Monday, August 31, 2009
So I got up early yesterday morning (7:30 A.M.) and Leigh rolled out of bed. Good thing I brought coffee. We hung around for a little bit, then as her roommates got back from church, we made omelets and tater tots for brunch in their new apartment. Several of their friends from a downstairs apartment also trickled in, and we fed them too. I hugged people I hadn't seen also summer. I talked about work. I talked about Disney World. I talked about other peoples' work. I talked about cats. Am I allowed to talk about cats? Oh well. It hit me as they started to leave how overwhelmed I was. No more talking, please. I needed to get out of there. We took a walk to upper campus and visited a friend of our in her dorm room. We got back, and that's when I dove under Leigh's lofted bed. It's the perfect height to sit under. I spread my sleeping bag and stretched out with my computer... I couldn't have felt safer, more shut off from the world while still able to see what was going on in the apartment. I never wanted to come out.
We made a wonderful dinner of tostados then hurried off to church. I love this Anglican church because it uses liturgy, which so appeals to the part of me that loves repetition and familiarity. Hearing the same words each time and being able to read them in the bulletin, rather than having to rely on my faulty auditory processing, is amazing. After church, we had a chat with the pastor about autism and Christianity (more on that later). We had to deal with talking to some people we didn't know, and I got pushed pretty close to the edge of what I could handle. I wanted to go back under the bed, but we had places to be and a friend to see!
We stopped at a friend's apartment. Fortunately, this friend is completely okay with me being me. I knew it was okay if I wasn't completely engaged, and I was so glad for that, because right then, I wasn't. They mostly talked and I jumped in when I could. I told Leigh when I really needed to leave, and we did.
I slept under the bed.
I feel like I've gotten out of practice. All summer, I've only had my mom. I came back here, and all the social demands were a little too much. Should I not hide under the bed? Should I push myself? Under the bed saved me from any total melt downs, but I almost lost it several times. It seems like when I get a break from having to push myself, I forget how to. Is that good or bad? I'm not sure.
Friday, August 28, 2009
Ah, there she is. Isn't she gorgeous?
If you haven't read Temple Grandin's books Animals In Translation, you should. In it, Temple does a great job explaining how she uses autism to better understand animal behavior. One of the things she describes is that one way to study the brain is by its three layers. The outer-most layer, the neo-cortex, is the layer in which the connections form that allow us to have complex social emotions and will. It's our "human" brain. The middle layer, the cortex, allow us to feel basic emotions such as fear, want, anger, and love. It is our "animal" brain. The inner-most layer, the brain stem, allows us to perform involuntary actions such as breathing and digestion, is the "reptilian" brain. According to this evolutionary brain theory, people with autism resort to their animal brains, in which we feel the more basic emotions, much more often than do most people.
I found this very interesting because it gave at least some amount of background to something I know very well- that I understand animals better than I do people. It goes back to when Leigh said, "Okay, I'll go try to speak cat. Now you go try to speak people!" Just a few weeks ago, we were at my aunt's house. She has three cats, and one of them is terrified of people to the point that it's never, ever been touched (it's a shelter cat, a former stray). Given its history, this isn't surprising. However, this wouldn't be the first time, by far, that I'd gotten a stray to come over and say hello. There were 6 or 8 people in the house, and the cats and I were both feeling the chaos. I talked to the scaredy-cat while everyone else talked to the people, and it took no more than five minutes before she was winding around my legs. I bent down to pet her, and she gave me kisses. I can't explain the connection, but I can't deny it.
Is it because our brains are truly on the same wavelength, firing the same neurological firings and causing the same emotions at the same times? I don't know. No matter the amount of stress I'm feeling, it decreases by 90% at the presence of a dog or cat. I'm trying to explain how that works, but... I can't. Maybe that's part of what's so wonderful about it, that it just works :)
Tuesday, August 25, 2009
I could go to work everyday.
I could make more money.
I could make my own way in this world.
If I didn't have autism, then I would do more.
I could sit outside on the Fourth of July and watch the fireworks.
I could go out with friends after a long day.
I could go to the mall with my family, and still be able to go out to eat.
If I didn't have autism, then I would live more.
I could travel to faraway places without fearing the disruption of routine.
I could visit friends without worrying about how to act normal for so long.
I could try exciting foods, go to concerts, and go to movies without overwhelming my senses.
But if I didn't have autism, I would miss all the joy in life.
No hiding under sunglasses and a white hat.
No more weighted blanket after a busy day.
No more cats. No more cats?!
It's not an easy choice. I don't think it ever will be.
Today, I'll keep autism.
Sunday, August 23, 2009
Guilt? Uncertainty? Oh no. Here we go with those words again. Um... IT has been taken (see this post). I'm going to be lame and going with IT2, if that's okay.
So here's how it goes. See, I graduated, Magna Cum Laude, from this great little conservative college, majored in elementary education. Nevermind that I did it falling apart at the seams for 4 years... the academics were beautiful. My classmates are now going on to start their first year in their own classrooms with their own students. Quite a few are engaged or already married. Then there's me. I'm working 16 hours a week in the photo lab at the local grocery store. I don't have a license because I was having seizures. On a daily basis, I only see my mom. I don't "go out" with anyone. Oh, wait, I don't even want to go out.
I'd love to say that this is just until next year, but no. You see, I didn't student teach. I was so, so far from being able to do that. My professors all saw it, but I didn't, and went ahead and... completely, totally fell apart within 2 weeks. Between sensory stuff and social stuff and organizational stuff, it was a nightmare. It was truly hell. I never want to do anything like that again. The problem is that it takes me so long to recover from being out in "the world" that I didn't even have time to get over being "out" before I had to leave again. That's why I'm only working 16 hours now. I need that much time to get myself back in order before I can leave the house again. It gives me about 3-4 hours, sometime during the week, to do one other thing. For example, I went to the mall and the grocery store with my mom today. The rest of my "out" time this week will be dedicated to working. All of it.
So I have this fantastic degree from this wonderful college, and I can't use it. I feel useless. Pointless. What good am I, developing pictures 16 hours a week? Heck, I don't even do that... sometimes, I go a week without any pictures brought in. My days are spent doing dishes, cleaning up, asking my mom what I can do around the house, doing my laundry, trying to remember to test my blood sugars and failing miserably, watching TV, trying to exercise in the midst of anti-seizure medication stupor, talking to Leigh, visiting Dee's dogs, and playing with the cat. Just staying on my parents' health insurance costs three times what I currently make (and no, my parents can't really afford that either), I don't work enough to help anyone out that much, and without a license I can't really volunteer anywhere. I'm... nothing.
Transition, Leigh says, this is all transition. Be patient. It's not going to happen all at once. I know she's right, but the IT2 of it all... the desperately wanting to be that which everyone else already is... sometimes, it gets the better of me. Everyone else is off to their jobs and relationships and apartments and... I can't even remember to get my medications refilled on time, after six years of working on that month after month. When will it be my turn? What if it's not autism and I'm just lazy? That's what scares me. Also, if I speak out, then everyone will know all the things that I can't do. I can't work full time, I can't live on my own, I can't support myself like "everyone else" can. Maybe if I want normalcy badly enough, if I work hard enough, I could have it.
I wish I could do some good for the world of autism... but I guess I'm just too chicken. Too confused. Too... IT3?
Saturday, August 22, 2009
I've read every book on autism available through my local public library. Then, I had the public library order the books available through all the other city libraries. At this point, I've read everything in my city. What I really want to read is books by other people with autim, like Temple Grandin's books, but when I ran out of those I start stretching...
So I turned to online. There are a few active online communities, but the only one that caters to people with autism is Wrongplanet, and I find it frustratingly negative and often very, very confusing. The people on there can be terrible toward one another. I stay away from that site, for the most people.
I'm wondering, are there are people out there like me? Do other people feel that need for community but just can't find it? I find that community with others when I read about them. Reading Temple Grandin's books, then, is right up my alley. Would that help someone else?
Should I write a book?
I have some (uh, massive) organizational problems, so I would not be able to set out from the start and write the book. I would need help with the structure. Leigh and I were talking a while back, and we think the best way to do that is to do question/answer style. If someone else writes the questions, I can answer them. Anyway, the other day, she wrote 30-some questions down for me.
Now that you've read my post, your task is 3-fold.
1. Leave a comment: what do you think?
2. What is one question about autism (autism and me specifically, or autism in general, or something very specific about autism... or "why do you do x"... up to you) that you have?
3. Tell someone you know to read this post so that they have to leave a question. I need questions from all kinds of people for my book!
Wednesday, August 19, 2009
I was hoping, hoping, hoping that I could be meltdown-free, as "non-autistic" as possible during these few days. That didn't last long. It never does.
Last night, a few really minor things set me off. By 7pm I was cranky. By 9, I had completely lost my words. I was so frustrated that I'd lost them, because it was too hard to focus for me to do much, so I felt like my fun was gone too. I was angry at whatever stole my words. Luckily, my kitty came by in a really friendly mood around midnight, and after telling her "Hi!" a few dozen times, I found a few more words too. Slowly, slowly, the words came back.
We're leaving this evening to stay in a hotel tonight with Leigh's parents, then tomorrow we're going to move her onto campus to the new apartment in the morning. Then, I work from 3-7. Hopefully, I can handle all of that. My words are back, but I'm still not having the best of days.
I guess autism doesn't budge, even for friends visiting and trips planned. But I wish it would!
Monday, August 17, 2009
So, here is how I do it. Go ahead, check it out. Check out Andrea's blog while you're at it!
Sunday, August 16, 2009
Wednesday, August 12, 2009
My mom and I were talking in the car tonight. I told her that I understood that she did not want me to have a dog, but that I didn't understand why she didn't. The why really shocked me. Actually, it really hurt me.
I don't deserve a dog. I'm not working full time, you see. I work 16-20 hours per week, right now, and it's really as much as I can handle before I start to shut down or whatever. I'd love to work more and make more money, obviously. Wouldn't anyone? But I can't. If I did, I'd start missing days, skipping appointments, canceling things at the last minute... no good. I'd start to fall apart. I'm pushing myself just to the edge of what I can handle without really screwing things up, as it stands now. Four hour shifts, four times a week. Obviously, living at home.
As long as I don't work full time and/or live in this house, my mom says that I don't deserve a dog. If I can't "get it together" enough to live like most adults do, then I can do what most adults do, things like having dogs. If I want my own dog like an adult, I have to live like an adult. If I can't work full time, then I absolutely have to get on SSI so that I can afford prescriptions, etc. I really, really don't spend extraneously, but my mom says that even if I do have extra money, it most certainly cannot be spent on any pets. That if I have to ask the government for money, I can't go using the money to have a pet, of all unnecessary things.
Call me heartless, but I could more easily live a humanless life than I could one without animals. Saying that I might face a petless future is... horrible. She did say that once I'm on my own, I can spend my money however I want, and that her approval won't matter. Still, I've never done anything without my mom's approval. She's even okay with my tattoo (any guesses as to where it is or what it says?)! I mean it when I say that I don't think I could live a day-to-day life without pets. And don't say "go visit someone else's..." because that's kind of like aw, I'm sorry you can't have kids... why don't you babysit someone else's kid? It's just not even close. For someone like me who is so very close to animals, saying that I don't deserve a dog because autism is limiting me is like saying that I don't deserve friends, or something else so basic. Animals and friends are almost equally important in my life. Guess which comes first?
Every time I think she's starting to get it, here we go again.
Tuesday, August 11, 2009
I don't know how to emphasize that so that it conveys the truth about how much I want a dog. Does everyone know how much dogs can help with therapy, especially for people with autism? Check out places like 4 Paws for Ability (http://www.4pawsforability.org/autismdogs.html), which train service dogs specifically for kiddos with autism.
I've thought about going the service dog route, but I think I can get what I need with a very well-behaved dog that I've brought up myself. I would train him very well and make sure he knew how to behave around kids, cats, other dogs, in crowded situations, in public, you name it. Even teaching and training dogs is a lot of fun for me. I could do that all day.
There is almost nothing better than cuddling with a good-sized dog down on the floor. I need a dog that I can really be physical with and play with. Leigh, who has grown up with German Shepherds her whole life, thinks that a small female German Shepherd would be perfect, since they're super smart dogs.
I'm trying with my entire being to be patient about this, but what if I just can't be? I try to tolerate people, but I love animals. I need a dog.
Saturday, August 8, 2009
Yes, I can still type, but it's much slower and harder. The grammar and the structure confuses me, and suddenly the pronouns are a lot less important. I tend to leave out the "I" in most of my sentences. In case you're wondering, I'm going back and putting it back in, for your reading ease, tonight.
Tonight, this isn't at all a problem. I can sit, read my book (Temple Grandin's Animals in Translation... more on that later), try to pay attention to TV, whatever. Sometimes, I lose my words when it's a little more important, like at a restaurant when I need to order food or at work or in class when I'm expected to speak. Somehow, I've always gotten around it. A lot of times, that involves simply making sure that I'm not with people when I can't talk to them. Oddly enough, I don't mind being out with my mom, or something, if I'm not talking, but I'm embarrassed to be around my peers when it happens. That's when I avoid everyone until I can get it together again.
It's happened as far back as I can remember. Earlier, I asked Amy (my older sister's childhood best friend who has known me since "before I knew me," since I was months old) if I did it as a young child... shut down, stopped talking for periods of time. She said that I did, but that at the time I seemed tired or cranky, but that looking back, kids don't normally do that. Anyway, good to know that it's something I've always done... somehow, I take comfort in that.
Anyway, that's enough blogging for the moment, but I'll leave you with this snippet of a conversation Leigh and I had that still makes me laugh. Background: I was in Disney, and my sister had just arrived. Within about 5 minutes, she and my mom were talking about things that I had no idea what was going on. I went into my room at the resort and called Leigh because I knew I'd cheer up. This was the end of the conversation.
Me: Hi to Joe! (Joe is Leigh's cat)
Leigh: Okay, but I don't speak cat like you do. I'll try.
Me: Okay. Yeah, try. Try to speak cat.
Leigh: You... go back and try to speak people.
Wednesday, August 5, 2009
He says, "Pooh, you idiot, I'M RIGHT HERE!" P.S., my new shirt!
Tigers zonked out in Animal Kingdom... hot sun.
Tigger, closely resembling his cousins in Animal Kingdom and his human friends at the end of the first day touring Magic Kingdom. We were all whooped.
Hi, ducks! There are lots of ducks at Disney. I say, "Hi, ducks!" every time. They quack. A lot. I laugh. They quack again.
Tigger and I both love how great an ice cold Diet Coke tastes after a few hours in this Florida sun!
Mom and I got this bag for Dee, who is taking care of my kitty while we're in Disney. The bag is made in Morocco, and we got it in the Moroccan part at Epcot. Isn't it pretty? Tigger was checking it out.
In Germany, at Epcot, there is a whole little town with a little train that runs through. Here's part of the little town.
Tigger got this sombrero at Epcot, in Mexico. He thinks it's pretty snazzy. Hehe.
Tigger has a baby sister! This is Seal. See, I've been looking for a little stuffed cat that looks like my real cat for ten years. Yes. Ten years. Every single time I've seen a stuffed animal shop of any sort, I've gone in and searched for a cat that looks remotely like my kitty. Finally, today, in China at Epcot, I found this adorable little kitty. This is by far the closest kitty I've seen to Elsie in stuffed animal form in the past ten years. So, I made an $8 investment. I'm thrilled.
Monday, August 3, 2009
Take today, for example. We got up a little later (8:30?), got ready a little slower, went to Hollywood Studios around 10, did just three rides, then had lunch were we'd made reservations. I got a little pixie dust, and they gave me free chocolate gelato for dessert... sooo good! Then, having done the big things we wanted to do at that park, we headed back to the resort for a big break. Around 5pm, we went to Epcot. We did a ride, had dinner, did two more rides, then realized that my sister had left my mom's wallet sitting somewhere and had to track that down. I wore earplugs for most of Epcot, which was a good thing because fireworks caught me totally off guard! We were far away though, and everyone had crowded near them, so it was really empty and my ears were plugged, leaving me pretty comfortable. It made for about six or so hours in the parks without moving very fast, but it was so much calmer!
We've had our share of Disney magic, too! Last night, we went to get a Diet Coke (I'm a full-blown addict), and I had to pay with a card because my mom, who was off watching a noisy parade, had my sister's money. The guy just let us take it. Then, today, the gelato. Of course, my GAC sure seems like a huge dose of magic, when I'm about to melt down and getting on a ride lets me avoid that! The feeling of rides is actually very, very calming. I love it. Unfortunately, I want to ride the same ride six times in a row, and no one else wants to do that. Why not?!
So, we are getting a system, and things are calming down. Even in the midst of my meltdowns, I was having a great time! I absolutely LOVE Disney, it's just a tough environment autism-wise, I guess, especially with people who aren't the most understanding. Tomorrow, we're going to sleep in and then hang out around the resort... there is a huge lazy river around this place somewhere that we want to check out.
Have I mentioned that I miss my kitty? Do I need to?
Sunday, August 2, 2009
We stayed out until dinnertime yesterday, crashed, then went out to eat later with my sister. My sister is being hardcore, "deal with it, grow up, no one likes the crowds, stop it." That's definitely complicating things at times. Today was good, because we did 3 hours of Animal Kingdom before I fell asleep laying my head down while my mom and my sister were doing stuff, came back and slept for 2 hours, then went back out to Magic Kingdom for the evening. We did Adventureland and Frontierland, basically. I ate gluten free pizza (yum!). We did have a major crowd issue with the parade again, and then even worse (I'm talking HUGE) with the fireworks. We got stuck in the fireworks, so I hid in a shop and tried to call Leigh. She didn't answer. My mom got me a chocolate-peanut butter rice krispie treat (gluten free!) which was actually pretty distracting. The ferry ride was really crowded too, though, so after a full 90 minutes of quite literally jam-packed people around me, I started to lose it and my mom told me to take Klonopin. At that point, it seemed like the end of the world to get it out of my bag, but one Klonopin (and a shower, a drink, and some personal space!) later, I'm doing okay.
It's so hard for anyone to get how I can be in the midst of everything I hate, like the noise level and the crowds, and love this place so much. But I really, really do! My meltdowns don't really bother me. I'm just so afraid that I'm going to ruin my family's vacation!
Saturday, August 1, 2009
First of all, I'll excuse today's kind of hellish undertone in that it was a travel day. Travel days are supposed to suck, right? I mean, okay... hold up. Rewind.
I love Disney World, and I'm in Disney World, so I AM happy. Very happy! But bad things happened. Is that okay? So, I am happy. Now here's what happened.
First, the traveling (walking through crowds of people, such as in airports, really stresses me out). Then, lots of waiting. I try so hard to be patient. I think I did pretty well with that. We got to Magic Kingdom (did I mention it POURED all day?). I got my Guest Assistance Card (more on that later). I was soooo excited to show my mom my very favorite place, and she was excited to see it! For all the times I've argued that I don't flap my hands, Leigh, I'm sorry-- I really do, don't I? Even my mom said, "Yes, I can see that you're excited, you're so flappy today." We rode a few (amazing!) rides, then we quite possibly the best dinner of my life. I'm not even kidding! Then, it started...
First, there was a parade that involved music being played over loudspeakers throughout the park and lots (and lots and lots and lots and lots) of moving lights. Well, I wanted to ride Space Mountain, and the parade was both bright and noisy, so please get me out of here. In order to get out of the way of the parade, though, we had to get through the throngs of people. It. Was. Torture. The crowd was absolutely jam-packed, probably 10 deep by 100 or so long, with a jam-packed crowd of two "lines" trying to pass each other behind it. No one was cooperating, so it was a lot of getting stuck. I was crying by then, trying to move through all those people. The only way through was out, though. We got out. I could breathe. Okay. Space Mountain.
Space Mountain was closed. Flexible. Flexible, flexible, flexible.
I can ride the Speedway (aka, go-karts) if I use my pass and don't have to stand in line with all the noise and completely freak out, right? If my mom drives, so I can hold my ears, right? I can do that. That would be fun.
Insert title of post here. You got it, people: and then, there were fireworks.
I lost it. I tried to put in my iPod, but it didn't block nearly enough noise. On go-karts, with fireworks? Oh my goodness. I was bawling, shaking, trying to hold my ears and bite my hands at the same time, while my mom was trying to help me and drive. It was awful. My mom loves fireworks, so she was also enjoying them. But, seriously, what a disaster.
At least, after that, I got a Mickey ice cream bar, which is only the best form of the best character of the best food in the whole entire world.
On another note... this Guest Assistance Card. This pass allows me to use an "alternate entrance" to the rides, so that I don't have to wait in noisy areas. Back in October, I got so run down by the waiting, that it was sometimes hard to enjoy the rides. Today, for example, I was pretty stressed out after parade issue... but because of my pass, I could stay in the park rather than have to go back to the room and give up for the day. Basically, it allows me to use up my crowd energy when I'm moving around in the parks throughout the day, rather than all at once on just a few rides. Still, what ends up happening, is that I'm being let on the "fast pass" entrances. Basically, at Disney, you can go to a ride and get a pass that tells you a specific time to come back, late rin the day. Then, you come back at that time (say, 4:15pm) and get almost right on the ride. Well, because of my GAC, I can hop right on almost any ride, any time. I feel very, very, very guilty about it. Someone said that it sounds perfectly fair, because otherwise, it wouldn't be anything like vacation for me... but somehow, I still feel bad not having to wait.
Anyway, tomorrow is Epcot. And, Lord willing, there will not be any fireworks!