>Cushions of energy

>Last week, my therapist handed me a CD. “Try this,” she said. “Every night before you go to bed, do this guided imagery exercise. Let me know how to like it when I see you next week.”

I took the CD home, and that night, dutifully broke out and dusted off my CD player. I put the CD in and loved the music right away.

First, Ms. Naper… Napa… Nap..ar.. stek? told me to go to a place that I find peaceful and relaxing, in my mind. She suggested against a large oak tree, or on the beach, or deep in a field somewhere. Ignoring her suggestions of what I should find comforting, I picked my safe place: under Leigh’s bed, when it used to be lofted. Okay. So I imagined how it looks (a little dark, a little crowded, but nice and tight and safe), sounded (err… sometimes I hear Leigh typing?), felt hard, that’s easy) and even smelled (like a room, duh). I got the feeling that my safe place didn’t exactly fit the mold here, but that’s okay. It’s mine.

And then we got… abstract. She instructed me to imagine a cushion of energy, drawing every good thought and feeling that anyone has ever thought or felt about me toward myself. I’m sure that’s great for some people, but I can’t see thoughts and feelings, so how am I supposed to draw them anywhere? My visual brain can’t handle the non-visual aspects of this imagery. It’s too abstract and complicated.

I realized, though, that I do really like the music that plays in the background of the CD. It’s very calm and relaxing. Something like this, minus the talking, might do a little better. I can ask if my therapist can get a hold of that if I give her back the imagery CD. Or, Leigh’s friend has a CD that has classical music with random cats meowing throughout. Depending on the tempo of the music, that could be very relaxing. Or what I really want is a CD with cats purring. Does anybody know how to make that?

That would be amaaaazing. A-meow-zing? Hahaha…

(A little update: I found a CD that uses cats purring with classical music as a backdrop and is meant for relaxation. Oh my goodness. All I need is $20. Maybe once I start working, I can get it and fall asleep in peace!)

>Day 1

>Today shall go down in history as Day 1 in my life. It’s truly a new beginning.

I got up, got the testing finished up for Cushing’s at the hospital lab, and headed off to feeding therapy. I waited for a half hour once I got there (hey, the service is incredible, so I’m not going to complain). Christine, the OT, called me back and did some muscle testing with me and found that I have slightly low tone, but nothing to be worried about. Then, she mentioned that she noticed that I move very stiffly. Instead of moving individual parts of my upper body, I keep it all connected. She showed me how to stretch my neck and shoulders, one muscle at at a time. Then we did an activity where I keep my feet facing front, reach across my body, and hit her hand behind me on the opposite side. It was to practice crossing midline and turning my body. She wants me to practice these exercises at home, too, and I will.

Amy (the ST) came in and set up the table for us to eat. First, we each got a baby carrot. We touched it with one finger, then two fingers, then held it, then put it on the back of our hands, then rolled it between our hands, then walked it up to our shoulders, then held it on top of our heads, then touched it to our cheeks, then to our lips, then painted our lips with it, then touched front teeth, back teeth, and all the teeth in between, then put dents it in with our teeth, then took a bite and spit it out, then took a bite and chewed it and spit it out… and that’s as far as I got. I couldn’t swallow the carrot.

Next we took a lemon and did everything up to holding it in our teeth. We did honeydew (they called them “green squares”) and I swallowed that, even though I didn’t really like it. Then we took a break and did a preferred food, rice cakes. Next we did mandarin oranges, which I liked and swallowed, with great effort. After that it was back to a preferred foot, this time Babybel cheese. Finally, we did apple, and I chewed and swallowed that. We practice “losing” the food in our mouths and collecting it back together and swallowing it. Because I don’t chew well, I lose food easily in my mouth, and it makes me nervous, especially so when it’s a nonpreferred food. But practicing, knowing I could spit it out at any time, really helped.

After that I went to the autism research study and did attention training on the computer, which is boring. I get tired of it and tell them when I’m done. I found out about another study they’re doing with fMRIs and I was really, really interested… but darn it, my IQ is too high. It’s not even that high! Gosh. Why are they afraid of a little IQ, eh? Also, they won’t take me because of my diabetes and my insulin pump. Ridiculous. I really wanted to do that study.

Finally, I met my friend Becky at the mall. She lives almost an hour away, so we don’t see each other too often. But we went shopping! I found cat salt and pepper shakers and a cat clock, which I promptly told my mom I want in my apartment someday. Then we spent ages shopping for plain black leggings. I wanted some to wear under skirts and pants, to block the feeling of the pants, and just to wear around the house, because of how comfortable they are. It took us 4 or 5 stores, but we found them.

When I got home, after dinner, I wanted to show my mom how I could do the oranges. She started to cry! She said she wished my dad could see me (I called him, then). My stepdad insisted that I would be able to eat a carrot if I dipped it in peanut butter… Mom said, that’s gross, don’t do that. He said, “Humor me,” so I did it, and I swallowed that little bugger!

Day 1.

>Autism and Elsie

>I don’t know where I would be without my cat. Not a cat, but this cat. Our relationship is such that she is perfectly in step with me, all the time. As I type this, she’s sitting directly behind my head, purring.

One of the ways she calms me down is by that purring. I love it. I hold her and rock back and forth and listen to her purr, sometimes for a half hour. She just sits contentedly in my arms and purrs. I think you can see how comfortable we both are:

http://www.youtube.com/get_player

When I had my evaluation done at a major medical center, they noticed that I still have some echolalia, or speech that isn’t exactly my own. You can see it here. When my mom gets home from work, she says, “Hi, Els.” I say it… all the time. Sometimes I even say it when Elsie’s not there, to get her to come. So, it’s functional, but it’s still the remaining vestiges of echolalia.

http://www.youtube.com/get_player

My extreme kitty perseveration has paid off, at least in one way. This is one smart cat. She not only comes when I call her, she follows very closely behind me. Here, watch!

http://www.youtube.com/get_player

And, finally, here’s another example of Elsie’s calming methods. This is a bad example of it. She was following me around, and I picked her up and put her on the couch. She clearly wanted to walk around and so got up at the end, but usually, with the lights off, she would lay there in her little kitty ball for as long as I needed her to do it. I think she could tell I was trying to make her perform, and that I didn’t really need her right then. Oh well. You get the point. Talk about bliss!

http://www.youtube.com/get_player

>Uh oh

>Houston, we have a problem.

If I make a documentary-type video, I’ll have to edit it to make it decent. So I tried to make and load an edited video (about Elsie and I), and what do you know, it won’t load. I tried for hours, and it “processes” for like nine years, but it won’t finish so I can publish the post. So it looks like there won’t be a documentary video. Sorry, friends 😦

In other news, I’m perseverating like crazy lately. I’m usually fairly obsessed with Elsie, but it’s been worse than usual. I’m anxious when she’s not right in the room with me. She’s not always with me… she likes to make sure I’m settled with whatever I’m doing, and then she once she’s satisfied that I’m alright, she likes to lay in the family room. If I call her, she comes and sits with me for a bit, but then when she knows I’m fine she goes back. I feel like I’m constantly interrupting the poor thing to come see me. Perseveration reaches a point where it doesn’t feel good anymore. It starts to make you feel a little nuts.

I debated about posting about this, but it’s something that’s going on in my life and I don’t feel too weird about sharing it. I went to see an endocrinologist about my mysterious weight gain (80 pounds in just a few months despite a low calorie intake). They think it’s something called Cushing’s syndrome, and I’m going through the testing for that. The bad news is that Cushing’s is almost always caused by a small brain tumor, which requires surgery. I would appreciate good thoughts and prayers sent my way… just that they figure out what’s making me gain weight and feel so blah. I don’t usually post about things that have nothing to do with my autism, but hey, that’s also part of my life, and I need all the prayers I can get. Thanks, guys.

I’m off to the mall with my mom. We’re shopping for my sister’s wedding shower. Here’s to hoping it’s not too terribly crowded! After that, Justin and I are going to church and then to Chipotle.

Mmm, Chipotle!

>I need your input

>Back in October, Leigh suggested that I make a video during the Walk Now for Autism. I was too shy about the whole thing, but I’ve been thinking about it. And I think I’d like to make a video about autism, just not one in which I’m a central player. I think I’ll go around and ask a question, the same question, of the people in my HFA/AS group.

In the meantime, I need to figure out how to make videos on my camera and how to upload them on here. I practiced on my favorite subject, of course.

http://www.youtube.com/get_player

So if I were to make a video, going around and asking my fellow autistics a simple question about living with autism, what would you like that question to be?

If you don’t leave me suggestions, there can’t be a video.

Ready? Go!

Okay, I can’t leave without posting these two pictures.

This one is what happened when I tried to take a nice, smiley picture of Elsie and I. Instead, I got puh-lease put me down kitty and glasses sliding off and not looking at the camera because, wow, that’s a really bright light Lydia.

And this is one of the ways that Elsie helps me to stay calm… she pushes her forhead against mine, as hard as she can. I love it.

>There will be salad

>Yesterday morning, I got up at 6:30 A.M. to go downtown with my case manager to see about getting cash assistance to tide me over until I start working. It seems like they had already made up their minds before I got there and just needed me to sign the papers. Today, I am $102.50 richer than I was yesterday. I get $102.50 every two weeks, until I start working, at which point I lose the benefits. That’s fine with me! I have no desire to stay on government funds any longer than I need to. Also, if I get SSI (er, when I do…) I have to pay back the months of cash assistance I got. They’ll take it out of my lump sum of back pay. Oh well. It’s doing its job right now, which is putting gas in my car and allowing me to pick things up at the grocery store when I need them. That’s all that really matters.

After the interview, I hurried back home and picked up two foods I will eat (yogurt and cereal) and one that I won’t (an apple) and headed to my feeding clinic evaluation. I met with the speech therapist (ST) and the occupational therapy (OT) and had my snack. They had me eat several different foods and noticed that I don’t chew right. Apparently, children and adults chew differently. Children chew up and down, and adults have a rotary chew pattern. I still chew like a child, which makes it difficult to manipulate fibrous foods like fruits and vegetables. They think that, early on, I developed a dislike of these foods because I couldn’t manipulate them correctly, and over time, came to fear them. So, the ST is going to work on chewing with me, and the OT is going to do sensory-based things with the food. The OT is also going to do… OT (handwriting, hand strength, balance and coordination, sensory stuff, etc). We also talked about the benefits of Therapeutic Listening, and we’re going to try to get me into that.

So, that’s where things stand. Next on the list is to see about getting food stamps so that I can buy some of my own food and let my mom off the hook a little. Onward!

>A little bit embarrassing

>Confession time. I hate showers and brushing my teeth and changing my clothes.

Of all the things I struggle with, this might be the most embarrassing. The sensory experience of it all can be just too much.

As a kid, I screamed in the bath tub. Screamed bloody murder. It wasn’t enough to put a washcloth over my eyes. My parents finally resigned themselves to not bathing my everyday, and only washing my hair every few days. When I was 2, my mom found a blue, foam ring that fit on my head that kept the water from falling into my eyes. It helped, but still I would all out melt down at the prospect of a bath. My hair was actually fairly long and got knotty, and I hated my mom brushing it. It was such relief to get it cut when I was 5, nice and short to my shoulders so that it only had to be brushed after it got washed, which wasn’t that often.

I stuck with the every-other-day baths until middle school, when I started to shower and did it daily. Middle school and high school were the years of the least sensory issues, and thankfully, I was able to shower daily. But in the last couple of years, I’ve started to have trouble again.

I usually shower daily, but the whole process is a nightmare. Going from clothes to no clothes sucks, then the water pressure hurts, then the towel makes my skin burn, then changing into new clothes is the worst. I hate new clothes. First of all, they’re stiff from being washed, and secondly, they feel different than the clothes I’d had on. I don’t do pajamas for the same reason; I just sleep in whatever I’ve been wearing. As I just told Leigh, by the time I’m done, I feel like someone has just peeled off the top layer of skin, leaving me a raw, open wound. I hate it. Brushing my teeth is rough too, sometimes, but it doesn’t hurt like showering. It’s just uncomfortable.

I’m starting to run into problems with clothes, too. You know that I only wear sweatpants, right? Well, my mom found me a pair of jean leggings with an elastic waist. Finally! A way for me to wear jeans and look halfway normal! Maybe it’s because I got used to those, but now I can’t even wear my sweatpants. Ughhhh. The hurt my legs. So I’m sitting here in leggings (but they’re capri length, so I can’t wear them out). I’m not sure I could get away with wearing leggings like that out in public, either… I’m super muscular, but last year I put on a good bit of weight due to meds, and I don’t know how that would work. This might be a lesson in self confidence though, as i might be reduced to wearing only leggings. I don’t know what else to do.

I really need a shirt that says “Will work for cats.” Because that’s the agreement Leigh and I have, now. When I shower, I get a Lolcat. Yes, it’s come down to that. I don’t look at Lolcats online very often, because they’re almost too good. So. Many. Cats. I can’t contain my excitement, and it turns from something good to something bad. It makes my heart beat fast and my hands sweaty and it’s just… it’s cat overload. One cat at a time is good, but all at once is overwhelming.

So, yes, this is a little bit embarrassing, that I don’t want to shower, but at the same time… this is autism, you know?