>68 minutes

>Lest you think my brain handles language just like yours does because I write just like you might, let me explain the difference. My brain handles language much more slowly than yours. These posts are written a phrase or a sentence at a time, almost never all in one go. For this post, I’m going to insert a * every time I take a break. So far, I’ve taken two.*

Normally, when I speak, I do okay if I keep it short. I’m not one to speak in long soliloquies.* When people see me write, they assume that I’m an intelligent being.* When I speak, my IQ drops about 50 points. People who have only heard me speak, and not write, ask me questions like “You can drive? A car?” and “You went to college?” These questions are not one-timers*, either. They’ve each happened at least a dozen times.*

But tired and anxious is a deadly combination, and I become both at work.* The echolalia, a.k.a. the repeat game, really kicks up then.* It. drives. me. nuts.*

One of the things I do is repeat the tail end of questions people ask me.* “Can you take out the trash?” is met with “Take out the trash? Can I… um… yeah.”*

(Pause. Insert melt down here).

Another* thing I do is get hooked on random phrases I’ve heard and* have this incredible urge to spit them out at random. “Sometimes I play the repeat game.” “Right on red.”* “God, You reign.”* Not a big deal when I’m alone in the laundry room at work (favorite activity there = put the radio on and repeat, repeat, repeat), but after work when everyone is sitting around and it’s all I can do not to say “right on red,” it’s a little– okay, a lot– weird.*

I also repeat my own thoughts, after I’ve thought them, out loud, over and over.* There’s a word for this… palilalia, I think. It fogs up my brain of new thoughts, though, and gets really aggravating.*

I wish I could sum this up nicely and wittily, but my brain is done.*

It’s rare that I run out of words to type with, but… as my mom would say, stranger things have happened.


>Problems and solutions

>Problem: Leigh was just down here for the weekend a month ago, and I couldn’t go up there because I had a therapy appointment Friday, a different therapy appointment Saturday, and a cat training at work on Sunday. I couldn’t go anywhere long enough for it to be worth it. I was melting down because my plans to go visit her for the weekend got broken and now I wouldn’t get to see her.

Solution: Leigh and I met for the afternoon in the town where my therapy appointment was. We went to Target (new belt, cat change purse!, and split a wedding shower gift for a friend with Leigh), the Christian bookstore (more on that later), Kohl’s, Lane Bryant, and Chik-Fil-A. We had lots of fun! Didn’t avoid the melt down, but I had fun once I got there and did really well being out for so long.

Problem: I need a devotional. I’m trying to do My Utmost for His Highest but I get very little out of it. In fact, I understand almost nothing. What’s the point of a devotional you can’t understand? I like to read my bible every morning, and every evening I want to have a little snippet to read and meditate on while I listen to my purring CD.

Solution: When we went shopping the other day, and one of the things I found was this book. It’s designed for kids. But it’s not all Sally-and-Susie-are-having-a-fight-and-oh-what-shall-they-do. It’s a bible verse, a short lesson with some simple examples, and a closing prayer. It’s not at all dumbed-down and doesn’t treat kids like idiots. I like it a lot, and I’ve started using it. I’m thrilled with my finding.

Problem: I’m terrified of the day when I lose Elsie. When I lose her, I’ll be without a cat period and may not find the right cat very fast.

Solution: Well, it’s not really a solution, but I want to get a second cat so that the transition is easier. I’ll just have two cats for a little while, and then one, instead of one cat and then no cat. It’s the no cat part that scares me so much. There’s a cat right now at work who is definitely the right cat. His name is Baby Corn, and he has cerebral hypoplasia… it means that his brain stem didn’t develop so his back legs don’t work, he can’t see very well, and he’s mentally retarded. He loooves to be held and cuddled and he’s the sweetest cat. If he’s still there when I move out (can you say a prayer that he is?), he will be my kitty. He told me today that he’d like that.

>And you wonder why I love the mail

>1. I got a letter from Temple Grandin. A real letter. It basically says that she had social problems too, that she talks about it in her books that I can read if I want, and it says to get a good mentor in my field and make sure they know to tell me when I’m being rude so I learn. I like that advice. I wish there were someone at work who could do that for me, but there isn’t. There’s no one I really click with.

2. I got a notice that an apartment is coming available in the very near future in the low-income housing. Elsie and Lydia: A New Adventure!

>No rest for the weary

>*I apologize to Leigh, to whom this post will look very familiar due to a conversation we had last night. Oftentimes, ideas for posts come from conversations I have.

My 4-can-a-day Diet Mt. Dew habit drives me nuts. I try to quit, and have sucessfully done so, several times, but it never lasts. First it’s just one drink when I’m out. Then it’s just one drink in the morning. Then… you get the idea. It snowballs.

There are two reasons I hate this habit of mine. The first is that I don’t like to be dependent on something. Now, that might sound funny, coming from someone who depends on cats and her mom and 900 other things just to get through a day. But the idea of being dependent on something chemical just… bothers me. Why eat organic yogurt and granola everyday when you’re putting all that crap into your body? I shudder to think of it.

The other reason I hate it is that it requires stopping at the grocery store. Lest you think I’m lazy, it has nothing to do with that. The grocery store is the biggest sensory bombardment there is.

Have you ever thought about everything that goes into a quick run-in for some Diet Mt. Dew?

– get ready to leave the house
Do you have your keys? Your wallet? All those important things that you need and often forget.

– drive to the grocery store
Did I mention that I despise driving and frequently do things like pull right out in front of people, don’t take my turn at an intersection, or get beeped at? I drive like a brand new driver, terribly uncomfortable and unsteady.

– park the car

walk into the grocery store
Dodging cars in the parking lot is a huge problem for me. I get beeped at and almost hit far more often than I’d like.

– find the soda aisle
I’m so overwhelmed by the grocery store that I can never remember where it is. Not to mention that, barraged by the lights and sounds and smells and motion and people, I sometimes wander. Then, I have to find myself, figure out where I’ve gotten to, and find my way to where I want to be.

– get the soda to the register

– pay
I always use the self-checkouts, because then I don’t have to interact with the cashiers. But I can never figure out how they work and get frustrated. Plus, they beep and talk, and they’re all beeping and talking at the same time, and it’s more than my ears can handle. It makes it really hard to do the paying process.

get the soda to the car
I have a horrible (like, really horrible) time finding my car when I leave a store. No matter how hard I try to remember, my sense of direction is so bad that I can’t reverse how I got to the store and go to the car from the store. I sometimes wander for quite a while before I find it again.

– drive home

As you can see, a quick trip to the grocery store takes a lot of work. I’m worn out by the time I get home. But it’s a rare day that I can just go to the grocery store then come home and take a nap. I have to go to therapies or work or make other stops. Today, I have to run to the grocery store and go to a counseling appointment.

Deep breath.

I think I can, I think I can, I think I can.

>Mental age vs. chronological age

>At 22, the world views me as an adult.. I can drive a car (usually), I can vote, and I could even drink if I wanted to (meh, no thanks). People frequently remind me of this fact… my stepdad and my case manager are the most notable examples.

But let me tell you a not-so-secret secret. There’s very little about me that’s adult.

My interests are those of probably a 4th grader. I love VeggieTales the same way that I loved them when I met them at 10 years old. I started reading Little House on the Prairie when I was about 8, and just last year I asked for the full set for Christmas. I was Laura Ingalls for a school event in 5th grade and junior year of college. Also in college, I would go to the Curriculum Library (for education majors) and read the books there. Now, I go to the local library and go to the juvenile section. Even the teenage fiction books are too much for me… I can read academic papers and understand, but I can’t follow the plot of a teenage or adult fiction book. I’ve tried to convince myself many times that I care about boys, but the fact is that I don’t. I’d much rather have my cat.

I’m also very attached to my mother the way a child would be. I depend on her, even though she’s tried to raise us to be independent. I’m afraid to go places without her. I’m okay staying in the house by myself, but I’m happier when my mom is home.

At work, there’s a girl who comes in to do community service for her school. She’s 15 but acts much younger. To be truthful, so far, she’s the only person I can really talk to at work. The other adults just… they’re adults. I don’t have anything to talk to them about.

I’ve been thinking about the women’s bible study I went to at my church, and I think this is the problem. Mentally, I’m much younger than they are. Their interests are husbands and jobs, and mine are children’s books, Alton Brown, and my cat. There’s a “ministry to the disabled” at my church, and I emailed the woman in charge. She said that the people range in ability and functioning levels from able to drive and hold down a job to unable to communicate. I wonder if I would be more comfortable at this ministry. I feel like it’s labeling myself as disabled, which I don’t really want to do, but at the same time, I want a place and people at church that feels like home.

I wasn’t always so behind in terms of mental age as I am now. The gap has grown as I’ve gotten older, if that makes sense.

Some days I think about trying to play catch up. But you know, I don’t think I’d be happy if I did that. I like what I like. If those things happen to be things that people younger than me typically like, then so be it. It would be nice if I could find one adult interest to talk to other adults about… maybe Alton Brown counts?

I just wish there were something that told people who meet me that I’m not a “real” adult. People ask me questions that I can’t answer all the time. They expect me to know things. I guess that’s the thing about autism… it’s on the inside, not the outisde.

>Anxious Good Friday


*Note: I’ve fixed the formatting of this post 5 times, and it won’t cooperate. I apologize for the obnoxiousness of the readability, but it’s the best I can do.
Because He lives, I can face tomorrow.
Because He lives, all fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
There was a Good Friday service at church Friday night, and I was determined to go. I knew my mom wouldn’t go after a long week at work, but I was hoping that my mentor would be there or the mother of a girl who has “autistic-like symptoms” that we know would go. Turns out, no such luck. If I was going to go to church, I was going to have to go myself.
I have a really hard time with large groups of people. Even at church, people moving around before the service and then the singing can be overwhelming. I like to sit in the back where I can’t anyone behind me. I feel safer, and my ears are calmer. Church should be quiet and enjoyable, but for me, it’s anxiety-causing. I go because I believe that, as a Christian, I should worship my God… but to be completely honest, I’ve never really enjoyed church. I do better with a fidget toy and a safe person, but even with those in place I’m usually pretty uncomfortable.
So on Friday, because we were remembering Jesus’ death, I felt the need to attend the service, anxious and alone or not. I went and found my spot in the back corner, but soon a guy came around with ropes to mark off the back ten or so rows. I had to move up. I was upset because those rows weren’t used for anything, they were just pushing the people up toward the front. I moved up behind an older lady and resumed texting Leigh.
I kept telling Leigh that I didn’t want anyone to talk to me. I was anxious, and I didn’t want to have to talk. At all. To anyone. Get the point?
Sure enough, halfway through the (almost 2-hour-long) service, the older lady in front of me turned around and said, “I love your pin.” I said, “Thanks. It’s for Autism Awareness Day.” She said, “I’m a retired nurse. I’m familiar with autism.” I told her that I had autism, and that I’d love if she’d take my pin. She did and put it on and thanked me.
Throughout the service, Ruby would turn around and talk to me. I was surprised that it actually made me more comfortable to talk to someone. That was a new experience.
Even so, I was terribly nervous, and throughout the service I continued to text Leigh on and off. Things got a little easier when she sent me a picture of a black-and-white cat. I figured I had two options: stay and text and look rude, or leave the service. I opted to try to stay and text. By the time communion was over, I didn’t want to stay for them to finish the (really long) song they were singing, but I thought that I’d gotten that far and might as well stay.
I’m thinking of slowly getting Elsie ready to go to church with me, so that I can sit through the service without panicking. In two Fridays, Elsie and I are going to go to the church for her to meet my mentor, and maybe I’ll take her in and see what she does. Even if she sat on the floor by my feet, I would be so much more relaxed. I’m not sure what the pastor would say about that. I could e-mail him and ask.
Easter itself has been very relaxing. I helped my mom bake ten dozen cookies for my sister’s wedding, then I headed out to the pet food store to get Elsie some dry duck and grain-free food to use as treats for training (she likes it!). I took a nap in the house, with all the windows open, which felt incredible. Oh, and I ate a Cadbury Creme Egg and several Hershey kisses! Mmm!
So, Happy Easter to all.
He is risen– He is risen indeed!

>Tell the world

>I could tell you that 1 in 166, 150, 100, 91… you pick which study you want to believe… is way too many.

Or I could tell you to join one of the many Walk Now for Autism Speaks walks around the country and fundraise.

Or I could tell you to wear blue today.

But what good would that do? If I were speaking to the general public, I might recite statistics and whatnot. But you know the numbers. You know about the walks. You know about Light It Up Blue.

So what can I tell you? I can tell you what autism means to this girl.

Autism means both a blessing and a curse, but daily, I struggle to find the blessing

It means I desperately want to be like everyone else and struggle constantly to accept myself with my social and communication challenges.

It means I often see myself as “less than,” even though God created me– ME– in His own image.

Autism means being asked, “Wait, you can drive?” or “You went to college?” on an almost daily basis.

It means having people automatically talk to your mother or your friend when you’re out, because they don’t know how to talk to you.

Autism means finding great joy only in things so obscure that no one else cares about them, it seems.

Autism means anxiety so great that you’re scared to go to church and terrified to pick up 3 things at the grocery store.

Autism means 5 emotions: Happy, sad, frustrated, excited, scared… and often, I can’t even tell those apart.

It means that your automatic reaction to most of these emotions, even if the good ones, is to hurt yourself. It means not knowing why you do it.

Autism means that, by having read this, you have a job to do. Tell just one person that today is Autism Awareness Day. Explain to them what autism means. If you don’t know how, just share my blog with them or update your Facebook status. The only way that people with autism will be comfortable in this world is if the world knows who we are, what we’re all about, what we need. That’s way too big of a project for one person.

Who will you tell today?