Saturday, April 30, 2011
I have hardcore rituals that I go through, step by step, every time I sit down at the computer. The list of websites to check and updates to peruse is extensive (8? 9? sites), but tonight I will skip them all. Except one. Okay, two, because I did check email. I will come here and only here because what I have to tell you cannot be held back for one more day. It's that important. Your task is to spread the word on this one... tweet, Facebook, blogs, verbal, I don't care. I don't care if you share the post or just the sentiments behind it. Tell your boss, your neighbors, your educators, your local politicians, your hairdresser. I don't care. Just tell.
So here goes.
At least for me, disclosing to someone that I have autism requires a very basic amount of trust. I won't tell just anyone. Yeah, sometimes I say it when I shouldn't, and sometimes I don't say it when I should (remember a few posts back?). Come to think of it, I frequently get it backwards. But if I say it, then on some level, you have some credit with me.
People respond in a variety of ways, but frequently, they say this or something like it: "You don't look like you have autism." or "I never would have guessed." or "You must be very high functioning, then."
Now, I'm not going to bash anyone for doing this, because first of all, they usually mean it as a compliment. Secondly, it's just a lack of education on how it feels to receive such words.
To be frank, I went through 21 years of sheer hell before I got a diagnosis and subsequent medication, therapy, services, etc. Horrible meltdowns, a ridiculously overwhelmed sensory system, lots of self injurious behavior with the scars to prove it, suicidal thoughts and plans, tons of bullying, periods of random nonverbal times that no one understood... you get the point.
Then, even my "good" (read: not necessarily good in terms of happy but in terms of functioning level) days are hard won. I. Work. My. Butt. Off. to come across as "normal" as I can. I bite my tongue so hard it bleeds so that I don't have to wear headphones in church. I talk until I literally have to excuse myself to gag over the toilet so that I don't have to be nonverbal and stand out. I go into Target with Heather, because "normal" people do that and like it, and have a panic attack, sweating and shaking, but I put my hands in my pockets and put my hair up to hide it. All today, and today was a "good" day.
And yet today, someone (I won't say who it was, but believe me that if anyone should know better, it would be this person) told me that had they not seen my diagnosis in writing, they would never think that I have autism.
Can you say invalidating? What I've been and still go through because of this disorder... I don't know. I don't really have the words on this one.
Now, Debbie Downer as I might be at times, one thing I've learned and hold to is that I don't like to say "don't do this" without following it with a what you should do.
When someone tells they have autism (or, heck, anything!) and you're surprised, do not say "Really?" or "You don't look/seem like you do" or "I wouldn't have believed that!"; rather, say....
(Do I have your attention?)
Say, "What do I need to know about how it affects you?"
No pity (and if I seem like I'm asking for it because of my lists of what I deal with, just, no. I'm not.). No babying. No mollycoddling.
So, now you know, and now I turn you lose to tell anyone who will listen.
Friday, April 29, 2011
Thursday, April 28, 2011
So, lest you think that because I have stopped complaining about them that the panic attacks have ceased, let me put your mind at ease; they are alive and well. The tricked me into a false sense of security when they abated for a week or so... but now I've had... four, I think, in a week.
I went to the big W today to get goggles (because Karen's taking me swimming Saturday!). You know, the ugly mask kind? Yeah, because I can't handle ANY water in my face. Anyway, to get those, and I needed toothpaste. For anyone who cares to know, I still use the bubblegum kind, because the minty kind burns my mouth. Dentist said kid kind is fine, so I stick with that. Oh, and I needed more earplugs.
And I got in and out of Walmart in like 10 minutes (even found a post-Easter-clearance duck, for me, and frog, for my therapist), with no panic attack, and was very pleased with myself for my accomplishments. All that for $16? Yes, very happy. A duck :)
Came back home and had a walk down to the thrift shop to poke around, then on a whim walked a bit farther (still no street crossing, as I don't manage that well and I live on a highway) to the 7-Eleven and got a Diet Mountain Dew (for the record, the flavor of the scent of the store seeps into the soda and yes, I can taste where my Diet Mountain Dews are from, and this one tasted decidedly 7-Eleveny. Not good. Have you ever heard of such a thing?!).. then walked back up the hill.
And now that I've digressed like six times, well, after that, I headed to Heather's to babysit her boys for a few hours so she could go to a meeting at church. Have I mentioned that I love those boys? Because I really do.
Got to Heather's an hour early for the sake of being piled on by her two cats in the nicely cool, finished basement. Boys in front of TV (hey, they're sick) and Heather headed out. All was well.
Aaaaand, cue the panic attack. I mean, seriously? It's Heather's. I couldn't be more comfortable anywhere (except maybe my own house) than Heather's. Her house is even better than my parents' house, because there are cats! And I started to get the telltale hot flash. Then the sweating. Then the shaking. Then the dizzy... ugh.
So what did I do? What I usually do when something's wrong and I'm at Heather's. I left A (5) in front of the TV and took D (2) downstairs with me to do kitties. He was less than thrilled, but he's cooperative so it was alright.
Well on my way to calming down, I brought D back upstairs. And maybe that's when it happened, in the two minutes we were downstairs. Or maybe it was when I went to cut up strawberries for D. Or maybe it was when I grabbed two bites (literally) to eat myself. I'm not sure, is the point.
A took D's BRIGHT BLUE blueberry juice, and I guess he shook the cup. When I came back in I saw D doing it and told him to stop and had him clean it up. At some point, I saw the spots on the floor... as in, big spots. More than a foot in diameter. On a cream-colored carpet. And remember, I was still kind of halfway panicked.
So I emailed Heather and found the rags and the carpet cleaner. I had A do the smaller spot while I did the larger one. Wondering, what the heck am I going to do with him until Heather gets home?, and not being at all one to raise my voice or scare children... I had an idea.
"A, I will not yell at you, so stop hiding from me. You will go upstairs. You will put on your PJs. You will brush your teeth, and you will get into bed and wait there for your mom to get home. D will stay down here and continue to watch TV (A's favorite thing in the WORLD) while you lay in bed."
Oh, I got him. He cried. He screamed. He begged.
I shook. I sweated. I was dizzy. I was so, so, so overheated. My head got fuzzy...
And Heather came home. I flew downstairs to lay with the kitties to calm down (only after explaining my state, and A's, to Heather) and I guess she had A come down for a snack. Don't know if she yelled, or punished, or figured he'd been punished enough, or what.
But me? I'm pretty impressed with myself. I think I handled the situation really well (I've never punished a child!). I also think I handled my panic attack well.
Oh no. They won't stop me!
And A? He's over it. Told me goodnight and thanked me for coming.
Wednesday, April 27, 2011
But today I got caught off guard, big time. Even Laura (CI... aka, aide) was caught off guard, and it's sorta her job to know what to say in social situations, right? But, oh yeah. Caught. That was us.
Laura and I go to a (huge, 100-women-strong) Bible study every Wednesday morning for a couple of hours. First, there is large group time, where we talk then sing then talk then pray then talk. And, aside from a few words with Laura or my good friend Heather... I don't say much. Today, I quietly talked to Laura until she got up to go to the bathroom, then I kinda sat there and went into the infamous Lydia Land (maybe I was stimming a bit, too?) while the ladies at my table gushed about... something. As I got up to leave when the lights blinked (and let me tell you: no one EVER gets up to leave on time!), one of the ladies apologized for, well... kinda ignoring me. Not that she needed to- I need to learn (uh, right, somehow) to jump into conversations (how? when I can't even follow them?)... but yeah, I wasn't remotely upset with them. I was happy to zone out, really.
So anyway, Laura came back and we headed to the room where our study (about 10-15 women) takes place. We were, of course, the first ones there, with the exception of one other lady who apparently had been waiting there for a while. So she chatted with us. I don't remember much... I don't think I chatted back... but I do remember that the woman leading the group gave me a sticker for being on time, and I was happy.
Then, half-listening and thinking about my sticker, I hear the lady (the only other one who was in the room) ask, "So how do you two know each other?"
Come on. We'd practiced this. We'd rehearsed. We knew what to say.
So what did we do?
I looked at the floor. Laura looked at the ceiling. Neither one of us said a word.
The woman said, "So... you just met?"
I think that's when other people started to filter in.
Now, if you know me at all, you know how I feel about lying. And in my world, misleading = lying. So, knowing full well that she had most likely entirely forgotten the awkward exchange...
I emailed her, acknowledged that I knew it was no big deal to her, but that I felt uncomfortable in that I had mislead her... and here was the (very brief) truth: I have autism. Laura is my aide.
End of story.
Now why can't I say that out loud?!
Tuesday, April 26, 2011
During one such fuss today, I got an idea.
How many people on the spectrum must there be that feel like me?
How many parents must there be that wish they had a real-time outlet?
So I created a chat room! It's here: www.tinychat.com/autisticspeaks. Come drop in and say hello and see if anyone's around!
Sunday, April 24, 2011
First I thought he was kind of ugly. Then I didn't know what to think. But now that I've been lugging him around with me for a day or so... well, I think he's hysterical. Hilarious. I mean, whose idea was that? "Let's make a bunny, a cute little bunny, with a ridiculously large tail."
So, he is Funny Bunny. And I giggle every time I look at him.
But hey, that tail? It's a good handle!
Not to mention, if I poke him at Elsie, she tries to eat his face... which is also rather funny to watch.
Friday, April 22, 2011
"Because I... don't get it."
Now don't get me wrong; I can tell you the definition of "maundy" and even the Latin word from which it comes, and I know the stories of Good Friday and Easter...
But something's missing.
Good Friday is the day that we remember that Jesus died on the cross for our sins, right? But first of all, it seems a little random to me, because we don't actually know what day Jesus died. Then, even if we did, we don't remember exactly every year but rather every sort-of year. And then, a year, well, that's kind of a human creation that designates a periodic passing of time, you know? It's not an objective, imposed-upon-us, kind of thing... a year on our calendar is 365 days, but on other calendars it was other amounts of days which had other numbers of hours in them... so really, it's kind of random.
And then, just because I remember doesn't necessarily evoke any certain emotion in me. I remember that my grandma died. I remember that my Jesus died. I remember that I went to Disney World. But there is no emotion connected with any of those. They just... are.
But right here and now? Now there's some happy! I have a cat! I got sparkly shoes today! I went to the movies! I didn't have a panic attack at church (though I think I sat and prayed for a total of maybe, maybe two minutes)! New staff person was good and "loves" my cat and thinks she's "beautiful" (her words)! Tomorrow I will meet a service dog trainer and interrogate him... I mean, ask him questions... about his program and his dogs! And Easter Sunday? More happy, because I get to spend an extra whole day with Mom! Not just Saturday, but Sunday too?! Too good to be true. So, I know Easter is for remembering the Resurrection... but really, I'm more focused on seeing Mom.
I feel like this doesn't quite make me the best Christian. In the past a friend has told me that God would understand that my limitations because this is the way He created me... but I don't want Him to need to cut me a break. I want to just do what I should do, like everybody else.
But... I have a sleepy cat and sparkly shoes...
Wednesday, April 20, 2011
Tuesday, April 19, 2011
You call this "a litte" blue? A little? They are practically neon.
I'm afraid to stand out like a sore thumb. But we bought them, and, well, I think I'm stuck with them. I'm considering wearing my old glasses most of the time (in which I see about 20/75... and yes, I drive in those) and just putting these on when I really need them. I feel bad because we picked out the frames and Mom paid the extra and everything, and I thought they would be good.
I know what you're thinking. It's the same thing my mom would say if I told her how I feel. "Who cares what other people think? You have to be comfortable."
I'm sorry to say that I, for one, care very much. I like to fit in. I don't fit in enough because of who I am... the last thing I need is neon blue glasses to make me stand out even more.
Monday, April 18, 2011
Anyway. We were getting ready to leave the shelter, and my cell phone rang with a weird number. That happens about once a week, and it always says some pre-recorded message about "my credit card," which doesn't even exist. I almost, almost didn't answer. And then I did.
"Hi, Lydia, this is Andrew H. from American Public Media in St. Paul? I read your responses to our questions online about autism and employment and I wanted to talk to you some more... do you have some time?"
Somewhere in there my phone died and I relocated Laura and I to outside where there is service, and he called back. We talked about talents and weaknesses and barriers to employment and past jobs and bosses and all that jazz. When asked about weaknesses, I said something about communication, and he said, "But you sound so very articulate."
I laughed and asked Laura to remind me what it was I'd tried to ask my mom earlier when she cut me off and said, "Lydia... I have no idea what you're saying." So, I told him about that.
Then, conversation with Andrew over (I'll send you the link to the story he does whenever it's finished, k?) I got home and tried to relay the story about the interview to my sister. It was kind of funny, because once again, she was confused and I couldn't straighten it out.
See, the thing is that I make perfect sense to myself when I explain things. I guess I lack the theory of mind to figure out what exactly the listener does and doesn't know without me saying it. As I try to think that through now, I'm boggled by it.
I guess my autism could be described by awesome gifts coupled with surprising deficits. A lot of theory of mind-type things I can understand in theory (i.e., you and I can have opposite thoughts about the same subject), but in practice, I don't do so well with it.
Andrew did ask me to describe "where I am" on the spectrum... and I said well, kind of everywhere... I like to say usually-high-functioning-autism.
Here; that's where I am. I'm here.
Saturday, April 16, 2011
If you asked other people in "real life" what they think of when they think of me, they might say cats, and... oh, I'm getting stuck already!... Diet Mountain Dew, and purple, and Disney, and Elsie, and candid honesty, and autism... okay, I think that's enough to make my point. This is racking my brain!
My point is, though, that people will probably never say anything like "assertive." Or "stands up for herself." Yeah, not much of that goes on here.
I've been called the r-word and I know people who have intellectual disabilities, and the few times I've heard the r-word said in public, I couldn't get my words together fast enough to defend them, me, us, anyone. I'm pretty ashamed to admit that, but it's the truth. And if I can't stand up for others, imagine trying to stand up for myself. It's even worse.
But I've decided something. I've figured out the words, so that won't be an issue, and this is what I'm going to say...
The next time someone either asks, "But don't you want to/think you should lose weight?" (and we're talking not doctors here. My, uh... former... BSS is the most recent example.), I'm going to say: "Actually, I'm beautiful and perfect just the way I am. My nutritionist and doctors say that I'm healthy. If people disagree, I guess it's going to be their problem, because I'm happy. But thanks for your concern."
Thursday, April 14, 2011
But in the meantime, check out this site (fixed the link, I think) about 50 blogs you should bookmark during Autism Awareness Month. Scroll down, oh, halfway?
And here come the words, now. You see, my goal is to be heard and to make a difference. It almost sounds silly, doesn't it? An autistic girl who doesn't work, can hardly volunteer, and can't leave the house without help... wants to make a difference? Why, yes, I do.
I want to have a voice, if only behind my computer. When I was in partial, we did a thing on self esteem, and we read a piece that said things like, "I have a body, but I am not my body. I have a mind, but I am not my mind. I have thoughts, but I am not my thoughts." I left wondering... well then what am I? But I just found the answer to that question. I am my words. My words are me.
Monday, April 11, 2011
So, how do you treat a person with autism?
Respect our differences! Please, quit trying to strip us of every little thing that makes us autistic. Who cares if I stim when I'm alone in my apartment? Heck, who cares if I do it sometimes in public? It's part of who I am; leave it alone. Maybe, instead of getting rid of the stimming, you can look at why I'm stimming and try to change whatever is making me uncomfortable.
Do NOT talk down to us. In my research study, all of the researchers talk to us like we're children. Now, I'll give you that in many ways, I am a child... but they speak to us in a way that I don't even talk to my friend's 2-year-old. I am a highly intelligent human being... I would venture to say that most of us in the study are more intelligent than the researchers themselves... please, treat me like the intelligent person that I am.
Involve us in decisions about us. Whether it's a behavior plan or a living situation or a huge, nationwide organization that seeks a cure for autism, we deserve to be involved in these decisions.
Respect our limitations. It's immensely frustrating to be told that I'm making it up or to get over it when I can't do something.
Back to the cure issue... first of all, don't assume that it's either good or bad. Some people want a cure and some do not. However, the way to go about finding a cure is certainly not to research prenatal testing. Why? Well, if a parent finds out that her baby-t0-be will have autism... how many will abort? Right. Not the way to do it. This world needs people with autism.
Saturday, April 9, 2011
I went from having no one to train my service dog to having OPTIONS! And all right near home!
I went from having nowhere to get my puppy to finding an awesome German Shepherd breeder just 2 1/2 hours away who even provided references for people who have service dogs from her!
I realized (after what, 8 or 9 months of it happening) why Elsie wakes me up at random times for seemingly no reason. Ready for this? I think she knows when my blood sugar is out of whack. Seriously. It clicked when she woke me up last night and I was 332... then I realized that when she wakes me up, I usually realize I'm high or low. How cool is my cat?!
I watched this video. Go watch it. I mean it. Be prepared for tears... I almost cried, and I NEVER cry at things like this.
Mini Addy came. You see, at 23 years old (plus the fact that I'm super sensitive to how people perceive me), I can't carry my big dolls around with me. So, I wanted one of the 6.5" dolls. Not able to afford the $22 plus $5 shipping, I posted on my message board (for adult collectors of American Girl dolls) and asked if anyone could send me a mini, any mini (though I dreamed of Addy) for $20 shipped. When no one responded after a while, I found mini Nellie online for $18 shipped and settled. But then, someone got back to me and offered me her Addy for just $5. Well, of course I couldn't say no because how often does something like that happen? So Addy came, and she's perfect and adorable and I love her. We hung out all day :)
I got a sock-cat kit. She's a sock monkey, only she's a cat! Mom said I could get something to sew at the fabric store, but rather than more doll clothes right now, I felt like this cat. And we had a coupon, so I got her for $6!
Mom said the government didn't shut down, which is exciting, because a lot of people's livelihood comes from government money. Namely, our soldiers deserve to be paid! I don't get much into politics because it upsets me, but honestly, it doesn't take a genius to figure out that our soldiers deserve to be paid. These men and women are fighting on the front lines risking their lives... and simultaneously worrying that they could lose their homes or that their families could go hungry or their autistic children will lose services? No. Just, no. I almost HOPE my SSI gets postponed, because I would feel bad getting awarded my SSI money when soldiers' families are doing without.
I spent the whole day out with Mom (like, 6 places or something like that, including church) and I'm not done! I feel okay!
I think Michelle (www.fullsoulahead.com) calls this a rampage of apprecation... I think I've got that right. Well, anyway, that's mine for today!
Friday, April 8, 2011
To update you on the email to the woman in charge of the conference, basically, she felt badly and had no idea how it came across. She said of course I can bring someone with me at no charge (though I'd told her that at this point, I don't think anyone can come). In light of that, she offered a volunteer to sit with me for the day. Other years, that might have been okay, but not this year. Not now. I'm too... something... to be able to sit with a stranger for that long. Or any bit of time.
In other news my frustration tolerance is nil. In the time I've been writing this, my computer has deleted everything I've written twice, made my font bold twice, brought up a new page, and I forget what else. I can't do anything on here, on my lovely new computer, without things going nuts. There is no virus; it has done this since day 1 and gotten increasingly worse. I scream, and pound on my desk, and bite, and everything else, because I can't handle it.
Also, did you know that the ONE place that will train a service dog for an adult with autism is 800 miles away and wants $15,000? Yeah, I don't have that. There are plenty of places that will do it at no cost to you, only they only train for children. There are places that say online that they do autism, and when you call, they don't. At this point, I'm planning to apply for a social support dog. He/she wouldn't be able to go out with me, which is kind of half the purpose of the dog, but would be able to be a well-trained dog at home with me.
My BSS is due to come at noon. She's loud. And she asks me very personal questions that I'm not comfortable answering, especially when I've only met her once. I guess it's her job, but she seems to have no sense that they make me uncomfortable. She wants to come to activities with Laura and I, but honestly... I make a HUGE effort to blend in as well as I can. Huge. Having a CI with me (granted, one who works really hard to blend in too) makes me stand out more. Having a CI and a BSS who stands there with a clipboard? No thank you. I'm not comfortable. It's going to be an interesting meeting with her when I'm currently unable to speak.
Anyway, sorry for the meandering and disorganized nature of this post, but that's me right now.
Wednesday, April 6, 2011
I am blessed to live in a city that is on the cutting edge of autism research in a state that provides awesome services for adults (no housing help, but that aside, I have it good). I mean, there are definitely still issues on all fronts, but people in my area are really trying, and I appreciate that. We're on our way, if nothing else.
So, next week in my city there is a big (in terms of big deal, not sure how large of a turnout there will be) conference about "Autism Through the Lifespan." There will be speakers and workshops and the like. And the coolest part? They so want people on the spectrum to attend that we are admitted free of charge!
Great! Right? Well... Yes, I may be free of charge... but my autism is such that I require either my mom or my CI to be with me if I am to sit through and thus getting anything from this conference. I mean, I can't even get through my hour and a half long bible study without a break or two. So, in order for me to bring Laura, it would be a $95 admission. I can't ask Laura to pay that. Her company has no allowance for working with me. I certainly can't afford that, and even if I could, it's against company policy for me to pay for her.
So, you see, I really can't go to the conference.
The message they are sending is that they want people on the spectrum to attend... but only the most independent among us. How is that supposed to make me feel?
I said I wouldn't write the person in charge an email. For over a week I held out. And then I fussed in my group today (at the study I'm in that I complain about all the time), and someone said, "But you know, there may be others in your position too." And that did me in. I came home and wrote to the president of the organization that hosts the conference.
Because really, how far is it? It's not. I matter too. We all do.... not just those of us that give autism a good name, but all of us, on all kinds of days, at all levels of independence. And an organization specifically for people on the spectrum should be the first in line to promote that idea. I'll update you on if and how she replies...
Editor's note: Thanks to Adelaide (see comments) I think I found my way around whatever setting got screwy! THANK YOU!