Tuesday, September 29, 2009

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.

Monday, September 28, 2009


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.

Sunday, September 27, 2009

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!

Friday, September 25, 2009

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!

Wednesday, September 23, 2009

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.


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!

Monday, September 21, 2009

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.

Sunday, September 20, 2009

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.

Friday, September 18, 2009

Kitty and the phone

I really, really don't like to talk on the phone. I have a really hard time understanding the other person, and I say, "what?" so many times, it can be embarrassing. I get frustrated. I also can't seem to figure out that the person on the phone doesn't know what's going on where I am, and I confuse whoever I'm talking to. I just really, really don't like to talk on the phone. If I'm even a little stressed out, it's even worse. If I'm stressed, I usually end up melting down over having to talk on the phone. It gets interesting when I need to talk because I'm upset, but the only way to do it is to talk to a friend on the phone, which is what happened last night.

My kitty has been sick. You know how much I love and need my kitty, right? I need cats like you need people in your life. They're that important. Well, she's been throwing up daily and peeing a lot. We took her to the vet to get her teeth cleaned because her gums were infected, and he was extremely concerned that her kidneys were failing. She's close to 12 years old, after all. Kidney failure is fatal. My kitty. Fatal. Now, I realize that I'm going to lose my kitty at some point, and being that she is nearly 12, I know that it's going to be sooner rather than later, unfortunately. The problem is that because my health insurance is so expensive, my mom says that we couldn't afford to have a new cat. We would need that bit of extra money that we currently spend to feed the cat. I'm still waiting to get on state health insurance, still waiting on SSI. It's taking forever. Last night, I just about lost it.
I texted my friend Emily, hoping that she'd be able to go online so that I could explain the kitty situation and ask her to pray about it. She couldn't go online and called instead. I was upset and would have exploded if I tried to talk on the phone much, so after some whining and "I don't know, Em" and "I don't want to talk" and some more "I don't know!" I got off the phone. I texted her and explained. She prayed.
God answered her prayer with Magic Words: it will pass. The hopeless feeling, the guilty feeling of taking my parents' money, the panic over my cat... it will pass. And right then, it did start to pass.

I got the phone call from the doctor at 9:30 this morning. The verdict? She has an auto-immune issue that's causing her muscles to break down and upset her stomach. She needs different food and pro-biotics, and she'll be okay. Her kidneys are a-okay. Fore the foreseeable future, all is well. Praise God.

Here's my beautiful kitty, right after she got home yesterday, still partially under anesthesia. Her head was bobbing all around, so I had to hold it still. She was pathetic yet oh-so-adorable.

Elsie and Lydia, together again.

Wednesday, September 16, 2009

Magic Words

Maybe there's an official, academic term for it out there somewhere, but around here, they're called Magic Words. I wouldn't get through a day without them. Their power is undeniable, their familiarity so comforting.

Wait. You don't know about Magic Words? Oh, we need to fix that!

It all started with "not an option." When I get extremely overwhelmed, stressed, frustrated, or sometimes I'm not exactly sure what the words are to describe the feelings, as much as I hate to have to admit this, I can get self-injurious. The most common one is probably scratching my hands, which get really itchy when I get stressed. I hit, bite, chew, pick, scratch... you name it. Under stress, it's all worse. In the moment, I'm usually unaware that I'm doing it. Sometimes, though, I can feel the urge to engage in these behaviors creeping up. It's so hard to fight of those urges. So, so very hard. Try holding it when you have to go to the bathroom for, oh, say, a day and a half. It's that hard. It just wants. to. come. out. One day, Leigh said, "Stop. It's just not an option." After telling me that it's "not an option" probably a hundred times, I started to say it myself, and then started to say it to myself. I can't reason, I can't convince myself, I can't see the consequences of two hours from now... don't even try those tactics, because they're too complicated. Just remind me: not an option. I might let out a frustrated growl, but at least for the amount of time that "not an option" is in my head, my hands will stay down. It might only be a few seconds, or it might be five minutes... but my hands are down.

Other important Magic Words are "okay." Work is rarely a breeze to get through, so I break it into chunks. I can be okay until 4:00. I can be okay until 6:00. I can be okay until 7:00 when I go home. "Being okay" is the opposite of melting down, so that's what it's used for. If I say I'm okay, I inherently cannot be melting down. If you tell me "you're okay," unless I'm already starting to melt, I'll say yeah, I'm okay, and okay I will most certainly be, for a while. "I can be okay" has gotten me through fireworks, the mall, and many days of work. I'm not describing what I already am... as in, I feel fine, I'm okay. I'm causing the behavior. By saying I'm okay, then all melt downs are warded off for the time being.

I asked Leigh for some new Magic Words lately for a situation that kept popping up. What happens when I'm already kind of melting down, when I'm really feeling bad? I can't say I'm okay then. It took some going back and forth, but she came up with "it will pass." these words are not quite magic yet, because they haven't been used enough. Part of what makes certain words magic is that they've been repeated so many times that they immediately change circumstances. "It will pass" doesn't yet cause me to immediately calm down... but give it a few weeks, and these too, will be Magic Words.

I decided to write about this because I was hoping that one of you parents could use the idea with your kids. Magic Words are really, really comforting to me. The words change the bad situation immediately. Any little kid that melts down would take comfort in that, too... knowing that he can "be okay" when he's about to melt or that "it will pass" when he's losing it. I'm sure I'll continue to add to my repertoire, now that I've discovered how wonderful a thing I've come across here... maybe you can figure out what Magic Words you need and work them into your life.

Monday, September 14, 2009


Autism isolates, in more ways than one.

It isolates me from my peers, who are going off to get jobs, rent apartments, and enjoy relationships. I'm still struggling to work 16 hours a week. I'm nowhere close to being ready to live on my own... even in college, I couldn't handle taking my medications and getting them refilled on time. I would forget to eat and paperwork would stack up to insane heights, with me too anxious to approach it and not knowing what to do with it when I did. Relationships? As in, with a boy? Sometimes, I wish for one but I'm so not there yet. I want to be someday, but it's not yet, and please don't hurry me.

It isolates me from meeting new people. After the church service every week, everyone goes downstairs to talk and enjoy each other's company and eat desserts. Never mind that desserts tend to include gluten and therefore I can't eat them, I would really like to actually meet the people we've seen in church for the past year. The problem is that after 90 minutes of being quiet, sitting still, and listening, and then going down to a small-ish room that is packed with people, I'm not the easiest person to meet. I usually have some kind of fiddly toy in my hands, eye contact is long gone, and words are few and far between, in that kind of environment.

Autism also isolates me from my family and close friends. When I lose my words, it's all but impossible to communicate with them. Yes, I can often still get out "stop it" and "okay," but the things I really want to say, the things that make a relationship, that make me, are gone. I so badly want others to share happiness with me, but the way that people do that with one another is so complicated. My way is straightforward: my cat. I bring my cat to my mom. If my mom would just pet her, wouldn't she be happy? I can't understand how my cat doesn't make everyone as happy as she makes me. It doesn't make sense. I'm alone in my happiness. I want to share joy with others, but so often, I'm alone with my frustration, my fear, and my joy.

So part of "being in my own world" is that I want to be, and part of it is that autism leaves me there without a choice.

Friday, September 11, 2009

10 things, no questions

Ten Things That I Wish You Would Accept, No Questions Asked:

1. I can be surprisingly good at one thing (say, remembering conversations precisely as they happened many years after the fact) and surprisingly bad at another thing that you might think should be so much easier (like keeping track of receipts or remembering the procedure for filling a prescription).

2. Just because I have the words to type it does not mean that I have the words to say it.

3. I really do hate to melt down, especially in public. If there were another way out, I would always take it.

4. I never play stupid. If I ask a question or say I don't get it, it means I don't get it. Please don't make me feel dumber by saying that I'm faking it, just because it seems straightforward.

5. What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day... or at least until I change clothes. If I'm crabby, it's because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.

6. I can't control my excitement over cats. So if you mention cats or point out a cat, realize that I'm going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?

7. I am often completely unaware of self-injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I'm agitated for some reason. In the moment, I don't know that I'm doing it; if made aware, it's so compulsive that I almost physically can't stop myself. But using my head, obviously I don't like the results of it.

8. I am exactly the same person inside regardless of how engaged (or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I'm reacting in that moment, but please continue to treat me like the same person that I am.

9. Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I'm disengaged and you're forcing me to "act normal," then no, I don't feel very happy. If you're interacting with me in a way that I can in that moment, then I can be as happy as I've ever been.

10. While autism does mean that I am absorbed within myself (aut means self, after all), that doesn't mean that I don't want you around. If you can come to me, rather than forcing me out of my world to come to you, then I'd love to let you in. There's a whole world in here... maybe you should check it out.

Wednesday, September 9, 2009

Update, again.

So, yesterday, after heaps of anxiety and several doses of Klonopin (it's similar to Valium) that weren't even taking the edge off, my mom and my therapist and I all agreed that I needed to talk to the HR manager about my hours. My mom took me into work to do just that.

I found her and said, all in one breath, "Hi. I'm Lydia, in photo. I just called you? I love working there. Really, I love it. But there's one problem, and that's that because of my autism, I can't handle the 8-hour shifts. The lights and the noise are just way too much for me after about 5 hours. I want to do a good job, and after 5 hours, I can't even speak to people anymore. My boss said that there was nothing she could do, and I know if she said that it's because she really can't because it's only she and I down there, but please, is there anything you can do? I'm willing to move departments, but I can't keep with the 8-hour shifts."

She called my boss up, and here's the problem with me only doing 4 hours: it leaves my boss unable to EVER take a day off. Ouch. So when my boss goes on vacation next week, if I can only work half days, who is supposed to pick up the hours if I can't? I wish I could just be tough and say, "Their problem, not mine!" but I feel awful. They do NOT have to create a shorter shift for me, legally, but for now they're going to because my boss wants to keep me there. I think they're going to hire someone new and split that person between two departments, photo and the childcare center (where I've also been a few times, where parents drop their kids off while they shop). Then, that person can help us out when we're stuck. If that doesn't work out, I'll be replaced and moved somewhere else.

I wish I could say that this solved my anxiety problem, but it hasn't. I'm still a mess. I'm going to have my mom call the doctor today or tomorrow and see what can be done, because I can't keep dealing like this. In the mean time, I have two 8-hour shifts left at work, today and Friday. If you could send me your positive thoughts and prayers, I'd appreciate it immensely, all of you who know how hard it can be out in the world.

Tuesday, September 8, 2009


Even when I can't speak, I still have so much to say.

There are the little words. I would like to walk to Dee's and see her dogs today. Are you coming home early from work? Hi, my name is Lydia and I am doing a walk through Autism Speaks; would your store like to sponsor me? I don't want green beans tonight. Little words, but they're still important. Where is my personality without those words, my wants, my likes, my dislikes? I need those words.

Then there are the big, exploding words. I hate autism for taking so much from me. Hate it. I'm extremely frustrated with my work situation. It's taking everything out of me, and I can't keep doing it. I was just in the hospital in June because my anxiety was so out of control; do you realize I feel nearly that bad again, just because of 8-hour work shifts? Why isn't anyone really listening to me? I'm desperately worried about my health insurance situation. Is this all because of autism? I repeat... right now, I hate autism.

There are words that I don't quite know how to get out. I feel... is this frustrated, again? I'm not positive, but it might be. Why am I frustrated? Well then, I'm certainly confused. I feel the scary, explosive feeling that I haven't felt in months. I don't know where it's coming from. I don't know how to stop it. I don't even know how to get it out.

The words won't come out with my voice. I can get some out... okay, I'm fine, ready?, stop it! But that's not enough. You wonder why I don't tell you when things are wrong... well, where are the words? Give me the words, and I'll tell you! For nine days now, I haven't had the words I've so badly needed. When will they come back? I need them. I'm afraid my anxiety will get too bad if I don't find them again. Aside from a couple of short Facebook conversations with Leigh, I haven't interacted with anyone since last weekend. I know that I have autism; according to one doctor I saw, I'm not supposed to care that there are other people in the world. I do care, and I want to talk to them. I want to talk to them so that I don't feel so trapped, so unable to communicate. I may not be able to verbalize, but I still have so much to say.

Sunday, September 6, 2009

Work update

I have to work 8.5 hour shifts. It's part of the job.

I can't quit my job because I need the money so badly. I also cannot work those shifts. Something just has to give, but what?

Why doesn't anyone understand?

Saturday, September 5, 2009

Too much?

Just to refresh your memory, in case you forgot, I work in a grocery store photo lab. Sometimes, I don't do anything for 2 or 3 hours straight. However, I sit under fluorescent lights with music playing in the background, which means that my sensory system does a whole heck of a lot, the whole time I'm there. No rest for the weary, eh?

For the past 6 weeks, I have been working 4 days a week in 4-hour shifts. That makes 16 hours. It was tough at first, and I struggled, but it was manageable. Just this past week, I started to realize that I could almost tolerate being away from home for those 4 hours. That's still a stretch, but as long as I did nothing else that day, as long as I didn't have to be social when I got home, I could do it. No, I haven't visited my friend Dee with her dogs in several week. No, my blood sugars aren't in any sort of decent control. No, I don't even stay on the same floor of the house, let alone the same room, as my parents in the evenings anymore. But I could do it. I was getting by, and slowly, I was adjusting.

Then I got scheduled for 20 hours this week, including an 8.5 hour shift today. I knew it would be rough. Did I mention that I had my bi-weekly psych appointment (with the only clinician in my life who seems to have the remotest understanding of autism, so I hate to break those appointments) this morning as well? Right. Well, I did. And did I mention that I've worked 4-hour shifts the past 3 days in a row and was therefore already worn out? Right. Well, I was. So I got up, and I went to my appointment, and I went to work.

I honestly don't know how I made it through. Well, prayer is how I made it through, because I wasn't going to. That music and those lights, they just get the best of me. My hands itch when I get stressed, and oh, I scratch them to pieces. I was scratching my hands, through trying so hard not to, stimming like crazy, and trying not to, spinning my chair, and trying to stay still. Nobody had better come up to the counter, because I can't guarantee that anything close to the right words will come out of my mouth. Get. Me. Out. Of. Here.

I can't contain my autism any longer.

You see, I can "pass for Asperger's" for very limited amounts of time. That's what I do at work. I pass. I force it all down as hard as I can and I get by for as long as I have to. I can do it for 4 hours. I can do it for 16 hours each week. But I can't do it for 8, and I can't do it for 20.

I need to talk to my boss and tell her that I can't do 8 hour shifts, only 4. I had the same problem with classes in college. As soon as I went over 16 credits, I started skipping classes so that I was only in class about 16 hours a week. Something about 16... it seems to be the magic number of what I can handle being out of the house. My boss is a really nice lady, I'm just scared to talk to her. I know that I can't be fired because I can't work an 8 hour shift (it would be discrimination, right?), but... but I'm scared.

Wednesday, September 2, 2009


Leigh and I are going to Baltimore on October 10th for the Walk Now for Autism walk for Autism Speaks. I'm SO excited!!

Just in case you feel like you just have to donate to the cause, because we all know that Autism Speaks is possibly the only big organization out there seeking to research what life is like for adults on the autism spectrum and what they can do to improve it, I'll life my donation website link: http://www.walknowforautism.org/baltimore/autisticspeaks.

If nothing else, you can keep tabs with me on how close I'm getting to that $250 goal. I know it's pretty modest compared to what some people do, but I'm trying to be oh-so-done-with the comparing thing. It just doesn't get me anywhere. I'm not some people. I'm Lydia, and $250 is plenty lofty a goal for me, here and now. So whether you care to donate or just get a little bit excited with me by leaving a comment, I'd be thrilled either way!

Tuesday, September 1, 2009

10 reasons to go away

1. It's too loud
2. I've just talked to several new people in a row
3. There are more than a few people in the room
4. There's a lot of motion in the room
5. I've been socializing for a while
6. I have to pay attention to where I'm walking
7. Fluorescent lights
8. My clothes are bothering my skin
9. I'm trying to talk to someone in a room with other talking going on
10. Someone invades my space

Where do I go? I go away to where the world is only sensory, reduced to hard and soft, rough and smooth, hot and cold. There, scratching my hands until they bleed or hitting my head on a concrete wall a hundred times over brings immense relief. Sometimes, I hide under the bed where darkness gives my tired eyes and ears a break. Other times, my weighted blanket allows my whole body to relax. Please don't try to engage me in conversation, because my words have been lost. All I care about is finding the right kind and amount of sensory stimulation to satisfy my over-taxed body and mind, in that moment. I can hear you, and if I try hard enough, I can understand, but it's no longer important to me. Just give me a break. Let me watch my fingers split the light in front of my eyes. Wait a while as I play with my Tangle toy (hey, I've seen you play with it too). Why don't you check your e-mail or make that phone call while I hide in the bathroom and hit my forehead with the back of my hand? It'll bring me back. I'll be back with you again. It might be a few minutes, or it might be a few hours, or it could even be longer than that. I'm sorry I can't tell. But just give me time, and I'll be talking again.