Thursday, February 20, 2014

Extending Acceptance to Myself

For the last few days, I've been down. Actually more then down. Sad, irritable, moody, anxious. I've been laying awake at night worrying over so many things: who likes me, who doesn't like me, who thinks I am awful person, oh no maybe I am an awful person, am I not doing enough with Jude, the homeschooling has been sucky, my writing is filled with errors, why if I am smart did I not get into graduate school, maybe I'm not smart and I've been deluding myself all these years, why am I so big? why can't I stop eating? I feel gross from all the eating but here I am pinning all kinds of cake recipes on Pinterest. This is my brain for the last few nights. This is kind of my brain all.the.time. Of course I'm getting little sleep and this doesn't help the self-defeating chatter that lulls me into a restless sleep most nights.

The other morning, I was sipping my coffee, and settling into my daily dose of anxiety when I started to wonder if maybe I was depressed. Depression does tend to prowl up on me and pounce and still has to bat me around for awhile before I notice it's there. But it seemed an odd fit this time. I was uncomfortable with the idea. Wrote a status update about it and deleted said update. Depression didn't feel right. I was anxious yes. Pretty down about some things. I was feeling insecure. Feeling like a failure. Yes. Check. All these things that come along with depression but...there was something off. Despite some snappy bs with the homeschooling kids, I was pretty content in my home life. I was happy with the few friends I had made in this little town. Spring is around the corner so I had been outside with the sun warming my skin. I had even got to enjoy a little snowcation in between the spring days. Is it possible, I wondered, to feel depressed about what a loser you are but be not depressed about your life? That would be a new one even for me, I thought.

But as I sipped on my coffee, thinking about some posts I wanted to write, I started to think about my own experience with what is likely ADHD. I wasn't sure if I was ever properly diagnosed (I was not I asked my mom) but I remember a childhood that clearly pointed to this category. I was the kid who was constantly out of her seat, who was in dream land (as my teacher's called it) most of the time. I sort of remember being insulated from the jeers and mocking because I wasn't really quite there. But I also remember that whatever made me think the way I did and act the way I did was not a good thing.

"Sit down and be still."
"Can't you stop moving?"
"OMG, stopping talking. All you do is talk."
"Calm down!"
"Stop chewing..your pen, your pencil, your crayon, your clothes, your hair."
"Don't click that pen."
"Stop moving your legs!"
"Just look at this desk. It's a mess!"(I was actually kept back a grade for a messy desk even though I was academically "advanced.")
"Snap out of your dream world."
"Earth to Ginger!!"

And really things didn't got much better when I grew up. I had an English professor tell me he couldn't understand how I could be so smart in class and yet be such a horrible writer. My proofreading skills were dismal (and still are as you've no doubt noticed) because I couldn't sustain the attention to proofread. My spelling skills were lacking and I often used less complicated words so I didn't have to figure out how to spell something correctly. What I could spell was often jumbled with all the right letters in the wrong order. But even with this, college was better than most other places. In college, my ability to focus on many different topics was an asset. I still think I switched from English to Religious Studies because RS allowed me to explore many different areas aka I never got bored. And boredom plagued me. I was always bored. Bored with relationships, bored with school work, bored if a book or movie got too long. Hell if a party went over three hours, I got bored.

Thinking about all this, I wondered why I was so afraid to own or to at least explore my own mental world that many consider a disability. As I finished up my coffee, I went to a site that gives you all the "symptoms" for ADHD. I hit 90% of them. I even read them to my son who cautiously nodded agreement on each one. I also found out that people with ADHD are 7 times more likely to experience depression and anxiety. And a light bulb went off in my head. I kind of think that what's been happening in Athens has little to do with depression and more to do with ADHD.

Being inside my body is rather akin to being inside some place very loud, very noisy and very bright. I think it's why I sometimes have mini break downs when I'm in crowded bright places. Overload. There is a constant stream of chatter, ideas, thoughts, memories and pictures all at once. When I am in school or a very structured job, I am forced to kind of wade into that storm and fish out what I need to function. I do this with very structured to do lists, and with deadlines. I've been quite successful at following through (my professors would have preferred more careful work I'm sure and a lot more proofreading) with papers, etc. But that said it took me six years to finish my BA and another four years to finish my MA (I got distracted. For real.). When we moved to Athens, I went from a great part time job that allowed me enough focus and rigidity to structure my life a bit to a life totally untethered by an external schedule. I've been floating on this sensory overload for three years now. THREE YEARS.

And because I couldn't manage it, I felt like a failure. This feeling bleed into other aspects of my life that I was already feeling pretty low about. Like not getting into grad. school. If I had only studied harder for the GRE, I would be in school right now. If I wasn't so lazy, careless, irresponsible, etc. It's always been pretty easy to beat up on myself. It became even easier when I wasn't tethered to a job or to school. My do lists mocked me as sad little attempts to make myself feel important. Each time I couldn't fulfill a bullet on the list, I abused myself mentally. I called myself names. I sneered at the girl who thought she was smart enough for a Ph.D. I snickered at her dreams to be a writer. "Look at you," I snorted, "What a loser you are! You can't even focus enough to do the damn dishes. Your kids are feral! You can't write a sentence without eight spelling mistakes. You're not only not smart, you're not committed." I started to eat uncontrolably, often eating myself into sickness. I would consume bags of Hershey kisses without even pausing to taste the flavor. The eating was automatic. And that lead to even more self-hate "You're huge!" You have zero will power!" What kind of person eats until they are sick?" "You're disgusting." This is my head nearly every day.

What occurred to me the other morning after I got done reading the lists that so explained me was that here I was fighting so passionately for my daughters to find acceptance in the world, I had forgotten to give myself that same radical acceptance. I had a million reasons. I wasn't officially diagnosed. I was just looking for an excuse to be a minority. People were going to scoff at me. I was just trying to excuse my innate laziness. But what I realized was that I owe myself a chance at this acceptance. I owe myself a chance to explore a road that may make it easier for me to accept what is going on in my head, to live with myself. To figure out a way to work with me rather than abuse myself.

This is partially why I need a Facebook break. Facebook in some ways is wonderful for me. The constant flow of such different information is exciting and interesting. (H said it's like the Walmart of the screen). But it's also really really hard for me to negotiate so many different social relationships, to figure out the nuance of one conversation and not carry that nuance into another. I make a lot of missteps while I try to handle the social media world, and have alienated a lot of people unwittingly (sometimes wittingly and I'm okay with that part of it). I end up being really anxious over these things, and then I just kind of explode from too much. This is why I have to keep going away for awhile. But this time I also really want to pursue a diagnosis and look at ways to work with the ADHD. I am even allowing myself to be open to the ideas of meds. This may not be a full time thing but I think that at least right now I need something to help me get through all the noise.

And mostly I just need to spend some thinking about what radical self acceptance is going to look like for my mind. What will it mean to re-frame ADHD as not something negative but as something positive?

Friday, February 14, 2014

Thinking About Love

Yes, yes, I know it's very common place to be thinking about love on Valentine's Day but if it helps ease your worry at me being common place, it's not necessarily romantic love I've been mulling. The Boycott Autism Speaks movement (which I 100% support) is having a flash blog today called "Love Not Fear." Of course being us we never did get anything off the ground although C and I discussed it a bit. C is always puzzled that people want to end Autism and the hate shown towards those with Autism. She's also puzzled at race hate as well. "It doesn't make sense." she'll tell me. She gets very angry when she hears people use the "R" word, and she tears up that people say awful things about those with Ds. Whenever people comment on how Autism has stolen their child or made them child a "robot," I think about these moments with C. C doesn't always process emotion the way I do but she is an incredibly feeling and compassionate child (most of the time, she's a kid and she has a lot of siblings ya know).

And I started thinking about love even more. I am in love with my family so deeply. I love my kids with an intensity that is frightening. My biggest fear is hands down losing those I love. Even the thought of living without my children and husband is a dark space that I can't really touch without feeling a little sick to my stomach. I have struggled with this love over the years because it scared me. I didn't feel worthy of the love I get in return. I was scared that something was going to happen and that I was going to lose this love. I'd do things to put a distance between H and I. I'd try to hold everyone a bit away and to close off tiny bits of myself in an attempt to not get hurt. But in the end, I decided to abandon myself to this love. To let go and fall.

Last night I started to think again about love, and about acceptance. A bit back I wrote that I thought we could love our children but that oftentimes we don't respect them, and I was called on that by a few bloggers. This is what came to mind last night when I thought about love not fear because I sometimes think love and fear are not mutually exclusive. Let me piece this out.

I try to live my life in awareness that dichotomy are just that dichotomy. I am not convinced that we can not place love into the categories of real and false. I think sometimes that love leads us to us places that don't look the way we imagine love in a perfect world. Sometimes love leads us to be petty, narrow little people. Sometimes love makes us feel scared.

Here's what I'm getting at. What happens when you have a child that has a condition or is rather diagnosed with something that you have been taught to fear your whole life? Does the fear you feel at those words mean you don't love your child? I can't answer this for everyone but I can answer it for myself. Yes. Resoundingly so. I loved Camille even as I began to suspect that she might have Autism. And I loved Jude even when I got the call that she had Down syndrome. I never stopped loving my children even as I was tormented with fear about what these words might mean.

For a very brief amount of time I began to understand what people were doing when they said "I love my child but I hate Autism/Down syndrome." For a brief time. People say this as a way to avoid having to make a big mental shift in how they think about these conditions. If they can think about their child as separate from these things, they can then go on to keep loving their child but have a way out of accepting their child as is.

This is where I think the part about acceptance is a big deal when we come to think about love over fear. Love over fear means that we didn't love before rather it means that we have to push through what we fear to come to a new understanding about things that used to frighten us. And we have to do a lot of soul searching about the kind of bias that lead us to fear that thing in the first place. Acceptance is vital here. Because when we accept our children for who they are, when we stop fearing that something that can't be separated from our children, we not only choose love but we choose to love without fear.

And it's not this is love more real but perhaps we can say it's more just. Love, the kind of love that changes the world, always means letting go of our preconceived ideas about things. For me that meant some intense reexamination of my ideas about intellectual disabilities. It's also meant that I have had to lay my parenting pride aside and listen to other voices. It's meant that I have to go against some pretty accepted mainstream ideas about therapy, etc. Accepting my children has also meant in a hard but beautiful way accepting myself; coming to realize that a lot of the things about my self that I have stifled or hated or felt ashamed of were things that I could be celebrating or at least accepting instead of suppressing.

Love is so much harder and complicated then the romantic dreams I envisioned when I was a lonely and awkward teenager. The romance books I consumed hadn't quite prepared me for the love I encountered in this world. I spent many years being in love with people who loved what they imagined they could change about me. They loved the way that my body could look if I only stopped eating so much. They loved the way my mind could be if I read better books or went to college. They loved the way I could be if I wasn't so depressed/emotionally damaged. They loved the way I could be if I could hide the quirks, the social anxiety. But it wasn't until I meet H that I found someone who love me for who I was, who accepted me as given. And over the years, I have begun to heal, to come out of the walls I hid behind. It's amazing what blooms when one is accepted and loved for all their many selves. And when I realized this, when I realized how freeing it was to be accepted how could I not wish this for my children? I do not wish to take away anything from them. They will grow and change into different beings each year as happens with us all but I will do my damnedest to ensure that this growing and shaping happens in a space where they are accepted. This is why I will not change my child to fit the world but demand that the world change to fit my child.

Sunday, February 02, 2014

The Act of Telling

I started my first blog years ago. When I first began homeschooling, I used blogging as a way to record the day to day with Beastie Boy. At the time, I was also in graduate school, and since so much of that was starting to leak onto the other blog, I started Green Tea Ginger, taking my name from a box of Tzao Tea. In the early years, the blog was often silly, sometimes academic but rarely personal. There was a reason for this. I published something, I can't even remember what, that upset H because he felt it was too personal. We fought. I got angry, deleted the blog, and sulked for a few days. If I couldn't publish what I wanted, if I felt constantly censored then forget it. But after the pity party, I realized that this was not my life alone I was recording. I didn't have the right, as an ethical person, to write about about a life shared unless all those who partook in the sharing had a say. And from that point on, I kept things pretty surface.

Until I started to work on my thesis which was on telling and how telling is not just about making sense of realities but also about shaping realities. Someone suggested I write my own stories as a way of experiencing this writing. This is when my blog took a turn toward the personal. And it's also began the moment when I started to have to seriously ponder the ramifications of tellings. Because telling is never done in isolation. Beyond just the obvious considerations of those whom share your life, there are broader societal issues about who gets to tell, and what gets to be told. 

When I had Jude, and began to write about disability all these thoughts, planted so long ago, began to coalesce. Since leaving the academy,  I had begun to write more and more about my life. About my children. I had tentatively told stories about my relationship with Beastie Girl 1. And I had been told I was brave for sharing those words. I'll admit to a little thrill at these words. Being called brave gave my sad insecure self a little boost. And of course like most of us I had been conditioned into thinking that telling all was a brave thing. But even then I was confused about why it was brave to say I had a shitty experience with my kid and I kind of messed it up. Not because of her but because of my expectations and how I reacted to what she was trying to tell me. It wasn't until I had Jude that I knew. Brave was the word claimed by special needs parents. It took bravery to raise "these" kids after all. Brave was the word used by others to mark "our" experience.

But is telling all really such a brave act? Or is it a dangerous kind of shaping? A kind of story telling that is making it okay to apologize to those who kill their children with disabilities? In other words are these narratives shaping the very experience of those with disabilities? Are these tellings shaping how society sees our children? Wonder if our eungenic problem isn't about abortion but about telling?

Let me back up. I didn't blog much for the entire year of 2012. Looking back I wonder why. I had a lot going on. I converted to Catholicism. I was pregnant. I found out my fetus had Down syndrome. But I didn't blog a whole lot. I wanted to. My impulse was to pour out all the shit I was thinking and feeling on this space. But I didn't. I was depressed. Had been depressed for over a year (and not because of Jude...depressions isn't always about having a "special needs kid."). What stopped me was that what I was experiencing was ugly and personal. Too personal to put out there. It didn't need to be put out there. It certainly wasn't going to help me nor was it going to help anyone else. After I knew about Jude, I worried that it would effect how others saw Jude, and I didn't want this to happen. What I was feeling was about my own shit not about her reality, and I knew how powerful words can be in shaping how people see others. Even in the depths of the worst of my feelings, I knew this wasn't even remotely about Jude but about me. About yucky selfish me who had some shit to work through.

What I have come to realize is that it is not brave to keep sharing the same damn narrative about grief and despair over a Ds diagnosis. It's not brave to perpetuate that you lose you child to Autism. Or that Autism is something to feel sorry for.  It is not brave when your fear of something that you see as so different colors your entire perception of your child. Fear of difference too often leads to violence, and your supposed bravery of talking about that fear as something valid, as something that really is to be feared excuses that violence.

While you may have the right to your experience (and frankly I think is you get right to be racist, ableist, sexist?), what you have to consider is that your experience is not your own. At least this is what happened to me. I don't get to tell Jude's story, or rather I could but if I do that I play into the power that already strives to keep Jude separate, oppressed different. I am creating a story that I certainly am involved in and will help to write over the years but it is not only my story and if I over share I do more to make it more my story than hers. When I stopped awhile back to think about what this means, I realized that this collaboration means me stepping back, about choosing to not let this be about me. This is about Jude, and about her right to be a fully human person in this world. This is about Camille and her right to be a fully human person in this world. I am their parent, their guardian, their teacher, and I have a choice. I can choose to tell a story that makes it about me. Or I can step back and wait until they tell their story (something which is happening beautifully with Camille). And while I wait, I will write not about the burden they are on our life (they're not by the way), nor about how they are super heroes. Rather I will continue to write about the injustice they face in this world. I will remember that the words I put out there are an act. An act that can build up the structures of power as they are, or an act that tears down and rebuilds.