>When big deals become little

>I was watching Supernanny, another new favorite TV show, and the mom was obsessed with dressing her children just so. It made me think about how I no longer worry about what I’m wearing. I have extreme tactile sensitivity. I didn’t wear a pair of jeans until 6th or 7th grade… everything had to be elastic waists or dresses. No lace, nothing scratchy. No buttons, because they require a stitch, and I can feel the stitch. Nothing sewn in, like a patch. Even elastic waists had to be wide enough that they didn’t remotely cut into my waist, or I’d have a melt down. I wore jeans regularly from 9th grade until this past year, when they became unbearable again. In fact, lately, I’m extremely uncomfortable for an hour or two every time I have to change from one outfit to another and my body has to adjust. Yes, everyone wears jeans and what I call “nice shirts.” And yes, I live in yoga capris and t-shirts in the summer, yoga pants and hoodies in the winter. I got over that being a big deal. I can go to class, go to the mall, at this point, even go to church like that. It’s no longer a big deal.

Not that I completely don’t care how I look. I like skirts a lot. They’re super comfortable too, and I think they’re prettier than pants. Since I only wear cotton t-shirts and cotton pants, I don’t always look the most feminine, and I am a girl, after all. Anyway, I found two long, cotton skirts at the mall the other day, and I got two t-shirts with pretty designs on them to match. Now, I can go to church and look appropriate and be comfortable. Sometimes, I can find the best of both worlds!

Another thing that has ceased to be a big deal is my diet. Most parents fight with their kids about eating vegetables and healthy things, right? Not my parents. As a child, I ate and drank the following: apple juice, fat free vanilla yogurt, peanut butter, one kind of cheese, one kind of bread without the crust, margarine, small amounts of milk, pudding, and small amounts of ice cream on occasion. That wasn’t the majority of my diet. That was it. For years and years, that was it. Between that and a myriad of gut issues, that’s what had my mom going to doctors. My kid won’t eat. I was always in the 90th percentiles for height and weight, but I wouldn’t eat. Forget vegetables, my mom wanted me to eat pasta, drink milk, eat crackers, chicken. Normal kid things. Anything. A good day was when I eat three different things in the same day. I ate quite a lot of bread and butter growing up, and I ate a ton of yogurt. I was almost addicted to it, my mom said. Apparently a lot of kids who have gluten issues are like that. I’m happy to say that now, as an adult, I’m much better. I still can’t do raw vegetables because of the texture, but I can eat cooked broccoli, green beans, carrots, and cauliflower. I can eat bananas, raisins, strawberries, and cooked apples. I can eat rice, GF pasta, GF breads and crackery things. I drink almond milk, and I eat eggs probably 4-5 days a week. Because we know where I came from, not being able to munch an apple to just go out to a restaurant just isn’t a big deal to us.

The last “not a big deal” is one I’m still working on. I hate to cry or stim in public, but I definitely do both, and frequently. A lot of stimming can pass off for being fidgety, and that I’m okay with; I’d never be able to control that. But when I really get excited or frustrated or just when I really need to do it, rather than just let it happen, I want to go hide and get it out of my system. In case you’re wondering, I often spend a few extra minutes in the bathroom when I’m out either to hold my ears or flap my hands. Also, when something goes wrong, when plans change, when it’s too loud or too crowded, I cry. I hate doing it when people are around. I squeeze my hands and bite my tongue and do everything I can not to cry. Even when I get back into the car, or whatever, I still try not to cry. I want to be normal. I don’t want someone to have to say, “Oh, she has autism.” That’s what it comes down to. I’m working on getting over that though, because the fact is, I do have autism, and it’s not going anywhere. I shouldn’t be ashamed of it. I should be able to let my mom or let Leigh say “She has autism. She’s upset/excited, but she’ll be fine, thanks,” and keep going on with my day. It’s just not a big deal.

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>Friendships

>There are things about autism that are positive. I have a fantastic memory. I can read at the spread of light. When I can focus, I can really focus. I have a connection with cats like nobody I know, and I’d like to hang onto that, thanks. Then there are things that are neutral. Sometimes, I need to type instead of talk. My hands don’t like to my still. I like to watch the same movie 50 times in a row. There are things about it that make life more difficult. At 21, I’m not ready to move out on my own. I can’t work full time. My organizational skills… don’t exist. But what I want to talk about now is possibly the most frustrating, the most isolating, the most debilitating aspect of autism: friendships.

Growing up, I had one best friend. I’d known her since I was 6 years old. I had this friend all the way through until we got to high school, when the pull from making other friends got to me too much, I think. Her other friends thought I was weird, and they made no secret of it. They blatantly wanted nothing to do with me. They forced her to make the choice between me and a normal high school social life, and I can’t say that I blame her for the choice she made, but it certainly hurt. Aside from that one person, I’ve always tried to hold back, tried to contain what makes me different. It results in having acquaintences that are hard to maintain, because it’s hard for me to act that way, and that are hardly worth having because I don’t act like myself.

Before you say, “Just be yourself!” it’s so not that easy. I want to just be myself, so badly, but if I did that, I’m fairly certain that anyone would go running the other way. Even around my very closest friends, those who really know me, I have to work extremely hard. I have to get the right words out. I have to remember to say “I’m frustrated” and not just yell at them, which would scare them off. I have to remember to use words, not tears. I have to talk about things that they want to talk about, even when I don’t understand them. I have to figure out how to respond, and show I’m listening, because I’m almost always listening. I have to limit how much I talk about my cat. I can’t help but think that anyone, anyone, even my own mom, would be run off by what and who I would be if I didn’t work so hard to control myself. It’s not easy work, either; it takes a lot of effort.

In general, I can do it. I wear a filter, all the time. Well, it falls off when I’m by myself, but as long as someone else is around, that filter is there. It’s basically a filter of impulse control, that makes it so I can do everything I just listed above. But sometimes, that filter comes loose. I know that people can tell when it does. When my emotions are intense, it tends to happen. And every time it does, I’m afraid that I’m going to run off whoever it is I was around.

Friendships are really, really hard. I wish I didn’t have so much ugliness in me that needed to be filtered. But, I do, and so I’ll keep that filter on. The few close friendships I have are worth the hard work it takes. Autism, or anything else, isn’t going to get in the way of that.

>Big plans, I had

>I had big plans. Yes, those were some big plans, I had. I was going to tell you something really, really exciting today. But alas, those plans have been squashed. I’m sorry, friends; this post will be a disappointment. Be prepared to get flexible.

My mom and I found a group of adults with HFA/Asperger’s that meets in my city. Now, it’s mostly men, and it’s mostly Asperger’s, but there’s are a few women and girls, and a few with PDD or HFA. There is actually one other girl who has HFA, and I really wanted to meet this girl! I joined the group online. They were going to the baseball game today. Great! I suffered through 4 hours of work, made even more painfully slow by my anticipation, and we went to the ballpark. The group was meeting at 1:30 at the statue, but I had to work, so we got there at 2:30. The group leader (a parent of a boy with PDD) said that she would leave mine and my mom’s ticket at the window. We parked. We went to the window and… no tickets. What? Yes, they had the leader’s name, but no, they didn’t have any tickets. What? Under the group name? No, no tickets. I’m sorry ma’am. No tickets.

No tickets. No game.

I. Can. Be. Flexible. I will not cry. I will not shout. I will not melt. I will be flexible. I will go into my own world, texting Leigh a few times, until I can come back out and be calm. And, amazingly, I did just that.

We got ice cream instead (Rita’s chocolate ice with coffee custard, anyone? Mmm, ice cream). We looked at cats in the pet store. We got catnip for Elsie. Mom made it as good a day as it could have been, other than going to the baseball game with the potential of a new friend. When I got home, I e-mailed two of the group members (the girl who has HFA, and a guy who has Asperger’s and loves cats). I explained that I missed the game today because of a mix-up, but that I really wanted to make a friend in the area, and what do they like to do? And I see that you like cats. I love cats. So, anyway, maybe that will go somewhere.

I’d been looking forward to this event for a month. Now I have to wait another month for the next event. Sigh. I’m sorry for the disappointing post, friends. Sometimes, you have to be flexible, though. I knew you could do it. And hey, you can be okay, because Elsie got some catnip out of the whole deal, and she’s really cute when she rolls around in it!

>Scattered thoughts

>

I don’t really know what to write about. I can’t focus enough to pick a topic and stick to it. Every time I start something, my mind skips around to something else. In general, I have a really hard time finishing what I start… at worst, it’s hard to even finish a thought. This could be considered at worst.
Leigh suggested writing about how upset I get when my schedule is changed. Last year, we had plans to spend a weekend at her house, five hours away from school. When we had to reschedule for the next weekend instead, I shut down and didn’t want to go at all. That’s how I cope with schedule change. I just don’t go to whatever it is. That can cause problems when “it” is work or class or something else that I’m expected to attend.
I considered writing about friendships and autism. Growing up, I had one “best friend” from down the street who I always played with, and that was it. When she started to make other friends in middle school, and I didn’t, I just spent more time by myself. Then in 9th grade, when she realized that she basically had to choose between all of the “other” friends and me, because I wasn’t “cool enough” to hang out with all of those girls (not to mention, didn’t want to hang out with them), she ditched me. I didn’t even play with other kids until I was in 2nd grade… I completely ignored them. Big surprise, eh? My one friend and I played very specific things… when she tried to get me to play Barbies, she’d always tell me, “You’re doing it wrong!” Friendships have always been hard for me. At this point, I don’t have any friends in my city. My closest friends are at the college I graduated from last year, an hour away. That’s why I don’t write about “oh I went here with so-and-so…” I don’t go here with so-and-so. I stay home, with my mom. I have a couple of very, very close friends, who I know won’t be scared away by the difficulties that autism presents. I’m so grateful for them. Still, it can be hard work for me not to run and hide from them when it gets to be too much.

I thought about writing about “sharing enjoyment.” There are a couple symptoms of autism that I don’t have, and that’s one of them. Please, please laugh with me. I have a really hard time doing the whole pretending to be excited for someone thing. Example: my sister is shopping for her wedding dress. I love my sister, but I don’t care about dresses. Yes, they’re pretty. I will look at it and say “that’s pretty,” but that’s probably it. However, I desperately want other people to feel excited about the things that I’m excited about, like the autism walk. Like cats. Especially cats.

Then, I thought I could write about the baseball game on Sunday. My mom and I found a local autism group that goes on social outings once a month, so on Sunday, we’re going to the baseball game in the city. I’m excited, but I’m nervous, too. The few men with Asperger’s in my social skills group weren’t very much like me… what if I’m nothing like these people? I want to meet people who are like me. It would be a good feeling.

Anyway, there you have my scattered thoughts. I’m sorry they’re not more together. I’ll leave you with a picture. I went to visit my aunt and uncle’s cats. They have 5. One of them, Murphy, is an orange Maine Coon, and he’s massive. I’m talking a very, very big cat. He’s beautiful, and incredible, and so much cat to love!

>Quiz Time! Part 2

>Well, you all did a lot better than I though. I’m very impressed… but then again, you all live with autism, so maybe I should have expected this!

I’m going to back up a little first and explained where I’m coming from with this one. Though my mom and I get along wonderfully, the big bone of contention she has with me is that I’m negative. She says that when I’m upset or have a problem and she offers suggestions, I shut down each and every one. I always have a reason why that won’t work. Lest you think that only my mom offers suggestions, it’s actually what most people do. Let’s go back to the cat conversation and see how that tends to look when someone would approach me.

Me (as you found me)
You: Lydia, what’s wrong?
Me: My kitty’s sick. The doctor said it’s probably her kidneys and if it is her kidneys, it’s fatal, and Mom says that if we lose Elsie, I can’t get a new cat. I can’t live without a cat. I need a cat.”
You: Well, hold on now. Does your mom know how much you really need a cat?
Me: Yes, she says that it’s because my health insurance is so expensive, that we would need the relief from not having to feed a cat everyday.
You: Could you offer to pay for the cat food?
Me: (Tears in my eyes) No, I can’t, because I don’t have any money already and I can’t work more hours than I do.
You: Well, what about volunteering with cats?
Me: (Hitting my knee repeatedly But then I can’t stand being out any more hours than I’m already out. I’m too overwhelmed.
You: Okay, not a problem, so you work 2 less hours a week.
Me: (Crying) But I can’t! I already work the minimum number of hours that the company lets me work!

Okay, okay, okay. I never said it was pretty, but it happens all the time. Leigh and I had a long conversation about this as we were falling asleep the other night and sorted out the problem. The problem isn’t just the cat, the problem is that I’m upset. You would think that dealing with the cause of the upset (the cat) would solve the problem (the upset), but it doesn’t. I’m too upset to get out of it. Apparently, though, it makes total sense to most people to try to help me solve the cause of the problem, because that would then solve me being upset.

IT DOESN’T WORK THAT WAY.

The better way to do it would be this:

You: Lydia, are you upset?
Me: Yes. My kitty is sick.
You: Do you have cats? (I carry around laminated pictures of cats, 10 of them, on a keyring in my purse for instances such as these. They work wonders).
Me: Cats! I love cats.
You: You’ll be okay. You’ll feel better.

Sometimes, I can even get myself going on why everything is wrong and nothing will work. Don’t get sucked in. Be part of the solution, not part of the problem! Anytime I’m anything but happy, anything cats works really well. One night, I was having a full blown melt down in Leigh’s room… during finals week. My grandma had died just ten days before, and I was a mess. I don’t even remember what else was happening, but part of the problem was that I wanted to be alone because I knew I was going to melt, but I couldn’t get my body to cooperate and do what it needed to do to walk down to my room, so I was stuck in Leigh’s room. I finally lost it while still there. She had finals to take and didn’t have time to try to reason with me or anything else, so she went to Fickr, searched “cats,” and clicked slideshow. There. Several million cats to successively run across the computer screen. I think I spent a few hours pointing and giggling. They glitched at one point and I started crying again, but she got them going again. Cats work wonders.

The other key is to remind me that I’ll feel better. Once I remember that it’s not permanent, I already start to feel better. When I’m feeling bad, it feels like I’m going to be that way forever, like I’ve been that way forever, like there’s no way out. So, remind me that I’m okay (avoid that melt down) and that I’ll feel better. Also, staying nearby is always good… it’s a lot easier to melt down when I’m by myself.

So, there you have it. I’m impressed that no one did the whole conversation thing. Gold stars, all around!

>Quiz time! Part 1

>I was thinking… rather than just tell you what the right thing to do in this upcoming situation would be, I think we’ve been acquainted long enough that we should see if you can get it right. So, it’s quiz time!

You walk into the room, and I’m sitting there. I’m staring at my cell phone, not doing anything with it (there’s a picture of a cat on the front of it, always). I’m flicking my fingers on my other hand. You can tell that I’m agitated. You ask what’s wrong. I say, “My kitty’s sick. The doctor said it’s probably her kidneys and if it is her kidneys, it’s fatal, and Mom says that if we lose Elsie, I can’t get a new cat. I can’t live without a cat. I need a cat.” I’m almost crying, but not quite, and obviously restless.

What do you say?

For the record, this isn’t an easy question. Also, Leigh, you’re not allowed to answer this. Anyone else, if you’re reading, I’d love a response.

Check back in a few days for the right answer and explanation.

>Don’t be a jerk. This is how.

>This post would be written by Leigh, if she weren’t busy cleaning. I’m visiting her, and we just had a little mishap that she insists I need to blog about. She even gave me the title, so how could I turn her down?

Leigh lives in an apartment this year, and she and her three apartment-mates have really taken to decorating. As we were working on putting a pretty black ribbon around the top of the living room walls (to imitate crown molding, apparently), a cactus managed to basically frisk me. It caught the inside of the back of my shorts and pulled itself over, right up and out of the pot. It’s a little cactus, kind of round, the size of a baseball, maybe. Still, it spilled dirt. After controlling my giggles, I crouched down to help Leigh reset the poor little guy and replace his dirt and…

I really knocked the whole thing over. This time, almost all of the dirt spilled out of the little pot, and more got on the carpet. I plopped down where I was and said, “Okay, that’s it, not touching that cactus anymore!” Leigh sent me after the little vacuum cleaner, and I cleaned up the dirt around the floor while she once again reinstated our cactus friend.

Leigh says, “See? I could have gotten mad. It could have messed up our morning. But I just gave you another job to do that really did need to be done. I worked around it.”

She thinks some people in my life need to learn this lesson about trying to work with me, and I agree. Rather than insisting I (or anyone!) do things I can’t do, give me a job I can do just fine. Don’t get angry, or “don’t be a jerk,” as Leigh says. Not everything has to be a big deal.