#6 Maybe and a Bit of Civil Disobedience

I realized only now that I didn't reassure all of you who so kindly commented on my last post about Sophie not being able or wanting to bear weight on her right leg. She went to bed last night with "the issue," but when she woke up this morning, it was not "an issue." I commented on my Facebook post in response to that, but I didn't do so here. Basically, I think we can say that the #6 Maybe from my previous post wins out this time. I emphasize this time because the initial post -- however perceived -- was meant to express the oft-maddening aspects of longtime caregiving, particularly when the person you're caring for is non-verbal or completely dependent on you. In any case, rest well. At least right now, in this moment, Sophie is walking around like normal. Who the hell knows why this has happened a couple of times? A friend asked me what the neurologist would say. I told her that The Neurologist would probably shrug her shoulders and not know. I believe I've said enough times that equal to the anguish and sorrow of learning Sophie's diagnosis and then witnessing her refractory seizures -- and I mean equal -- is the lesson learned that physicians and The Powers That Be do not know everything or even, sometimes, anything. There are moments when only brutal humor sustains me (and no, prayers do not sustain me -- neither mine nor yours, although I do appreciate the thought!) and last night was one of those times. Hence my flippant list.

Behind all humor is sadness, said Mark Twain, and that adage is so very true for me most of the time. There's also anger and frustration and weariness.

Oh.

Sometimes behind humor is just plain humor. In the picture above, Oliver is shouting through his new megaphone. He spent the weekend down in Orange County with dear friends, one of whom is a sucker for all things Oliver wants and therefore bought him this real, battery-operated megaphone. Good Lord, ya'll. That thing is loud. This morning, Oliver shouted a stream of invectives (no curse words) toward the construction workers and contractors working behind our house at building another McMansion. I have to admit that it was really funny with no sadness behind it, and I felt sort of proud to be raising a hell-raiser in addition to a teenager who is besotted with his used car and a near twenty year old that so resiliently deals with seizures, drug withdrawal and weird right legs that won't obey her.

More Idle Thoughts, Not Idyll

A power line running through a piece of a branch

My friend Jeneva Stone wrote a remarkable comment on her Facebook page about disability, white privilege and the whole Ferguson and now New York injustices. Here's a bit:

Many people have posted articles about how difficult it is for whites to understand the grief and outrage of black persons--that we don't experience the sort of societal prejudice they do--it's masked for us. Well, I do, and the overwhelm of that is one of the reasons I haven't been vocal. Everyone's Facebook feed is different. Mine is regularly filled with stories about the abuse and even murder of people with disabilities: children left in classrooms during fire drills because their IEP didn't specify how to remove them from a burning building; systemic patterns of abuse at institutions designed to "house" disabled persons that result in their deaths; people with disabilities killed by their own families; children denied life-saving operations not because they are too ill, but simply because they're disabled and their lives are considered worthless; parents fighting for necessary medication for their children not just with private insurers, but with the state. I know your pain, mothers of children with darker skin than mine. I do. My son faces mortal threats from the state and society every day--no, my fears aren't identical to yours, but do they have to be?

It made me think about being female, apologizing for being vocal and opinionated -- even to my own family when my beliefs and passions run contrary to theirs. It made me think of how uncomfortable I felt with my closest friends during a movie that repeatedly used the word retard, how, when I expressed my feelings about it, I felt almost embarrassed. Catered to. Tolerated.

Oh, Elizabeth. Don't you have enough on your plate?

Why does anyone take seriously a bunch of men in long red robes and weird hats who claim to be direct links to God, who turn wine into Jesus' blood and bread into his body, as well as stand in for God and absolve you of your sins? Oh, and tell you, if you're a woman, that you're not allowed to do so?

When I was a child, someone closely related to me said, You know, a lot of slaves loved their masters and were actually better off as slaves than free. It didn't set right with me even back then when I was about eight years old, so the whole idea that we're somehow "victims of our culture," or using the excuse that "that's what they were taught then," or "it was a different time," doesn't fly.

I know people who believe Palestinians are animals. I know people who believe Jews are taking over the world.

Enough is enough.

#CrimingWhileWhite

Thoughts (Not Rants) for the Day on Disability and Worth and the Supposed Welfare State

*** I'm re-posting this because I don't have anything to say today other than some paltry words about how weird it is to read of the ALS organization's request to patent the words "Ice-bucket Challenge" as their own and to continue to wonder how effectively they'll use the nearly $100 million dollars that they raised. Since my reservations about non-profit foundations and the way they conduct business in this country were met so vociferously and rudely the last time I voiced them, I'll stick to issues that I know of very intimately, like this one.

I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.

There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.

What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence  to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.

First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.

I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.

What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.

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.

Highway Thoughts on Help and Stress

This morning I drove west to my annual OB/GYN appointment and blew my news blackout to listen to Morning Edition on NPR. They did a segment on stress and the effects of stress, how most stress reported has to do with chronic health issues -- people reporting that they themselves are ill or someone in their family is ill or needs help because of disability. I don't feel like looking up the link, but I'm sure you can google it on the interwebs and listen yourself, if you're so inclined. I nodded my head at all of it, of course, but was most struck by a statement about Americans' unique hesitancy to ask for help. Our culture is, of course, one of rugged individualism and self-sufficiency which is courageous and optimistic at best and selfish, unrealistic and downright sociopathic at worst.

As I crept westward on the 10, I mulled over this and was reminded of the video I made with Erika and Phil several years ago about extreme parenting. New readers here might not have seen this video, but in a nutshell, I asked people who care for children with disabilities or those who have lost children to disease to take a photo of themselves with a poster stating what they wish they could say to their younger selves on the day of their child's diagnosis. While I wish there had been more diversity represented in the finished video (I used what I got!), the responses were rich and varied. By far, though, the most common advice parents had for their younger selves was "Ask for help," and "Accept help." I think there's a little of that cultural thing going on here, for sure, and I also think there's some control stuff -- when your world is turned upside down, and you realize that we actually have very little control over our children's lives, you tend to control what you can, and at least for me, I might have thought (unconsciously) that what I could control, I'd do myself. Initially, doing it myself made me feel empowered, in control, in charge and confident. After a while, though, at least for me, I was exhausted, burnt out and incredulous that this caregiving was going to be forever. I won't even talk about what the effects on friendships, on relationships with family and even marriage have been because -- well -- that's no blog post. Despite the insanity, I rarely did ask for help or even accept it when offered. I'm being utterly honest here when I say that this might be one of my only few real regrets of my early years with Sophie (pushing more forcefully for full inclusion in school being the other one).

Just some thoughts as I ambled down the highway toward the paper gown that ties in the front and the speculum.

That being said, I thought I'd post the video here again so that you can watch it and perhaps share it, particularly with those who might be just now entering this strange, lonely, often hellish and overall wondrous world of extreme parenting.

Sometimes, if you yell loud enough, yammer on enough and yoke the Powers That Be,

you can yodel in joy. I pulled out of my driveway this morning to go to an appointment and saw all this hullabaloo on the street.

Those are curb cuts going into our neighborhood. Remember when I wrote that open letter to our councilman? I'll be honest. That probably would have been as far as I'd take it. If you haven't figured it out already, I'm beat and bushed, bitter and nearly broken. I might be able to write a good letter and make some calls (years and years worth of calls), but I was basically just extra pissed the day I pressed publish. Perhaps ten years ago or so, I might have just put on a hard hat, gotten Oliver to go buy me a jackhammer with his lemonade stand money and done it myself. But, these days? I'm closer to being my Italian grandmother -- you know -- the one who walked around with a rosary, muttering pray that I die, pray that I die. Well, several wonderful folks in my neighborhood read it and jumped on it and encouraged me to pursue it. We all did it, and lo and behold, it worked. Thank you.

Yup and Yessiree Bob.

Inclusion, Disability, Iraq, and THCa

There's so much to ponder these days, don't you think? There's that Tumbler going around written by a young woman who cares for her disabled 31 year old sister because her parents died. They live in California and are facing the alarming lack of services and obstacles to getting those services that those of us who already live here are aware of to a nauseating degree. I and some other folks are "on it," though. Stay tuned. Then there's an interesting discussion on my own Facebook page, centered around this article, about the segregation of children with physical disabilities from the elite private schools in Washington, D.C. Some of the commenting got a little testy, including my own, but it's discouraging to think that in 2014, we're still having to not just fight for equal access and inclusion for all children but continue to bring awareness to these issues -- even in the biggest most progressive states in the country.

Sigh.

On another note, our more than a decade long war that resulted in hundreds of thousands of lives lost, thousands of those Americans, trillions of dollars spent and country bankrupted both financially and morally, seems to be imploding again.  That foreign policy "initiative" might have been the worst one our country made in history. And if I have to see or hear that crazy John McCain say anything else about it, I might scream. Honestly, the man should just retire to his hometown in Arizona and play golf. What do you think? Should we just continue to bury our heads in the proverbial sand or protest in some concrete way?

What do I know, though, about anything really? It's a full moon tonight -- the Honey Moon -- and while Sophie's seizures have picked up a bit, maybe because of it, I'm looking forward to seeing it from Calabasas where I'll be driving Henry later for his first club lacrosse practice. In the meantime, for the record, we've added THCa to Sophie's cannabis regime. I'll keep you posted.