>Under the bed

>I’m visiting Leigh at her new apartment on campus yesterday and today. Well, it was just supposed to be yesterday, but I really, really wanted to go to church last night and it was easier to stay the night.

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.

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>Why I love cats

>

I love cats. A lot. Oh words, you fail me. That doesn’t even begin to cover it. I really love cats.

You probably know that I have a cat… the one, the only Elsie Penelope.

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 🙂

>If I didn’t have autism

>If I didn’t have autism, then I would be more.
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.

>If I just want it bad enough

>If I could just get rid of this one irky thing, I think I could be a lot more outspoken about autism. Oh, you say that the role of 20-something, cat-loving, autistic spokesgirl for treating people with autism well in college, in the workplace, in life has yet to be filled around these parts? I could do that. I could. But there’s this… this thing.

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?

>I want to write a book

>Warning: I need your opinion.

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!

>Non-autistic?

>It’s so great to spend time with a friend I haven’t seen since May!

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!

>Guest blog!

>Being fairly new to this blogging world, I’ve never guest blogged before. But, when I saw a post on Andrea’s blog saying that she wanted parents to write about “How do you do it?” meaning parent a child with special needs, it sparked my interest. I’ve had some rude questions and comments out in public about my behavior, so I wanted to write about how I do it… how I live with autism, day-to-day. Sometimes, it’s so frustrating to deal with what is only a lack of knowledge on the part of those people. I can deal with it on a good day, but not when I’m out in public and trying to ward of a full blown melt down. That’s not the time to stop and explain what autism is all about.

So, here is how I do it. Go ahead, check it out. Check out Andrea’s blog while you’re at it!