>Realizing that my verbal repetition probably far surpasses that of most people’s upon entering their apartments/houses, I grabbed my camera today to record. I mean, it didn’t end when I stopped recording, but I didn’t want to kill your ears. In the interest of total honesty, it’s a half hour later and it’s still going on. The beauty of it is that the cat doesn’t care one bit. I’d guess that 99% or more of our conversations revolve around these same two or three phrases. And, as you can see, Elsie knows exactly what to expect and how to respond. That’s my girl!
>The hashtag is a… what do you call it?… that I’m (actively) on Twitter. @autisticspeaks. I can’t promise I’ll be interesting, though…
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 staff’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.
>It’s a joke, right? The autistic girl is speechless. I mean, I spend a lot of time speechless… like right now. Can’t even talk to the cat!
But today I got caught off guard, big time. Even staff 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.
Staff 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 staff or my good friend Heather… I don’t say much. Today, I quietly talked to staff 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, staff 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. Staff 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. Staff is my aide.
End of story.
Now why can’t I say that out loud?!
>I’m forever fussing that I wish that people would type with me (you can ask Leigh on this one).
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!
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.
>In any Top 10 Reasons Why Holidays Are Rough list, I guarantee you won’t see this.
“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…
>On second thought, check this out!
If Johnny Depp does it, it must be cool… right?
>I went to the opthalmologist for my biannual check-up on Tuesday. I asked about glasses that filter out the fluorescent lights, since they cause me so much grief, and he recommended lenses with a blue tint. I asked, “How blue?” and he said, “Just a little.” So, I went for it.
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.
>Check it out here.
It’s perfect! Andrew did a fantastic job and I am so thankful that he took the time to hear us!
>So, staff and I were doing our usual Monday afternoon at the shelter… and can I digress for a minute? I pet the nicestdog. She was a medium-sized black lab (mix?), 7 years old, named Cassie. She stood in my lap and put her head on my shoulder and just sat like that. She didn’t smell bad, she didn’t shed, and she didn’t bark or even whine. I hugged her and kissed her and pet her and could have stayed there forever. Mom and I will meet a potential trainer on Saturday morning, and I want to ask him if he has dogs like Cassie…
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 staff 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 staff 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.