[Trigger warning: fairly graphic description of physical, emotional, sexual abuse.]
April is "let's make autistics hate themselves!" month. It's also child abuse awareness month, though you don't hear much about that. They talk all about the devastation wreaked by autism, but you barely hear anything at all about child abuse. That's fucked up, in case you were wondering.
There have been a couple murders of disabled people recently, murders by family, and the general caregiver reaction seems to be to pull into little self congratulatory circles and say that it can't be true, it must be an aberration, they and no one they know would do that. Parents of autistic kids are fucking saints.
Let me tell you, that is not the case. My parents are not saints, and my story is middle of the road based on what a lot of autistic people I know have said to me. Parents of autistic kids want us to shut up and not say this, they want to erase our stories, but that does no one any good. Trying to erase our experiences helps no one, even if it does make parents feel better for a few days. Don't dare step that close to abuse apologism, it is not acceptable.
Now I am going to tell you about some of the things my parents did when I was growing up. And yes, if you empathize with them I absolutely believe you are a horrible person.
So let's start with a brief description of my family structure, because it's kind of effed up: I have a mother, and my half-siblings' dad is on my birth certificate. They got divorced, I have a stepmom via my not-really-dad, and am on my second or third stepdad on my dad's side. Annnnd I have a biological father. Annnnnd a lot of siblings. Got all that?
We'll start by talking about when I was young. Both my mom and not-really-dad were spankers, by which I mean "kid, you have pissed me off and I am going to vent my spleen on your bony little ass," and, in my mom's case "also your face because your ass is really fucking bony." Offenses that got me hit until their hands hurt include such awful things as flapping, not being able to stop giggling, zoning out (both of which can be manifestations of seizure activity), arguing, and not understanding a statement or direction. That's right, these people were hitting a kid with language comprehension delays for not comprehending language. And I do mean hitting. Hard. Bruise leaving. I got a black eye and a cut across my cheek once from my mom; I was about 6 or so. The offense? Freaking out because shampoo got in my eye.
As things got more stressful and they divorced, these people got worse. My mother would absolutely lose her shit and hit me for no reason. She would scream and scream and scream at me, usually while I was stuck in the car with her. Then when I covered my ears or cried, she'd hit me and pull my hair. She did this once and then chased me around with a camera to try to get pictures of the ensuing meltdown, threatening to send them to everyone in school.
Go read that again. That's emotional abuse on top of physical. Contrary to what Autism Speaks thinks is a fucking awesome idea, triggering meltdowns intentionally to document it to show people is fucking emotional abuse.
But this was a thing she did frequently. She'd be pissed off about one thing or another, looking for a fight, and I wasn't exactly in tune enough to avoid her. Unlike my siblings I didn't have friends whose houses I could vanish to for days at a time, so I was stuck with her. She'd want a fight and she'd pick and pick, she'd file her nails in my ears-this is not a sound I can tolerate on the same bus as me, much less right next to my ears-and she'd start calling me disrespectful and yelling and demanding an explanation when I covered my ears. No explanation was ever ok, and she'd keep yelling and yelling until I lost my shit, then she'd keep yelling. Or she'd touch me and it'd startle me and that'd be the most offensive thing in the world, again with the yelling. Or she'd try to have a conversation, but it'd be about why I didn't have friends or couldn't be normal or wasn't girlier or whatever. Then no matter what my answer had a "tone" or my face had a "snotty expression." Nothing I could do was right.
Regardless of the method she used, the result was always a meltdown that would.not.end. She wouldn't back off no matter how I asked, & I wasn't big enough or strong enough to shut the door & keep it closed until I was about 14. She'd keep yelling and poking and trying to argue until I was completely nonverbal, biting myself, and too exhausted to keep crying. Then she'd try to hug me and all I wanted was for her to go. away. but she wouldn't. And she'd tell me it was love and she just wanted to "help me".
A favorite technique during the meltdown provocation procedure was to throw absolutely terrifying threats on top of the sensory poking and the demanding the impossible. The first time she threatened to have me put in foster care I was 7 years old. I believe it was over leaving the room because she was smoking and filing her nails (which she told me she loved more than me when I was 13), but that could be inaccurate. So many minor offenses got this treatment. As I got older she started threatening to have me locked up in a mental ward. I am deathly, deathly terrified of confinement and always have been. My mental images of both foster care and mental hospitals come from a combination of my mother's words and Lifetime television, which did not help the abject terror-and abject terror is not exactly conducive to calming down. My mother later leveraged this fear by instigating meltdowns intentionally-she always did love that game-and then calling police saying she was afraid of me. Now is a possibly relevant time to mention that when I last saw her, she had 4 inches and at least 50 pounds on me. Physically imposing, I am not, and lashing out at people who are not directly touching me is not a thing I ever did.
Ok, so now an interlude to talk about my not-really-dad and his new wife. I still went to visitation over there because we have the same last name and, to his credit, he was pretty awesome until he got remarried. His new wife resented the hell out me though-I still don't know why, really; it's not my fault the guy signed the birth certificate knowing damn well I'm not his.
My not-exactly-stepmom has really delicate little feelings. I have never been the most tactful of souls, and frankly, a grown woman allowing an 11 year old to upset her enough to storm upstairs until said 11 year old apologizes is not the most mature of things. The unpredictability & unreasonably high standards for knowing what would set her off were one thing.
The not allowing me to eat and dragging me antiquing is quite another. I'm not talking "not allowing junky snacks". I'm talking "over 24 hours without food." I'm talking "if you were that hungry you would have apologized for hurting Diane's feelings." It does not work that way. Trying to starve an apology out of a 12 year old is unacceptable. I had a seizure in the antique store-one of very few tonic clonics I've had aside from The Year Of The Seizure. I woke up to being yelled at for being an attention seeking little hobag. Again, I was TWELVE.
Shortly after that her son stuck spitballs on my bedroom door and he blamed me (which makes no sense) so I had to sit in the living room an entire weekend, except breaks every 6 hours to go to the bathroom. Not long after that I hurt her feelings again and she threw a corncob and a glass of wine at me. Another few weeks, and her son was spreading awful shit about me around the neighborhood, he denied it, and then I was again relegated to a chair in the livingroom for...I don't even know what the offense was. Just that apparently there was one.
The last time I went over there I was 14 years old. Stepmonster's sister and nephews were in town. A stepbrother, a nephew, a sister and I were down in the basement by the computer. My stepbrother told my stepcousin (well, semistep people but whatever) that it was really fun to see how far my arm would twist behind my back-this is nothing that I ever let anyone do, ever. So my semistepcousin twisted it, I said nonostopstop, and my semistepbrother told him to twist it further. My arm popped out of my socket.
All the way out of the socket.
Like any child who thinks their parents aren't utter sacks of shit would do, I ran upstairs, arm flopping, totally screaming-I have a high pain threshold, but dislocations that don't immediately reduce hurt like hell. My semistepmother and her sister started yelling at me for being a big baby and making a scene.
My arm was hanging entirely out of its socket. A scene was utterly appropriate.
I begged my not really dad to take me to the hospital to get it fixed. He refused. I begged him to take me home. Again, he refused. I walked 15 miles from his house to my mom's house, in the rain, on the highway, with my dominant arm out of socket.
My mother couldn't take me to the doctor until the next day because she was already drunk. To this day it has some laxity beyond what my other Ehlers-Danlosy joints have.
Now we're back to mom's house. As you may recall, my mom was a hitter. Most people who hit their kids stop when their children get big, strong, and/or bold enough to hit back. But not my mother!
The first time I fought back, I was maybe 12. I didn't even do anything that violent back; she was going to slap me for something and I caught her arm. This is the day I got my first dent in my skull. She was so enraged that I caught her arm that she threw me at my bed-at that point there was nearly a 100 pound weight difference-and jumped on top of me. She banged my head into the metal bedframe multiple times and punched me repeatedly. This is the first time I feared for my life at the hands of my mother.
About that time my stepdad started sexually abusing me as well. He had always been a yeller, which terrified me, but there is no terror like a giant coming to the night to try to make you respect him by using his penis as a weapon. I still have the knife I used to defend myself under my pillow, & carry three physical scars...one for screaming, one for fighting, one for biting.
He wasn't above physical intimidation in broad daylight either. On my 16th birthday I had to jump out the window to get to school because he had his 250 pounds planted against my door, keeping me inside, because I wouldn't bring up my laundry before school started. That was the day I knew my mom knew he was sexually abusing me-she said she did not want to hear anything bad about him unless he was stark naked about to rape me. And then I knew she knew.
But back to my mother. As I got older, and stronger, she wanted me weak. She had always given my siblings lunch money, but I had to earn mine through babysitting. Rarely did I eat school lunch from about 13 on; the option of taking a lunch doesn't work when there's nothing to take. My gymnastics coaches and some teachers took to feeding me, because I drop weight very quickly indeed. By this point most of my siblings were living with their dad or in their own places, so they didn't suffer the no-food-but-Hot-Pockets years.
My mother continued to pick fights, and continued to get physical. She learned restraint for work and thought it was a great idea to pick a fight with me to practice. Let me tell you first hand, it is impossible to breathe. Those are not safe techniques. They are completely not conducive to calming the fuck down. Putting your teenage daughter in a baskethold and dislocating both her shoulders in the process is abuse. Pulling handfuls of her hair out is abuse. Digging a knee into her back is abuse. I feared for my life from the time I was 12 on because of how unpredictable and how physical my mother was willing to be, and over things like sensory issues.
They terrorized me physically, emotionally, and sexually, all while telling me they loved me. They used systems, including the medical and law enforcement systems, to keep me in a state of constant terror. There are other things that aren't on here, there are details I cannot deal with writing out.
Do not dare tell me that parents cannot be monsters. I lived with monsters. I am not a monster for making you think about it. They are monsters for doing it, and anyone who tries to excuse it is as well.
Do not erase my story. Don't fucking dare say this shit doesn't happen. It happens every day.
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Sunday, April 1, 2012
Saturday, April 30, 2011
Some reflections on Autism Miseducation Month
(This was originally titled reflections on Autism Hysteria Month, but someone pointed out the origins of hysteria as a word and that's no good, so now we're on miseducation. -K)
Thank $DIETY it's over.
This month in the public sphere, we had atrocities like PBS's Autism Now (which ignored autistic adults entirely as not important; only parents matter). We had atrocities like the NHL's Face Off Against Autism. We had the ridiculous Light It Up Blue thing. Blue is totally going to make people more educated, right? Everything was against autism or for awareness.
Still people are settling for 'awareness'. But awareness is not an end unto itself, or shouldn't be. Big Autism is happy if people are 'aware' that their tragedified version autism exists-that brings donations for cure research. I hypothesize that Big Autism doesn't want people actually educated on autism, for then they may determine that supports, not cure, are what is needed and what is ethical to fund.
In my real life, awareness has done nothing but harm this year. STOP telling me I am broken. STOP telling me that I am an exception, I'm not. I am not special in the autistic world, not really. We are all unique and yet we all share so much.
In my real life, "awareness" is leading to a teacher trying to force me out of a class. I have a 4.0 GPA, am a former high level athlete, and he is afraid I cannot handle rock climbing, because of "awareness". The fight I am forced into because of "awareness" is not something I have the bandwidth for, yet here I am doing it. I will probably collapse from burnout before it is over, as I am running on fumes and stubbornness right now.
Awareness doesn't cut it in 2011. It won't cut it in 2012. Educate people or shut the hell up-awareness as your whole goal does not help us. It hurts us. And contrary to what you think, you are hurting really real people with the fallout from your scare tactics.
Thank $DIETY it's over.
This month in the public sphere, we had atrocities like PBS's Autism Now (which ignored autistic adults entirely as not important; only parents matter). We had atrocities like the NHL's Face Off Against Autism. We had the ridiculous Light It Up Blue thing. Blue is totally going to make people more educated, right? Everything was against autism or for awareness.
Still people are settling for 'awareness'. But awareness is not an end unto itself, or shouldn't be. Big Autism is happy if people are 'aware' that their tragedified version autism exists-that brings donations for cure research. I hypothesize that Big Autism doesn't want people actually educated on autism, for then they may determine that supports, not cure, are what is needed and what is ethical to fund.
In my real life, awareness has done nothing but harm this year. STOP telling me I am broken. STOP telling me that I am an exception, I'm not. I am not special in the autistic world, not really. We are all unique and yet we all share so much.
In my real life, "awareness" is leading to a teacher trying to force me out of a class. I have a 4.0 GPA, am a former high level athlete, and he is afraid I cannot handle rock climbing, because of "awareness". The fight I am forced into because of "awareness" is not something I have the bandwidth for, yet here I am doing it. I will probably collapse from burnout before it is over, as I am running on fumes and stubbornness right now.
Awareness doesn't cut it in 2011. It won't cut it in 2012. Educate people or shut the hell up-awareness as your whole goal does not help us. It hurts us. And contrary to what you think, you are hurting really real people with the fallout from your scare tactics.
Saturday, April 9, 2011
More Consequences of Awareness
Kay.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).
A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".
I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.
But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".
I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.
Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...
None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.
"Unclip."
"uh, what"
"Unclip. There seems to be negative energy and emotions.:
"...what"
Blah blah unsafe blah blah not concentrating blah blah frustrated.
"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".
"Unclip & we can have a discussion"
"...I want a cognitive interpreter..."
Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.
No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.
I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.
Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.
Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!
Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!
Except we aren't. If this is 'awareness', ignorance really is bliss.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).
A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".
I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.
But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".
I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.
Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...
None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.
"Unclip."
"uh, what"
"Unclip. There seems to be negative energy and emotions.:
"...what"
Blah blah unsafe blah blah not concentrating blah blah frustrated.
"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".
"Unclip & we can have a discussion"
"...I want a cognitive interpreter..."
Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.
No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.
I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.
Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.
Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!
Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!
Except we aren't. If this is 'awareness', ignorance really is bliss.
Tuesday, April 5, 2011
Be aware of THIS
This was my 2008 Autism Awareness Month post.
Ah April, the true cruelest month, at least if you are autistic or sympathetic towards autistics and what we really think. "Autism Awareness Month", they call it. Awareness of what? It seems more and more to be awareness that many parents feel cheated because they didn't get the typical or supertypical child they feel they so richly deserved, a month of awareness of how the PARENTS feel they suffer, a month of awareness of all the things they are putting the child through to put themselves out of their misery. Quackery awareness month, even, but of course no one will come out and call a spade an effing shovel because autistic people don't count in this society. That's right, it's a f*ing shovel.
With that in mind in this vomitous puzzle piece bedecked month, here are some things to keep in mind if you intend to "do something for awareness" or are bombarded by people who are (or are asking you why you aren't):
1. "Awareness" is not the same thing as information. I can get 10,000 people to wear a puzzle ribbon pretty easily but that doesn't mean they know a blessed thing about autism. "Awareness" is crap.
2. "Awareness" is a vague goal, in addition to being crap. Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people. Awareness that many parents think that ohnoesvaxxeenzeetbabeez and they need to follow their GooglePhD protocol to rescue them and need YOUR MONEY to do it? That particular faction shouts the loudest. Note how few autistic people are served by "awareness".
3. Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories. Even if we don't talk, we can hear and pick up on the attitude that exudes from these pieces.
4. Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves. Conversely, if other people happen to notice us being ourselves more during April, that isn't necessarily us "acting out", but so called awareness making people more aware or self conscious or whatever. The rest of the world can suck it up and deal.
5. Consider that we may not want to read every article on autism, go to every (or even ANY) autism event, or watch every program. See dehumanizing, above. This holds especially true for anti cure folks and those of us who have more than had our fill of the dehumanizing vomitous pity party garbage.
6. Be AWARE of not just the "valiant struggling parents", but also the children and adults who are doing well, the ones who aren't doing well, and the ones who are doing what THEY consider well and are happy.
7. Be especially AWARE of the autistics who's parents, caregivers, and others bought into their own self pity and have done terrible, often irreversible things to them. NEVER EVER forget those who are no longer with us, for the crime of being autistic.
I really hate Autism Awareness Month. For my part, I will be being myself and perhaps breaking out a couple of my more pointed neurodiversity shirts. That's about it. I don't do big bursts of awareness.
Ah April, the true cruelest month, at least if you are autistic or sympathetic towards autistics and what we really think. "Autism Awareness Month", they call it. Awareness of what? It seems more and more to be awareness that many parents feel cheated because they didn't get the typical or supertypical child they feel they so richly deserved, a month of awareness of how the PARENTS feel they suffer, a month of awareness of all the things they are putting the child through to put themselves out of their misery. Quackery awareness month, even, but of course no one will come out and call a spade an effing shovel because autistic people don't count in this society. That's right, it's a f*ing shovel.
With that in mind in this vomitous puzzle piece bedecked month, here are some things to keep in mind if you intend to "do something for awareness" or are bombarded by people who are (or are asking you why you aren't):
1. "Awareness" is not the same thing as information. I can get 10,000 people to wear a puzzle ribbon pretty easily but that doesn't mean they know a blessed thing about autism. "Awareness" is crap.
2. "Awareness" is a vague goal, in addition to being crap. Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people. Awareness that many parents think that ohnoesvaxxeenzeetbabeez and they need to follow their GooglePhD protocol to rescue them and need YOUR MONEY to do it? That particular faction shouts the loudest. Note how few autistic people are served by "awareness".
3. Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories. Even if we don't talk, we can hear and pick up on the attitude that exudes from these pieces.
4. Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves. Conversely, if other people happen to notice us being ourselves more during April, that isn't necessarily us "acting out", but so called awareness making people more aware or self conscious or whatever. The rest of the world can suck it up and deal.
5. Consider that we may not want to read every article on autism, go to every (or even ANY) autism event, or watch every program. See dehumanizing, above. This holds especially true for anti cure folks and those of us who have more than had our fill of the dehumanizing vomitous pity party garbage.
6. Be AWARE of not just the "valiant struggling parents", but also the children and adults who are doing well, the ones who aren't doing well, and the ones who are doing what THEY consider well and are happy.
7. Be especially AWARE of the autistics who's parents, caregivers, and others bought into their own self pity and have done terrible, often irreversible things to them. NEVER EVER forget those who are no longer with us, for the crime of being autistic.
I really hate Autism Awareness Month. For my part, I will be being myself and perhaps breaking out a couple of my more pointed neurodiversity shirts. That's about it. I don't do big bursts of awareness.
Alternative Autism Awareness
This is a repost from April 2006. It's one of the first blog posts I ever wrote ever.
Autism Awareness Month?
Or is it "Fundraise for cash to get rid of autistics month"? Anyone who isn't AWARE by now lives under a rock. So. What do we do about it?
I propose an alternative way of celebrating. Forget the fundraisers. NAAR, CAN, DAN!, MOMA, AutismWeeps, all those organizations can piss off. Let's make people REALLY aware of autism.
When April rolls around, I make a point of stimming in public. A LOT. Not hiding the lack of eye contact. Wearing shirts that I made myself and the one I have from ANI that have autism-positive wording. I've been known to make people "talk" to me in writing. Sensory simulations for NTs, done well, will make them aware all right, but it's important to emphasize that it's the world's turn to change, not ours. We've adapted to their world since the beginning.
If I could get the gig, I'd talk to school kids about autism and how it isn't bad, just different. Get them while they're young. Teaching autistics about their unique brains is another one I want to do on a larger scale. We need more "unique", "talented", "what a great kid!" and less "emergency," "epidemic," "tsunami" language.
The most important thing isn't getting rid of the ghastly puzzle ribbon (though I sure wish we could!). It is making people aware of what we are good at, as a group and individually, instead of just where our weak spots are. Educating people that being autistic is OK. Even being nonverbal is OK (alternative communication anyone?). Teaching them that cure isn't the answer, but instead meeting us halfway. Teaching them that abuse isn't necessary to for us to learn skills.
We don't need Autism Awareness Month. We need Autism EDUCATION Month. Educating educators, parents, other professionals, random kids and adults in public, and educating OURSELVES. This is what we should be doing. If only the big organizations could see it...
Autism Awareness Month?
Or is it "Fundraise for cash to get rid of autistics month"? Anyone who isn't AWARE by now lives under a rock. So. What do we do about it?
I propose an alternative way of celebrating. Forget the fundraisers. NAAR, CAN, DAN!, MOMA, AutismWeeps, all those organizations can piss off. Let's make people REALLY aware of autism.
When April rolls around, I make a point of stimming in public. A LOT. Not hiding the lack of eye contact. Wearing shirts that I made myself and the one I have from ANI that have autism-positive wording. I've been known to make people "talk" to me in writing. Sensory simulations for NTs, done well, will make them aware all right, but it's important to emphasize that it's the world's turn to change, not ours. We've adapted to their world since the beginning.
If I could get the gig, I'd talk to school kids about autism and how it isn't bad, just different. Get them while they're young. Teaching autistics about their unique brains is another one I want to do on a larger scale. We need more "unique", "talented", "what a great kid!" and less "emergency," "epidemic," "tsunami" language.
The most important thing isn't getting rid of the ghastly puzzle ribbon (though I sure wish we could!). It is making people aware of what we are good at, as a group and individually, instead of just where our weak spots are. Educating people that being autistic is OK. Even being nonverbal is OK (alternative communication anyone?). Teaching them that cure isn't the answer, but instead meeting us halfway. Teaching them that abuse isn't necessary to for us to learn skills.
We don't need Autism Awareness Month. We need Autism EDUCATION Month. Educating educators, parents, other professionals, random kids and adults in public, and educating OURSELVES. This is what we should be doing. If only the big organizations could see it...
Saturday, April 2, 2011
Loving Lamposts
"He knows he used to have autism and that makes him sad."
This statement in the documentary Loving Lampposts has been haunting me. It is among the most tragic sentiments I've ever heard. My heart aches for that child-not because he 'had' autism, but because who he is is seen as shameful. His brother was described as "having some of the same thought processes as autistic children...but if anything, he's gifted."
And attitudes like that, attitudes that autism is a horrorshow and we're all doomed to utter incompetence, is why Loving Lammposts gets happy flappies from me.
Why?
This documentary leaps in where angels fear to tread: Todd Drezner interviewed people on all fronts of the autism wars. He talked to Jenny McCarthy. He talked to people selling quack treatments. He talked to cure-oriented parents buying those treatments. He talked to true believers in the vaccine hypothesis. He talked to scientists, experts, and 'experts.' He talked to acceptance-focused parents. And he talked to autistics.
Representing all factions in the often heated discussion about autism is no easy task. How can it be, when one group is convinced another is malignantly misguided, and another is convinced that their opposition wants their kids to fester, and more people are convinced an autistic isn't an autistic if they have an opinion on autism? It's hard enough to wrap your head around the idea-now try presenting all viewpoints in a respectful manner in a fairly short documentary. Yeah, like that's possible.
Except apparently it is, because Loving Lampposts is exactly that. Everyone has their say. Even we have our say, which doesn't happen in the autism world much.
Through interviews, Drezner put human faces to all the views on autism. That's something that gets lost in the heat around autism-that everyone involved is a human. The parents who are frantic to fix their 'broken' kid are human. Those kids? Also human. The parents who are striving not to fix but understand? So human that I wanted to reach out and give some hugs. And their children? And the autistic adults? Three dimensional really real people.
I've been anticipating this documentary since I met the production crew at AutCom in 2007. It was worth the wait-I've been recommending it to everyone who wants to know about the autistic community, the autism communities, and their relationships to each other.
Loving Lampposts is a slice of getting it that exceeded my expectations. A++, would watch again (and again...and again...and again).
This statement in the documentary Loving Lampposts has been haunting me. It is among the most tragic sentiments I've ever heard. My heart aches for that child-not because he 'had' autism, but because who he is is seen as shameful. His brother was described as "having some of the same thought processes as autistic children...but if anything, he's gifted."
And attitudes like that, attitudes that autism is a horrorshow and we're all doomed to utter incompetence, is why Loving Lammposts gets happy flappies from me.
Why?
This documentary leaps in where angels fear to tread: Todd Drezner interviewed people on all fronts of the autism wars. He talked to Jenny McCarthy. He talked to people selling quack treatments. He talked to cure-oriented parents buying those treatments. He talked to true believers in the vaccine hypothesis. He talked to scientists, experts, and 'experts.' He talked to acceptance-focused parents. And he talked to autistics.
Representing all factions in the often heated discussion about autism is no easy task. How can it be, when one group is convinced another is malignantly misguided, and another is convinced that their opposition wants their kids to fester, and more people are convinced an autistic isn't an autistic if they have an opinion on autism? It's hard enough to wrap your head around the idea-now try presenting all viewpoints in a respectful manner in a fairly short documentary. Yeah, like that's possible.
Except apparently it is, because Loving Lampposts is exactly that. Everyone has their say. Even we have our say, which doesn't happen in the autism world much.
Through interviews, Drezner put human faces to all the views on autism. That's something that gets lost in the heat around autism-that everyone involved is a human. The parents who are frantic to fix their 'broken' kid are human. Those kids? Also human. The parents who are striving not to fix but understand? So human that I wanted to reach out and give some hugs. And their children? And the autistic adults? Three dimensional really real people.
I've been anticipating this documentary since I met the production crew at AutCom in 2007. It was worth the wait-I've been recommending it to everyone who wants to know about the autistic community, the autism communities, and their relationships to each other.
Loving Lampposts is a slice of getting it that exceeded my expectations. A++, would watch again (and again...and again...and again).
Thursday, November 11, 2010
What's a Rescue Medication?
I keep referencing rescue medications. Turns out not everyone knows what that is! Not everyone with epilepsy needs one, and there are rescue meds for other conditions-nitroglycerin for angina, for example.
For me, a rescue medication is something taken as needed to stop clusters of seizures. I try to take half a clonazepam during an aura since most of my seizures bring company.
That doesn't always prevent a seizure, but it seems to reduce severity and duration of what does happen. Having a rescue medication has made living a very active life easier because it can be the difference between a cluster of 3 and a cluster of 30 seizures.
For me, a rescue medication is something taken as needed to stop clusters of seizures. I try to take half a clonazepam during an aura since most of my seizures bring company.
That doesn't always prevent a seizure, but it seems to reduce severity and duration of what does happen. Having a rescue medication has made living a very active life easier because it can be the difference between a cluster of 3 and a cluster of 30 seizures.
Wednesday, November 10, 2010
Epilepsy and Gymnastics
This one is another "in my experience" one. This is in no way shape or form medical advice, and in fact I have met doctors who think that my choice of sport was evidence of a subconscious deathwish.
I've been participating in some form of gymnastics or another for years. I've had epilepsy for years. Most of these years overlap. I've dealt with medication changes, seizure fallout, side effects, and all the other joys while also enjoying a high-flying sport.
My primary form of gymnastics was tumbling and trampoline. My best event was always tumbling because everything is entirely what I can do with my own power. Sometimes my skills were a bit sluggish, but they weren't ever scary or particularly dangerous. Trampoline was my worst because you have to hit the trampoline 10 times and every change in body position or proprioception is magnified by the elasticity of the trampoline. It's also easy to get a little off if you aren't able to focus. Double mini trampoline is only 2 skills, so it was my best when I was sluggy. The worst I experienced with epilepsy meeting tumbling and trampoline was having a partial complex at a meet. I had to withdraw after my coach realized that everything I was doing during warmup was autopilot. I've never had a tonic-clonic while in the air.
I did artistic gymnastics as well. Floor was my best event for much the same reason tumbling was--it's what you can do under your own power--so even when I was a bit wonky, I could make something work. I was very good at beam in practice. At meets or during a medication change, beam went to hell because it's all about precision and attack, which I do not have when my body feels alien. Postictally I was pretty awful at beam, but nowhere near as bad as I could be on vault. Vault involves running as fast as you can at a stationary object and hitting a springboard exactly correctly so you can fly over it. Speed doesn't happen postictally. Visual perception doesn't happen postictally. I know exactly how hard I can run into a vault, and the answer is rib-dislocation-hard. Uneven bars was the hardest for me because being even a little off makes it hard to muscle through things, and every time my body or brain changed I had to completely adjust the timing of moves. It was never a strength problem, just a consistency issue.
I came mightily close to seizures at a couple of artistic meets because of the techno floor music trend, so I did compete while heavily benzodiazepined a few times. Sluggish gymnastics lead to sluggish scores, but I didn't ever get hurt, fortunately.
There were a few things I needed to do to make taking epilepsy to the gym relatively safe. First, I needed to get very familiar with the difference between "aura" and "I need to eat/I'm working too hard/I'm tired/side effects". Second, I needed to disclose to my coaches that I have seizures, what they look like, and what to do if they occur. We needed to discuss a seizure plan, and for a period of time I kept rescue medication in the gym office. Third, during every medication change I had to chart side effects that might matter & we had to adjust expectations during workouts and competitions. For a while I was playing catch-up with private lessons since a particularly hard period made learning anything impossible.
My coaches ended up learning a few of the subtle signs that indicated a seizure was imminent. We had an agreement that they could send me for a snack & ask me to get off the equipment if I was worrying them. If I needed to take a rescue med, it was fine and I didn't need to announce it. Part of our agreement was that I was to wear medical identification at all times gymnastic & I was to carry a seizure protocol card in case they weren't the very first people around if I seized.
There was a lot of planning involved, but I got to do the sport I love in face of prejudices that say I shouldn't have. I still love gymnastics-it makes me feel invincible, like I can fly, and I wouldn't trade that experience for anything.
Tuesday, November 9, 2010
Anticonvulsants & me
I've been on a shitton of antiepileptic drugs. People always ask me about them, their effects and side effects. So here we go, with the good, the bad, and the whatthefuck. These are in no particular order.
Tegretol: I really liked Tegretol. It was absolutely amazing for my seizures (both times I took it). Unfortunately, it ate my blood cells for breakfast (twice). Seizure free, alas, I felt like crap.
Trileptal: I did not so much like Trileptal either time I was on it. Both times I took it, I was extremely uncoordinated and my brain didn't work. It made me sleepy-for me, a plus-but it didn't actually work for the seizures. As in I started having frequent absences and had a few drop seizures. It kind of sucked.
Topamax: I took Topamax from 2003 until 2010. I really did well on it for the most part, though my effective dose went up and down depending on what else I was taking at the time. I did get a bit of cognitive dulling, but it wasn't bad and it did teach me left from right. I got kidney stones as well, and did have a few borderline tests of kidney function, which is why I stopped taking it.
Zonegran: I took this twice too. It worked, ish, and made me sleepy at first but that always wears off quickly. The first time I got a bit of a facial rash, but nothing severe, and the second time it seemed to aggravate my kidney stones. It made me slightly stupid but nothing I couldn't have lived with had it worked.
Lamictal: Yet another twice tried, twice failed. It worked more or less, and even eliminated an ongoing headache. I really wish that I could take Lamictal. Alas, I got the rash. Twice. The first time it was bazingly obvious; the second we thought it was recurrent sinus infections until I sneezed out my sinus lining. It was so cool. Disgusting, but amazing.
Keppra: I love Keppra. A lot. It more or less works for me. It makes me happier. It made me less dumb. I started taking it right after a significant car accident. Significant is a word which here means "I forgot how numbers work". Within 6 months my math and language skills were back.
Neurontin: I took Neurontin for a few years. When I first started it, I forgot how to get from point A to point B. After a few months I acclimated, which is why I was on it for years. It made me sleepy every time I changed my dose, which was a plus, but it stopped working for my seizures and I felt very overmedicated at the time.
Gabatril: This was a short lived experiment. In theory it would replace Neurontin, but it didn't. I felt extremely spaced out and wasn't particularly coordinated. Since it didn't seem to work, either, we stopped it at about 3 weeks.
Clonazepam: For a long time this was just an emergency medication. I had a phenomenal amount of emergencies, so we added it to my daily regimen for 6 months or so. Going off wasn't hard, and I did not feel as drugged as one would expect. If there were side effects, I did not notice them.
Lorazepam: This was my emergency medication while I was on clonazepam daily. It worked pretty quickly for me and was somewhat sedating. If there were side effects other than sleepiness, I am unaware.
Diazepam: I took this as an emergency medication at one point also. Since it has a long half life, it was ideal for use during hormone swings that bring on seizures. It's not particularly sedating for me.
Temazepam: Yet another rescue medication. My theory during the time I took it was that it knocked me out and gave me a hangover so that I didn't notice seizure activity. Nothing in my life has ever made me sleepier.
Vimpat: This is the most recent addition to the list. I switched to Vimpat from Topamax in mid-2010. I got some headaches and experienced both dizziness and vertigo, but so far it is absolutely worth it. I have had 2 six-week seizure free spells since the switch; that is a really big deal for me. I've had some anxiety that may or may not be related to the medication as well, but the trade off is something I am willing to live with.
Tegretol: I really liked Tegretol. It was absolutely amazing for my seizures (both times I took it). Unfortunately, it ate my blood cells for breakfast (twice). Seizure free, alas, I felt like crap.
Trileptal: I did not so much like Trileptal either time I was on it. Both times I took it, I was extremely uncoordinated and my brain didn't work. It made me sleepy-for me, a plus-but it didn't actually work for the seizures. As in I started having frequent absences and had a few drop seizures. It kind of sucked.
Topamax: I took Topamax from 2003 until 2010. I really did well on it for the most part, though my effective dose went up and down depending on what else I was taking at the time. I did get a bit of cognitive dulling, but it wasn't bad and it did teach me left from right. I got kidney stones as well, and did have a few borderline tests of kidney function, which is why I stopped taking it.
Zonegran: I took this twice too. It worked, ish, and made me sleepy at first but that always wears off quickly. The first time I got a bit of a facial rash, but nothing severe, and the second time it seemed to aggravate my kidney stones. It made me slightly stupid but nothing I couldn't have lived with had it worked.
Lamictal: Yet another twice tried, twice failed. It worked more or less, and even eliminated an ongoing headache. I really wish that I could take Lamictal. Alas, I got the rash. Twice. The first time it was bazingly obvious; the second we thought it was recurrent sinus infections until I sneezed out my sinus lining. It was so cool. Disgusting, but amazing.
Keppra: I love Keppra. A lot. It more or less works for me. It makes me happier. It made me less dumb. I started taking it right after a significant car accident. Significant is a word which here means "I forgot how numbers work". Within 6 months my math and language skills were back.
Neurontin: I took Neurontin for a few years. When I first started it, I forgot how to get from point A to point B. After a few months I acclimated, which is why I was on it for years. It made me sleepy every time I changed my dose, which was a plus, but it stopped working for my seizures and I felt very overmedicated at the time.
Gabatril: This was a short lived experiment. In theory it would replace Neurontin, but it didn't. I felt extremely spaced out and wasn't particularly coordinated. Since it didn't seem to work, either, we stopped it at about 3 weeks.
Clonazepam: For a long time this was just an emergency medication. I had a phenomenal amount of emergencies, so we added it to my daily regimen for 6 months or so. Going off wasn't hard, and I did not feel as drugged as one would expect. If there were side effects, I did not notice them.
Lorazepam: This was my emergency medication while I was on clonazepam daily. It worked pretty quickly for me and was somewhat sedating. If there were side effects other than sleepiness, I am unaware.
Diazepam: I took this as an emergency medication at one point also. Since it has a long half life, it was ideal for use during hormone swings that bring on seizures. It's not particularly sedating for me.
Temazepam: Yet another rescue medication. My theory during the time I took it was that it knocked me out and gave me a hangover so that I didn't notice seizure activity. Nothing in my life has ever made me sleepier.
Vimpat: This is the most recent addition to the list. I switched to Vimpat from Topamax in mid-2010. I got some headaches and experienced both dizziness and vertigo, but so far it is absolutely worth it. I have had 2 six-week seizure free spells since the switch; that is a really big deal for me. I've had some anxiety that may or may not be related to the medication as well, but the trade off is something I am willing to live with.
Monday, November 8, 2010
My brain is not your punchline.
I've been searching twitter for the #epilepsy tag.
A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.
No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.
Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.
A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.
Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.
You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.
A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.
No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.
Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.
A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.
Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.
You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.
Sunday, November 7, 2010
Hit by a Neurological Truck
This is my last generic "so tell me about your epilepsy" post. I'm casting about my brain for topics that aren't wangst now, bc 23 days of "people with strobe lights and subwoofers should DIAF would get real old real fast.
The night this picture was taken (and I don't remember taking it) I had had a number of seizures. A double digit number of seizures. I looked and felt like shit.
That's pretty much the standard post seizure thing. I can't really focus. I feel like I got hit by a truck. Words aren't really happening. Understanding language may not be happening. Coordination, not happening. Visual processing, not happening. Moving fast, not happening. I'm tired, have a headache, afraid of stairs because they look funny, probably not really so good with the sense making, a little wobbly, and if I can process what you say, I've got receptive logic, but I don't have the language for expressive logic.
Right after a seizure I can sign but not speak and I want to sleep and don't want to move and I look like that. I actually probably do want company, and I probably want said company to talk to me as long as they aren't upset. I don't know why either, it's just a pattern. I guess if I feel like shit, at least I'm not alone feeling like shit.
I remember pretty much nothing from the few hours following a seizure, to the point of not always knowing how I got where I am. Good times, right?
The day after I look and feel like crap too, but I can usually get through the day. It's a headachey, cognitively screwy, very tired functioning, but it is functioning.
The day after the pic at the top:
First Responders & Me.
One of the topic suggestions I was given was "how to handle any paramedics or police officers who should happen to arrive during a seizure". This is very much a my-preferences entry. Other people will have different protocols. Some of them may even involve not being terrified of first responders and law enforcement and hospitals.
Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.
So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!
He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.
The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.
Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.
Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.
The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.
Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.
So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!
He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.
The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.
Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.
Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.
The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.
Saturday, November 6, 2010
Repost-10Hz lights
This went up on my old blog about a year ago. Reposted for Epilepsy Month.
They're everywhere. But they don't need to be. It's actually probably illegal for them to be as many places as they are.
Yeah, I get that I can't go clubbing. I don't care that I can't go clubbing, particularly. But I do care that walking through downtown is fraught with hazards. Not just being chased down the street by aggressive panhandlers (true story) or someone taking a stoplight as a suggestion or thinking they've got right of way on a right turn because they're bigger (that happens too), but 10 Hz lights.
Everywhere.
They're on emergency vehicles, which I don't really get. You're going to create another emergency on the way to your already existing one, buds. There are other flash frequencies if you just can't give that up, I promise! There are whole STUDIES on what's least likely to trigger seizures in epileptic people. Since police officers are reluctant to, oh, read medical IDs, really, it's in their best interest to just stop triggering seizures already. And paramedics? It's damned irresponsible of you to leave so much havoc in your wakes. You should know better.
They're the way of alerting pedestrians (you know, people who don't drive? In this great state, incidentally, Thou Shalt Be Seizure Free for at least a year to drive legally) that someone is pulling out of a parking garage. Someone who feels they have right of way because their SUV outweighs you by a couple tons. Yep! Mid aura I am TOTALLY paying attention to that strobe light. I'm looking for the fastest way past it, which is a straight line. Past the SUV. And I *get* an aura.
The public transit system has been failing pretty hard too. I will end the next driver who flashes his lights at me. I will end more ferociously the next who tells me to get a strobey thing so as to be seen. I wear neon orange hoodies. They can see me, and I can actually function while wearing one! Amazing! The lights on the trains tend to flicker while going over bridges. And yesterday, they were giving strobe lights to bikers. What. The fuck. Steady beam, motherfuckers, you can use one.
Bikers, you aren't superior either. Your headlight? 10 Hz. I don't really care that your bike is greener than a bus. Your headlamp makes me want to call you horrible nasty things, assuming I can summon the language. Why does it need to flicker at all? Is there a reason for that? A sizeable portion of my first million, and hipster/socially aware bragging rights, to the first person to make a neurologically friendly lamp. I'm sick of having this conversation IRL, and sick of justifying to near total strangers "you're in good shape. Why don't you do the commute by bike thing?". "well, you see, ending up a mangled mess because I lost awareness of my surroundings because of my own headlamp isn't how I want to be remembered". "you'd be fine". "no. I wouldn't. And you don't matter enough to me for a demonstration".
And then, in the most ill conceived idea in the history of ill conceived ideas...and there have been a lot...some either extremely ignorant or extremely hateful jackass decided that the ideal thing to put on a fire alarm is a FUCKING STROBE LIGHT. Not a red light. Not something changing colors. A fucking EEG grade strobe light. Yes, a visual something is needed to be accessible to the Deaf. That doesn't mean that folks with epilepsy need to die of smoke inhalation/status epilepticus/wandering straight into flames because of the direct effects of a supposed safety device. Fuck that with the business end of a rake. It's not acceptable.
Now go point this out to an 'enlightened' person. I live in a liberal city. There are a lot of them. "But you don't, you know, have a DISABILITY". 'Scuse me? Pretty sure that's not your call, sweetcakes, and if all these things are barriers--and they are dangerous barriers--that's textbook social model (not to mention all the medical crap with epilepsy). Then there's all the crap about if it's that bad, don't go places, or THOSE places, or don't go there alone.
Yeah. No. This is what accessibility means. There's no reason I shouldn't be able to walk down my street, or from place to place downtown, alone. The flashing lights all over are the barrier. They're not even a difficult barrier to change, if people get past "that's the way it is"ness. I'm not asking to go to a dance club safely. I want to know that walking through public areas of my city isn't going to send me home dazed, confused, headachey, crabby, and postictal.
That should be a right. It should go without saying. Is it really that much to ask?
Friday, November 5, 2010
Partial WHAT?
The majority of my seizures are partial complex seizures. In my case, they live in the right temporal lobe. Left temporal lobe are more common, but I always did have to be difficult.
What that means is that a part of my temporal lobe says "hey, I'm bored! let's change it up!" and starts in with the unregulated activity. All of the unregulated discharges stay in the temporal lobe, rather than spreading to the entire brain (which causes generalized seizures, which are what most people think of when they hear the word "epilepsy").
Partial complex seizures can happen in any part of the brain, and each location looks different. Common seizure manifestations, depending on location, include hearing or seeing things that aren't there, random out of nowhere feelings and emotions, wandering, movements called automatisms (things like chewing air, lip smacking, picking at clothes), tingling in the extremities, and generally acting strange.
My seizures tend to involve language problems-no matter what is said to or around me, I respond with "I dunno". Apparently I sound disconnected, even by my standards. I stop what I'm doing, or half-ass keep going & chew on air and do...this THING...with my hands. Like my thumb and forefinger are drawing circles around each other. I do something very similar under stress, but not identical. Apparently there's a "lights are on, nobody's home" facial nonexpression going on, and if I was standing when it hit I tend to wander around aimlessly (as contrasted with after, but that's another post).
Everyone thinks of tonic clonic seizures as the real thing, but partial complex have caused me more problems. Police (and for that matter, pretty much everyone else) assume drugs rather than a medical issue if someone is standing there chewing on air and wandering vaguely with a vacant expression. That's just not the case. It's written on my medicalert, but who reads that? And since grabbing my arm is a good way to freak me out-even in a seizure, it's absolutely possible to trigger an automatic NO GO AWAY reaction-I live with the knowledge that something I cannot help may get me killed or injured at the hands of those who are supposed to help.
Since partial onset seizures are the most common, contrary to what Red Cross first aid training implies, that's kind of scary.
What that means is that a part of my temporal lobe says "hey, I'm bored! let's change it up!" and starts in with the unregulated activity. All of the unregulated discharges stay in the temporal lobe, rather than spreading to the entire brain (which causes generalized seizures, which are what most people think of when they hear the word "epilepsy").
Partial complex seizures can happen in any part of the brain, and each location looks different. Common seizure manifestations, depending on location, include hearing or seeing things that aren't there, random out of nowhere feelings and emotions, wandering, movements called automatisms (things like chewing air, lip smacking, picking at clothes), tingling in the extremities, and generally acting strange.
My seizures tend to involve language problems-no matter what is said to or around me, I respond with "I dunno". Apparently I sound disconnected, even by my standards. I stop what I'm doing, or half-ass keep going & chew on air and do...this THING...with my hands. Like my thumb and forefinger are drawing circles around each other. I do something very similar under stress, but not identical. Apparently there's a "lights are on, nobody's home" facial nonexpression going on, and if I was standing when it hit I tend to wander around aimlessly (as contrasted with after, but that's another post).
Everyone thinks of tonic clonic seizures as the real thing, but partial complex have caused me more problems. Police (and for that matter, pretty much everyone else) assume drugs rather than a medical issue if someone is standing there chewing on air and wandering vaguely with a vacant expression. That's just not the case. It's written on my medicalert, but who reads that? And since grabbing my arm is a good way to freak me out-even in a seizure, it's absolutely possible to trigger an automatic NO GO AWAY reaction-I live with the knowledge that something I cannot help may get me killed or injured at the hands of those who are supposed to help.
Since partial onset seizures are the most common, contrary to what Red Cross first aid training implies, that's kind of scary.
Thursday, November 4, 2010
"What the hell was THAT?" "nng, seizure"
This one'll probably be quick, easy, with very little swearing.
The first comment on my I-need-ideas post asked what my physical signs are before a seizure. I can do that! So, here it is. This is just what I know, because there are things apparently that other people can call out, but I don't know exactly what they are.
There's no warning before an absence seizure. They're really short, so I don't often notice them anyway. My eyeballs just roll up a little, eyelids flutter a bit, and I sometimes lose a little muscle tone. It kind of looks like I'm nodding and rolling my eyes.
Before a partial-complex there are some actual signs. For some reason I tend to have rapid fire absence seizures right before a partial complex-and this is completely neurologically backwards, but it's a consistent pattern. As soon as you point out to me that I'm having seizures, I will deny it heartily. I'm not sure if the quality or forcefulness of the denial is in any way related to the likelyhood of having another seizure, but it might be.
I lose a lot of facial expression before a seizure, sometimes my right hand starts shaking-I try to hold it still, because that totally helps, right?-and my eyes glaze a little bit. My speech changes, in that I stutter or just use very few words. I sign in a lot of environments and situations, but if I'm using sign to pull language and not really succeeding, I'm either really overwhelmed or on my way to seizureland.
The way I act changes too. There's this oh-god-oh-god-I-am-going-to-seize feeling, but by the time I get there I'm really spaced out, so the panic this incites isn't exactly effective panic. I get really passive and unable to make decisions beyond "yes or no", and sometimes even that is too complex. If I trust someone, right before a seizure I will pretty much take their advice or suggestions uncritically. That's nearly as unlike my usual me as it gets! If I know it's coming, I want to be away from people and sounds & do my best to make that happen.
Before a tonic-clonic seizure, I usually have a partial complex, & I only have them when subjected to multiple precipitating factors. Yay progress!
My in-case-of-seizure preferences are tonight or tomorrow. Riveting read, amirite?
The first comment on my I-need-ideas post asked what my physical signs are before a seizure. I can do that! So, here it is. This is just what I know, because there are things apparently that other people can call out, but I don't know exactly what they are.
There's no warning before an absence seizure. They're really short, so I don't often notice them anyway. My eyeballs just roll up a little, eyelids flutter a bit, and I sometimes lose a little muscle tone. It kind of looks like I'm nodding and rolling my eyes.
Before a partial-complex there are some actual signs. For some reason I tend to have rapid fire absence seizures right before a partial complex-and this is completely neurologically backwards, but it's a consistent pattern. As soon as you point out to me that I'm having seizures, I will deny it heartily. I'm not sure if the quality or forcefulness of the denial is in any way related to the likelyhood of having another seizure, but it might be.
I lose a lot of facial expression before a seizure, sometimes my right hand starts shaking-I try to hold it still, because that totally helps, right?-and my eyes glaze a little bit. My speech changes, in that I stutter or just use very few words. I sign in a lot of environments and situations, but if I'm using sign to pull language and not really succeeding, I'm either really overwhelmed or on my way to seizureland.
The way I act changes too. There's this oh-god-oh-god-I-am-going-to-seize feeling, but by the time I get there I'm really spaced out, so the panic this incites isn't exactly effective panic. I get really passive and unable to make decisions beyond "yes or no", and sometimes even that is too complex. If I trust someone, right before a seizure I will pretty much take their advice or suggestions uncritically. That's nearly as unlike my usual me as it gets! If I know it's coming, I want to be away from people and sounds & do my best to make that happen.
Before a tonic-clonic seizure, I usually have a partial complex, & I only have them when subjected to multiple precipitating factors. Yay progress!
My in-case-of-seizure preferences are tonight or tomorrow. Riveting read, amirite?
Wednesday, November 3, 2010
What I Refuse to Sacrifice.
There are things that it's not wise to do with epilepsy. Scuba diving comes to mind, and as much as I'd love to try it, the rationale for passing on it until a year of oh so elusive seizure freedom makes sense to me. I understand why the powers that be don't want me to drive. But other than that?
I did high level competitive gymnastics & tumbling and trampoline with epilepsy. I teach the sport, and hope that no child in my care feels held back or feared because of a condition. I social dance (I know, I'm autistic. It works for me. Just go with it, I'll explain some other time). I have friends, and refuse to isolate myself in case of seizures. I go places all alone on the bus and on the train and on planes and by foot. No one is my keeper, nor should they be. As much as the general medical model paternalistic society would rather I didn't, I cultivate my independent streak and display it proudly.
The philosophy "Live as though each day is your last, and plan as though you'll live forever" is kind of where I am with things. I'd rather take some risks now instead of never get to experience things. Some precautions (medicalert bracelet, fairly liberal disclosure, living with a roommate, forgoing scuba diving) are reasonable. But I can't and won't live wrapped in them.
I wonder if dispelling some of the fear and manufactured mystery about epilepsy would reduce the well meaning encouragement to completely avoid risks? Maybe I'll know in my lifetime.
I did high level competitive gymnastics & tumbling and trampoline with epilepsy. I teach the sport, and hope that no child in my care feels held back or feared because of a condition. I social dance (I know, I'm autistic. It works for me. Just go with it, I'll explain some other time). I have friends, and refuse to isolate myself in case of seizures. I go places all alone on the bus and on the train and on planes and by foot. No one is my keeper, nor should they be. As much as the general medical model paternalistic society would rather I didn't, I cultivate my independent streak and display it proudly.
The philosophy "Live as though each day is your last, and plan as though you'll live forever" is kind of where I am with things. I'd rather take some risks now instead of never get to experience things. Some precautions (medicalert bracelet, fairly liberal disclosure, living with a roommate, forgoing scuba diving) are reasonable. But I can't and won't live wrapped in them.
I wonder if dispelling some of the fear and manufactured mystery about epilepsy would reduce the well meaning encouragement to completely avoid risks? Maybe I'll know in my lifetime.
Tuesday, November 2, 2010
Epilepsy awareness month!
November is epilepsy awareness month.
I'm not so big on awarenessitis, but seeing as no one I know really knows squat about seizures, I'm going to try a few things.
For some background, I've got partial complex, absence, and occasionally generalized motor seizures. Primarily the partials live in my right temporal lobe, & they're classified as medically refractory.
I've been on a number of medications, I'm not a candidate for cortical resection, and VNS is something that I'd like to explore, maybe, but I'm actually pretty happy with what I take now.
So, what I am doing for Epilepsy Month is:
a) Posting something at least vaguely related every day. It may be something I wrote after having a bad day or misunderstandings, it may be 101 info, it may be a "ha ha, listen to this ridiculous thing I did postictally! Epilepsy is serious, but I don't have to be" kind of thing.
b) Tweeting at least one fact-thing a day (I have way more non neurodiversity type followers than readers).
and
c) making 101-110 level fliers and handing them out. Everywhere. ESPECIALLY places where I interact with people.
But I need your, yes your, help! I'm at the point where I don't remember what's 101 info and what's eyeballs-glazing-over technical. Or what questions people have. So leave 'em in the comments! Please? Otherwise I'm going to end up with a month of BAAAAAAAAAAAAAAAWWWWWWWWWW PEOPLE ARE WEIRD ABOUT EPILEPSY! posts and really awful fliers. That'd be tragic, right?
I'm not so big on awarenessitis, but seeing as no one I know really knows squat about seizures, I'm going to try a few things.
For some background, I've got partial complex, absence, and occasionally generalized motor seizures. Primarily the partials live in my right temporal lobe, & they're classified as medically refractory.
I've been on a number of medications, I'm not a candidate for cortical resection, and VNS is something that I'd like to explore, maybe, but I'm actually pretty happy with what I take now.
So, what I am doing for Epilepsy Month is:
a) Posting something at least vaguely related every day. It may be something I wrote after having a bad day or misunderstandings, it may be 101 info, it may be a "ha ha, listen to this ridiculous thing I did postictally! Epilepsy is serious, but I don't have to be" kind of thing.
b) Tweeting at least one fact-thing a day (I have way more non neurodiversity type followers than readers).
and
c) making 101-110 level fliers and handing them out. Everywhere. ESPECIALLY places where I interact with people.
But I need your, yes your, help! I'm at the point where I don't remember what's 101 info and what's eyeballs-glazing-over technical. Or what questions people have. So leave 'em in the comments! Please? Otherwise I'm going to end up with a month of BAAAAAAAAAAAAAAAWWWWWWWWWW PEOPLE ARE WEIRD ABOUT EPILEPSY! posts and really awful fliers. That'd be tragic, right?
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