This was worth reading.

Feeling significantly better than I was yesterday, but am regularly disappointed in myself for being so brittle, so easily broken. Insecurity and fear wait around every corner, and my appetite has plummeted. All I ever seem to see are signs that he doesn't love me anymore....and I know that's not true. He's grown understandly weary of reassuring me, but I can see clearly through his actions that he does still love/care deeply for me. After all, why else would anyone put up with this much upset and overall difficulty from me?

I miss my dog so much. :-( I honestly do not feel OK at all since he's been fostered elsewhere until I find a place.

Fuck it. I can't just sit here and let this kill me...and that's what it will do if I don't fight it.

Not feeling OK. I don't know why, whether it's a calendar/time related thing, or maybe it's that I don't have my dog anymore (he is being fostered by a good friend and I will be able to get him back, otherwise I'd probably be a real mess). It feels like my soul has been crushed into little fragments. My BF is back, and I am happy to see him again, but it's very hard not to be all clingy right now. I feel so fragile and sad. :-(

The thing of it is, most of the people who have those awful puzzle ribbons probably have the best intentions. They think they're doing something nice for people on the autism spectrum. They think most people with autism are kids (I guess that the perception is that we never grow up into adults?). They mean well, so they buy a sticker or a magnet or a T shirt.

But that isn't what we need.

What we do need is so much more involved that I can understand the urge to go for the hideous ribbon logos.

• We need for you to actually learn about us, from our perspective. This isn't selfish. We spend years in therapy learning to adapt to your world and to try to see things your way even when it makes no sense to us at all. We have to make major changes and pretend to be what we're not. Reading a few Temple Grandin books, watching the movie, isn't going to kill you or warp your mind.
• Quit forcing us to stare at your eyes and stop baring your teeth at us unless it's a genuine, from the heart smile. Bulging eyes and a red clown-like mouthful of teeth and a phony smile are pretty frightening, frankly. If we are comfortable with making eye contact with you or can cope with giving it a try, we will...but for most of us, we are better able to listen to you and focus on what you're saying if we don't have to deal with the discomfort (sometimes extreme) of full frontal eye contact for prolonged periods of time.
• Don't touch us without asking. Please. Please. Please. Also please be aware that many girls and women on the spectrum have been molested/raped because we had trouble reading social signs that would have signaled danger...and so unwanted/forced physical touch may be a trigger.
• Understand that a meltdown is not the same thing as a tantrum, it isn't drama or manipulation and it definitely isn't something that can be turned on or off like a light switch. Meltdowns are scary and awful, which is why we are reacting so badly..... If you were experiencing it, you would be freaking out, too. Just be glad you don't have meltdowns and if appropriate, get us to a safe, quiet place in a non-punitive way until the meltdown is over.
• When you see parents with autistic kids, don't say "I'm sorry" and act like the kid has a terminal illness! Would you gush sympathy like that if the kid had Down's Syndrome? Probably not. Probably you'd focus on the positive traits of Down's. Also, even if that kid is stimming like mad and not making eye contact, they can hear/understand that you are acting/talking as if he/she is a terrible curse on his/her parents. That does nothing good for our self esteem. Stop it. Also, may I point out here that an awful lot of these kids have a parent who is also on the spectrum, albeit high functioning and able to "pass" as normal? It hurts even more to be that parent and have people react that way! Autism isn't a death sentence!
• Also, assuming that savant skills are present is just as unhelpful. We aren't all math genuises with freaky skills. Just accept us for whatever it is that we are, and know that every one of us is unique, just like you ostensibly normal people are all unique.
• Don't judge parents of autistic kids. They're often sleep deprived and stressed out already. Their kids are even more stressed out. The kid doesn't just need to be hit/spanked more often in order to avoid meltdowns and if you think that's the solution then you're part of the problem, so just walk away.
• Wear less/no perfume. No Axe. Some of us have sensory issues such that we're hypersensitive to smells and can get a migraine or feel like throwing up when you douse yourself with perfume. I can tolerate mild scents, and enjoy some of them. Subtle is always better anyway!
• We aren't generally deaf. Talking loudly as if we are isn't helpful, especially if you're also staring us down. If it seems that an auditory processing problem is occurring, you can talk slowly and calmly and pause, also ask a question for feedback to make sure we understood what was said. Please don't get mad if we ask you to repeat yourself. We were trying to listen, but our brain sometimes needs extra processing time. This has nothing to do with intelligence, by the way, so you don't need to talk to us as though we're 5. Just slow down and be patient. The more extraneous stuff/sensory input there is, the more patience we will need.
• Following high-input situations, environments, or activities, we will need down time, to zone out and recover. This is true even when we were really enjoying the exciting activity or place we were in. Refusing to allow down time will result in meltdowns and meltdowns are awful experiences that require even more down time.
• If it isn't hurting anything, let us stim. Stimming is a coping mechanism for us. You people do weird stuff all the time; our weird stuff isn't any weirder, it is just different, and it is functional (coping).
• Please be gentle, kind and patient with us. If you don't understand, that's OK. Just give us our space and keep an open mind and heart. We aren't cold and heartless people and we can be hurt more easily than you might think.
• Boundaries need to be very clear, as we cannot intuit them with magical social skills. If we are doing something that is not OK, say so right away. Please try to keep boundaries rational, reasonable and respectful.

It's only the second day of April and already I feel like snarling over the autism awareness shit being spewed by people who are not autistic and who do not, in fact, advocate for us. Looks, it's like this:

Westboro Baptist Church is to gay people as Autism Speaks is to autistic people. They both claim that the world would be better off without a certain kind of person and that a "cure" is in order. And if that "cure" entails eugenics, so be it. If that church were trying to get donations to "help" gay folk, the outrage would be instantaneous, particularly if they claimed to be THE VOICE for gay people. Oh, sorry, I forgot. We're like cancer. For us, it's different. We're a disease that needs to be eradicated. Our parents want to kill us (YES, they SAY that!! They even say it on national television and are responded to with sympathy!)

I'm sorry, was that supposed to be inoffensive? Fail

The gay rights movement was not spearheaded by straight fundamentalist christians. The civil rights movement was not led by the Ku Klux Klan. And the autism advocacy/acceptance movement cannot be led by Autism Speaks or by people who adhere to that brand of hatred. Yes, hatred. Call it what it is. Don't sugar coat it with smarmy good intentions. Saying that the world has no place for us, that we need to be cured (cease to exist), and that we are a plague, that life is just so difficult with people like us in the world, etc is not kindness or advocacy, it is hatred.

And that fucking puzzle piece....Oh god.... That puzzle doesn't even look like anything! It is just stupid meaningless blobs of primary colors! What kind of puzzle piece doesn't go together with others to make a picture? Is that the idea, that we're useless and won't make sense no matter what, that even if the pieces were to fit together, we'd still be incomprensible? That is not advocacy, folks, and it isn't helpful imagery. Ugh!

Corina Becker: Communication Shutdown for Autism Awareness? No Thanks!

Corina Becker: Communication Shutdown for Autism Awareness? No Thanks!

It would be lovely to be able to discuss difficult topics without having a meltdown every time. To not live as if I have a hairtrigger, just waiting for the slightest thing to send me spiraling into a whirlpool of pain. To not have this headache, these gummed up eyes, this upset stomach and migraine-feeling neck pain. To not feel embarrassed and ashamed of myself for falling apart...again.

And sadly, it isn't the Asperger's. Maybe a little bit....the Asperger's certainly contributes by not being able to tell kidding from serious, etc. Mostly though, it's the PTSD, coming around the block to try to fuck up my life yet again, ruining another day that could have been perfectly good, leaving me feeling so fragile and frail and small and in need of comforting. I hate this. I really hate it. They say that EMDR will help and I sincerely hope that they're right. :-(

Anxious. Feeling insecure...ashamed of myself for feeling insecure....defensive. Stop, I tell my mind...stop. There's no reason to feel anxious. Stop, you'll ruin it by worrying about it being ruined, the ultimate irony. Leave that thought alone and just walk away from it already. Ugh....

And I think back...a couple of years back. Yeah. Look what letting anxiety run away with me did then. Lovely. Please, brain, stop. Stop tormenting me already.

Don't think there's ever a time when I don't want a hug, regardless of how asocial I'm feeling. :-/ Oh well.

Had a great day. Working with blueberry plants all day is centering and calming, lots of solitude and time to think. Counter-intuitively, getting that kind of quiet/solitary time tends to engender a desire for more of the same, rather than a need for social interaction. For me, social skills/ability to tolerate social interaction are like a muscle- I must use it or lose it, and it really doesn't take much time alone for me to want yet more alone time. By "alone time", I mean all alone, without people nearby. For example, sitting alone in the library would count towards social interaction that would halt atrophy of sociability even if I don't actually talk to anyone for the several hours I'm there, because there is still human energy around.

Human energy is draining. Feeling all those people around....it is emotionally and mentally "noisy". Oddly, large gatherings of Quakers are much less draining than the same number of other people would be. That human energy is still something I need a break from, but much less so than if they were a different group of people. Not sure why.

So. You see how I am, and my dad still thinks I should become a CNA. That just seems like such an incredibly bad idea to me! Taking care of the people I love and nursing them is one thing....doing it every day is another. Also, although I would likely love, nurture and care for patients under my care, the social interactions with co-workers would drive me nuts. Recipe for certain disaster....

Ah---> speaking of such things: mullein is good for relieving congestion and it grows all over the place (free, in other words). It doesn't have an exciting flavor, but isn't bad, either...mixing it with peppermint or other typical herbal tea blends for people with colds (rosehips, high in vitamin C, are another recommended addition) is the general course of action. How much? Oh, I don't know....a single leaf, or maybe a tablespoon per cup if it's dried and powdered.

I feel useless. Sometimes I wonder what it would have been like to grow up in a family in which art was valued, nurtured and encouraged. Or if I'd grown up in a farming family. There were advantages to being born to a medical family, but as a result, I've always been pushed towards medicine, a field which is highly interesting, but requires math skills and/or social skills in order to succeed. Meanwhile, my true passions- all of them- art, animals, plants....went untended, unappreciated. Any one of these areas could have been cultivated with much greater success than trying to develop an affinity for math in a person who just doesn't have it.

It isn't that I'm blaming anyone; I don't mean it that way. But I lack confidence and belief in myself, in the very areas where my strength lies, because these areas have always been overlooked an tossed aside as only being worthy of hobbies or pastimes. I know, intellectually, that I have value and talent, but that recognition never really sinks in to my core/self worth. :-(

Have to move, the place I'm living at has been foreclosed on. Now what? The bright side: I've found a place to garden.

Perception is everything.

I hope that someday, I'll be able to love without fear, without the specter of loss haunting me at every turn, to be able to relax and enjoy the moment, to feel safe. There have been fleeting bits of time like this, so I know it can happen...but oh, for it to last, to be solid rather than ephermal...

Yay! Blueberry farm picks me up again this week!

Exhausted for no good reason. Going to fix up the fire damaged house and stay there, as it looks as though it isn't going to get foreclosed on after all.

Feeling discouraged and disillusioned.

The Family Dinner Table

A few years back, someone I admired and respected said something to my children about family dinners, such that eating together around the table as a family was assumed to be the norm for us. I cringed and blushed inside, not having the courage to shoot down this ideal that I hadn't lived up to. The truth is that I almost never have family dinners sitting around the table...not because I'm lazy, but because I don't like family dinners.

I realize that our society has elevated the family dinner to an essential ritual, that it's considered a hallmark of a healthy and respectable family. Politicians talk about family meals....sitting around the table together is the wholesome and traditional standard. One never hears about a happy family eating in a less formal manner. Happy families sit down and chat happily while sharing their mealtime, period.

Except that family dinners aren't always happy. For some of us, there are literally years of bad memories involving dinnertime and tables. There are parents slapping their children upside the head from across that table, making cutting remarks about the amount of food eaten, playing control games with that nice dinner, or forcing their kids to eat stuff that makes them gag. There are fights and scenes and general nastiness, cold silence instead of the happy small talk, none of it anything anyone would ever want to reenact, all of it so aversive that the slightest bit of tension at someone else's family dinner mkae my anxiety levels soar, makes my stomach sink with dread and foreboding. No, I don't have sit down family meals. And I don't buy that the sort of family meals that haunt my memory are healthier than the much more free form meals that we have. Convention be damned....there is more than one way of doing things, including eating together.

Nope. Landlord changed mind. Perhaps this is just as well; I was feeling like the ultimate traitor for considering giving up my dog, who has been there for me 24/7. What now? It's getting warmer and fixing the fire damaged cabin is beginning to seem like a reasonably attractive option.....