Pirouexiting IEPs

I want to tell ya'll about the day I had up on a bluff at Point Dume in Malibu, but first I want to tell you about the funniest question I was asked by one of Sophie's teachers yesterday. It was Monday morning, about 8:30, and I was doing the usual morning thing with Sophie at home which calls for a combination of the physical strength of an elephant, the body dexterity of a circus performer and the patience of a -- let's see -- praying mantis. I'm not going to give you anymore of a description than that, so let your imagination take flight, especially those of you who've been reading the exact same shit for the nearly nine years I've been writing the old blog.

Anyhoo.

The teacher* called me to ask why I wasn't at Sophie's "Exit IEP," and I said, What Exit IEP? and he said, Didn't you sign the paper letting you know the date of the Exit IEP was April the 3rd at 8:00 am? and I said, Um, no, I never received a notice about an Exit IEP and actually thought this would be the first year in two decades that I actually wouldn't have to perform my high-wire act at the IEP! (actually I didn't say that last part but I thought it with my tiny little mother mind™because you know -- really? an EXIT IEP?**) -- and he said, The form should have been in her backpack a couple of weeks ago, and I said, Well, I never received a form, and thought to myself with my tiny little mother mind™that it was weird they hadn't called me if they never received the signed form but remember I was busy with my own circus act at home which involved the elephants, the trapeze artist and the praying mantis, so I just said hmmm and nooo, and contemplated a pirouette (muscle memory every time I hear the acronym IEP), and then he said what is probably the greatest thing that I have ever heard uttered in the nineteen year history of the Sophie Girl IEP (and oh, lord, there have been some doozies), and perhaps the greatest thing ever uttered to my Caregiver Self and that was this:

Maybe one of your household staff removed it from her backpack?

Reader, need I say more?


I think not and will tell you about Point Dume and the whales and the flowers and the turquoise water and the television series being shot on the beach below which included airplane crash wreckage and actor/survivors and then later the Topanga Ranch Motel pictured above (which subs in for my "estate") at a later date.

*For the record, I love and admire Sophie's teacher, and he will be sorely missed when we are hurled off the cliff in May or shot out of the circus cannon and over the Pacific.

** For the record, I told him FOR THE FIRST TIME IN NINETEEN YEARS to just do what he had to do for the Exit IEP and send me the paper to sign. I have always wanted to check that box on the IEP notice that my household staff neglected to give me that says, "I am unable to be at the Individualized Education Meeting but hold the meeting without me anyway," because -- well -- really, what difference would it have made if I hadn't brought in those doughnuts every year, wore that pale rose-colored leotard and chalked my hands before doing the most perfect pirouettes on the wire above the earnest heads of the Powers That Be?

Penultimate Day in Special Ed

Today was Sophie's second to last day of twelfth grade for the third year in a row. Oliver and I brought party sandwiches and chips to celebrate.  I imagine those of you who don't have children with differences might get a little nervous around a bunch of adults that are not the yoozsh. They talk in different tones, if they talk at all. They might screech hello! twenty times in a row when they see you. They might bump into things around you, including you. They ask the same questions over and over. Sara pulled out her cell phone and showed me a picture of Sophie and herself from about ten years ago.I'm not kidding you. Sara has Down Sydrome and the biggest smile you've ever seen. She also showed me a photo of one of her fourteen nieces and nephews. Sara is Orthodox and has a lot of brothers and sisters. I told her to say hello to her mother whom I haven't seen in years, and Sara beamed at me.

I don't visit Sophie's class that much anymore. I trust that the life she has there is a good one and that she is well taken care of by her spectacular aide and wonderful teacher. Many of the classmates have been in school together since they were five years old. Many of them know Oliver and look forward to seeing him a few times a year.

I'm biased, of course, but Oliver rocks.

The kids in Sophie's class are not scary. They are not to be pitied, nor are they placecards for your gratitude. None of that there but for the grace of God go I bullshit. It's not hard to reach out and recognize them as fully formed human beings with the exact same rights to live on the planet as you. Try it.

Otherwise, I might have to feel sorry for you and think, there but for the grace of God go I.

Girding My Loins

Edwardian woman boxer found on the internets

I've got to gird my loins and get to The Latest Insurance Snafu. You might remember that Sophie had some routine bloodwork done a few months ago, not for the hell of it but per doctor's orders, and the insurance company only paid an infinitesimal amount despite it being an in-network provider. When I inquired, The Poor Person Who Has to Work the Phone at an Insurance Company did her clicking around and told me that the labwork was covered but venipuncture is not covered. I already wrote about this, I believe, so I won't belabor the point. I put it aside because, if you remember another post I wrote, my coping mechanism is to Do Only One Thing At A Time. Mulling or mewling or moping (not musing) about why poking Sophie's vein with a needle is not covered, although the actual blood analysis is covered was just too much that day for my tiny little mother mind,™ not to mention actually addressing the problem full-on which means calling the provider, telling her to correct the wrong diagnosis code or ask for a more specific diagnosis, use the numbers V72.6 instead of 82036, etc. etc. etc.  It's time to gird my loins and do it.

I've got some figurative or mental loin-girding going on as well these days as the end of the year at Sophie's public school wraps up. This is the third year that Sophie is considered a senior, I think, or someone has neglected to remove her from the school's graduating class rolls, so I'm subject to a daily and sometimes thrice-daily robo call letting me in on all the fun goings-on for graduates. To be fair, because of the public education laws, Sophie is allowed to stay in school until she's 22 years old, and my gratitude is nothing short of  all holds barred. What comes next will call for more than just the girding of the loins, but that's a story for -- well -- another day. In these parts, we take living in the present to the extreme.

Anyhoo.

Last night, the phone rang, and Oliver picked it up and put it directly on speaker so we could laugh ruefully about the message. This one gave a stern warning that all seniors were to clean out their lockers by no later than 10:00 this morning and that fun festivities were in order later in the day to honor the outgoing class. So far, Sophie should have picked up her cap and gown, cleaned out her locker, gathered with her classmates for a celebration and even checked out the ROTC recruiters in the parking lot with all their cheerful guidance toward a life of bravery, courage and sacrifice. Tonight, I told Oliver to please hang up the phone I don't want to hear it anymore. Oliver asked me whether it made me sad, and I said, yes sometimes it makes me really sad. We both agreed that it's weird to think of Sophie being almost the same age I was when I graduated from college this exact time of year.

Who knew that space cadet grad with thoughts of medieval French literature, modern poetry and a summer ahead of perhaps teaching English to Chinese students in Taiwan or staying with the love of her life in Chapel Hill was going to have to gird her proverbial loins to just make and listen to telephone calls in about thirty years?

Mind-Blown

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.

Rolling around with Tolstoy

I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvious of truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues , which they have proudly taught to others and which they have woven, thread by thread, into the fabric of their lives.

Tolstoy

I love that quote -- have been rolling it round and round in my mouth (I wish I spoke Russian!) as I go about my day. It pertains to the growing debacle in Iraq, and it pertains to the federal re-scheduling of medical marijuana and it pertains to our recent discussion of special education and private/public schools. It pertains to my earlier lament about Sophie's summer school location and this article I read today about the biggest house in Los Angeles being built, a whopping 85,000 square feet, valued at $150 million dollars.

Roll it around, baby, roll it around.

And P.S. One of my seesters reminded me that it also pertains to the NRA and 2nd Amendmenters and their inane arguments against gun control.

Darkest Hour Before Dawn Thoughts

The g-d dog woke me up again this morning, her nails clicking on the floor back and forth up and down the hallway, needing to go out. She needed to go out to eat grass and retch which was after she had thrown up on the floor at the foot of my bed. I let her out into the honeymoon-lit back yard and then I let her in, closed the door of my bedroom and pushed the wicker hamper in front of it so that she couldn't push the door open and back in. Perhaps as a punishment for my lack of compassion, for my un-dog-loverness, I was unable to go back to sleep and lay on my back for what seemed like hours having the darkest hour before dawn thoughts of loneliness and despair, and then the mediocre thoughts of the awake too early in the morning women. I wonder if Henry will have sex too early? My god, they never gave me a copy of Sophie's IEP before school let out! Should I email that director of the SPED office right now to ask him what the hell? What the hell, anyway? I read a Lydia Davis short story. It was 4 am and then 5am. I served my time, fell back asleep.

Orange and Pink: Stirring Things Up

I wish those of you who aren't could be a part of the discussion on my Facebook page about an article I posted today called Why Do President Obama's children go to a segregated school? Here's the link, and I'd love to hear what you think. I'll start you off with the same thing that I said when I posted it. As soon as I get their permission, I might post some of the other comments because they're incredibly enlightening -- on both sides of the debate.

Elizabeth Aquino

21 hrs · 

Please read and think about it. And if you have children in a private school, let me know if your children have any classmates with disabilities.

Why do President Obama’s children go to a segregated school?

Not one of Sidwell Friends School’s more than 1,100 students has a physical disability.                                       

THEHILL|BY JENNIFER LASZLO MIZRAHI

I can't do this anymore

When Sophie's teacher calls and tells me that the speech pathologist, Mr. Red Who is Purple, is not going to recommend that Sophie continue receiving AAC services, I say What? but I think I can't do this anymore. There's a tightrope, a line, a balancing act, a cliche, and then there's I can't do this anymore. I spent much of yesterday sunk deep in my articulate thoughts, I can't do this anymore a banner overarching bullets of clarity. Oliver slept with me last night, his heart sick over our friends' moving away. When I got out of bed this morning, he was lying asleep on his back, his head turned to the side, chin up, his arm thrust out straight like a fencer, prepared. And when I hugged Henry before he walked away to catch his ride to school, I closed the door, and the sun muscled through.

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.

Engaging Students with Learning Disabilities

You must watch this if you're interested in education, in inclusion, in children with learning disabilities, etc. and then share it, please!

Watch Engaging Students With Learning Disabilities Early On on PBS. See more from PBS NewsHour.

Someone's telling our story, and it looks fine:

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.