probably the most ill-managed and inefficient. I have long wanted to take Sophie out of the system entirely, but there are very few (like none!) programs, private or otherwise, that would be appropriate for her. For the most part, she has been in some very nice classes, and the current one is no exception. Her teacher and all the aides work diligently and lovingly with all the kids despite enormous constraints, including now, twice monthly furloughs, the threat of layoff and a shorter school year. Sophie is finishing middle school and has spent three years on what is called the year-round schedule. This was insitituted years ago in an effort to ease over-crowding and basically allows a physical school to admit three tracks of students year-round. Sophie's track -- the infamous B -- dictated that she attend school July and August. She qualified for an extended school year (ESY) which in this case, meant that instead of being off in September (so Track A could start up), she went to "summer school" -- half days for four weeks. Then she had NO SCHOOL for the entire month of October. She went back to school in November, December, January and February and then had two months OFF -- March and April. I just assumed that she would go back to school in early May and stay in school through the summer before transferring to a regular schedule in a local high school.

But, NO. The school she is leaving is switching to the regular type school year which means she will finish in late June and be OUT OF SCHOOL for the entire months of July, August and now, most of September, because the LAUSD has pushed the opening of school later in September because of CUTS.

Whew!

For the educators out there or those who think the IEP is a legal binding agreement and that Sophie is assured of an extended school year: Well, technically, it is a legal binding document and she is eligible for an extended school year, but not when there isn't going to be an extended school year. I suppose if I had the energy or the time or the money to hire an advocate (and I'm looking into it), I could press for those things. I could press for the letter of the law.

But the BEEF is that fighting the system has a time and a place. Remember that Sophie is fifteen years old. I have an IEP for her next week and I figure that it's the ninth IEP I've had in Los Angeles. The "services" we're going to get and the things I should "demand" are mediocre at best and, frankly, not worth the fight. I did write a letter yesterday to Steve Lopez of the Los Angeles Times, in an effort to give voice to the voiceless. I told him a little of our story and tried to make it representative of many -- I impressed upon him that these budget cuts are hitting the most vulnerable and that families out here, families like mine and those in far worse circumstances, mothers like me are at serious risk. I urged him to write about the disabled, especially children and their caregivers. What I'm hoping is that he will and that we might get not just a response from the government but, more importantly, private foundations and wealthy individuals who might step out and help all of us out.

I'd like to get another job and really contribute to this world, but as long as I am tied to the endless care giving that I now have, I can't do that. You know how much I love Sophie, and being her mother and caring and advocating for her is the most important work I'll ever do. But it's too damn much at times, and this time, due to a cascade of circumstances it's about to blow.

I'll take it one day at a time. But if I won the lottery, this is part of what I'd do:

1. Pay off my debts.
2. Get full-time help for Sophie.
3. Start a non-profit foundation to fund a school for kids like Sophie. The school would be beautiful -- a place of beauty and nature and music and art and dance. There would be academics for those who could learn to read and write. There would be movement classes and hippotherapy and yoga and animals to take care of. We would have a garden and delicious food. There would be trees under which to sit and an accessible tree-house to sit inside. The school would be called Just Because and the children and young adults who attended would be there just because. They would be there just because they are alive, have integrity and are worthy of these things. There would be no expectations of success or employment or integration. They would be there just because.