Movie?

First of all, thanks be to God, I am home.

Second, I have a dilemma.

My parents are going to see Avatar on New Years Eve. My options are either to go with them (and therefore get out of the house) or stay home, alone. It seems sad and almost ridiculous to choose to stay home alone, but hear me out. I'm scared of the aliens in Avatar, for one thing. For another, movies are hard. They're loud. If I go, I'll definitely be bringing my noise cancelling headphones. But then I'll look ridiculous, which believe it or not, I do care about, some days more than others. I could go to the movies and watch a different movie than my parents, so that's an option. Or maybe if someone has seen Avatar, you can tell me if the aliens turn out to be okay and not scary. They just freak me out. I get freaked out pretty easily, and something about them does it. Darn those aliens. I would like to go see the movie.

Help, please? Ideas? Suggestions? Thoughts? Comments? You get the idea.

Things to do

Thing to do when you've been in the hospital for 2 full weeks and get a 8-hour pass at home:

1. Eat Mexican food

2. Go to the toy store to get a painting book and silly putty to share with friends on the unit when you get back.

3. Go to the craft store to get a paint-by-numbers to occupy your time (cats, of course).

4. Come home. Hug kitty immediately. Do not put her down. She will purr excessively.

5. Eat a couple of Christmas candies, finally.

6. Paint your nails a pretty pinkish red shade to brighten your spirit

7. Open Christmas gifts with the family. Put on the pearl necklace from India and use the pretty lip gloss immediately. You will feel better.

8. Make a gingerbread house with your mom. It will collapse. That's okay.

9. Take a shower in your own shower. Shave your legs, finally.

10. Return to the hospital, rejuvenated. Refreshed. Ready for round 2, even if it turns out to be long. Hold onto you faith; you'll need it more than ever. You can do this.

Christmas from the hospital

It's a different sort of Christmas this year. There will still be presents, and my mom, but other than that, not much is the same. Unfortunatley, I'll be celebrating one of my favorite days of the year (up there with Easter and my birthday) from the hospital.

I don't know how I ended up here. It came literally out of the blue, and I felt horrible. You see, I missed a dose of my meds on Sunday morning. I take my meds morning and night. By Monday night, when my stepdad lost it and yelled at me, I couldn't hold it together anymore. I'd been either sleeping or crying for two full days at that point, and I was terrified because I didn't feel safe at home anymore. I knew I wasn't. I texted my therapist, and she told me to get to the ER. My mom took me, and they admitted me. Even now, I don't know where the horrible feelings came from. They're not gone yet, though.

One major point of contention that I have with autism is that it doesn't allow me to express myself well. I try to talk to these doctors and therapists here, and all I can give is one word answers that aren't very descriptive. "How do you feel today?" "The same. Bad." "Depressed?" "I don't know." "Sad?" "I don't know." "Anxious?" "I don't know." It makes it very hard to get the appropriate treatment when everyone has to guess what's going on inside my head. I wish I had something more profound to say on the subject, but I don't. It's just a tough situation that I wish weren't so.

From here, I'll go back to the partial program that I was in this summer. I'll probably be there for about a month. Now, here's some big news. From there, I'm not planning on going back to a job of any sort. The job hunt is called off. My mom and I totally agree that I'm not stable enough to try to work right now, that it would be unfair both to me and to an employer to expect that of me. So, I'm going to go to partial and do my autism research study and volunteer at the library. I'd also like to volunteer at the animal shelter with the cats. They have two big cat rooms that are set up like a bedroom and a kitchen, with 12 cats in each room. The cats look so happy. They need volunteers to hang out with and socialize the cats; I think I'd be perfect for that. It's just a little bit far away (30 minutes), so my mom would have to be okay with paying for the gas to get there.

Part of not working means applying for governmental cash assistance, otherwise known as welfare. I feel awfully stupid about that. I'm a capable young women; I should be able to work. But the fact is that right now, I can't. I can't deal with shoulds and woulds and what ifs. I have to deal with the facts. Leigh says that it's just a rough patch, that I'll be able to work again. The doctor here says that welfare gets a bad rap but that really, this is why it exists, for people and situations like me right now. It will be 18 months, at least, until they hear my case for SSI, so I can't wait for that. I guess I'll just have to go with the flow.

I should be coming home Monday. I'm still feeling pretty bad. I did have a little bit of a turning point when Leigh came to visit yesterday on her way from college to home, 5 hours away. It gave me a little energy that I hadn't had before. Still, I'm not sure if I'll be ready to leave on Monday or not. Time will tell.

Hope you're all still with me, since I've been gone. Don't worry. I'll be back.

From Leigh

Hi everyone! I was thinking, since Lydia's in the hospital and can't really update her blog like she'd like to, this might be a good time for me to jump in and talk about Lydia from someone else's perspective. Plus, I'm in the middle of finals, and this is a welcome study break! I'm Leigh, by the way. I think Lydia has mentioned me from time to time.

A little bit about me... I'm a Christian, I'm 21, I'm a senior at Lydia's alma mater, and I'm a psychology major. I'd love to someday work with autistic adults. I'm a Young Life leader, my favorite color is green, I love to travel (especially to Mexico), and I love German Shepherds. Oh, and I'm INFJ, according to Myers-Briggs. I think that about sums it up.

So you may think that the reason I became friends with Lydia is because I want to work with autistic adults. Actually, those things happened in reverse order. I have always been very interested in autism, but when I met Lydia, I wanted to be a marriage/family counselor. I have a knack for seeing through conflicts straight to the root of the problem.

My friendship with Lydia developed before she was even diagnosed with anything autism spectrum. When I was a sophomore and she was a junior, we both tried out for a spring dance/colorguard show. That's how I met her, technically, but we didn't really become friends until the following fall during band camp. One of the girls was unnecessarily mean to Lydia, and the injustice struck a nerve with me. Lydia and I chatted more and more, we started going to meals together... and the rest is history.

Anyways, I'd love to talk about some of the things I've learned from being friends with Lydia. The first one is patience. I truly believe that you can never be patient enough, and there are times when I struggle with it, but Lydia has helped be more patient than I was before I met her. Understanding something is not a prerequisite to having patience for it; frequently they go the other way around. If I got annoyed at everything anyone did that I didn't understand, I would be annoyed a lot! So instead of responding with frustration, I have learned to respond with curiosity. This of course extends far beyond hanging out with Lydia.

I've also learned not to make things more complicated than they are. 99% of the time with Lydia, if something is bothering her, it can be solved by cats. "Cats?" "Where's Elsie?" Apparently I've said these things often enough that she can now say them to herself and sometimes she doesn't need me at all! Sometimes I wish it was that simple for me too. Maybe simplicity is bliss?

Although she may not always agree with me, I see Lydia as capable of incredible things. She's already making a difference in the autism world just through this blog! She's got a teacher-like quality that helps her make confusing things really clear, and there is a job out there that really needs that skill. We just have to find it.

I'd like to make a disclaimer of sorts. Sometimes I feel like when Lydia writes about me on here, it makes me look like some kind of saint. Really, I'm no saint. I've figured out some things that are helpful, but it was only after trying a lot of things that WEREN'T helpful. Trial and error, trial and error, trial and... success! I guess I've just gotten lucky sometimes. It's also lucky that I have an awesome cat whom I think Lydia misses more than she misses me!

Lydia has been bugging me for months now to write about "how do I do it" for someone's blog. I've tried to write stuff, but it just ends up being trial and error, listening, and patience. But really, that's it. How do I write a whole blog about that? ...maybe I just have. hm. Anyway, I've never written for a blog that people actually read before, so I'm not sure I've inspired questions. But if I have, feel free to ask!

Merry, merry Christmas!

Leigh

Hospital

Just letting you know that I haven't forgotten about you. I'm in the psych hospital (again) and will be for the next week or two. Everything's okay. Nothing to worry about now.

Let you know when I'm back :)

Dilemma: the solution

My computer is at the doctor's office (AKA, my dad's) with a virus. Dad will fix it up and get it back to me in a day or so, but until then, I come to you from the guest that is Mom's computer.

Now, just gotta type fast before anyone catches me on it!

I've thought long and hard about whether to disclose my autism or not in my job interview, and I've come to a decision. Given that it feels right at the time (and it may not; it didn't at my last interview), I am going to be upfront about it. The main reason is that if I'm working for a company who would not hire me simply because of my autism, then that's not a company I want to work for. It's a bad sign if people are going to treat me negatively for that reason alone. I understand that it happens, and not infrequently, out in the "real world." At the same time, this is an organization that specifically works with children and adults with developmental disabilities. If they do not see the true worth of people with such disabilities, then I don't want to work for them.

I am a loving daughter, adoring sister, and good friend. I am valued in spite of and also because of my autism. I want to carry that into all aspects of my life, work included. Wish me luck.

Dilemma

I'm on the job search again. The job I was supposed to take starting in January... our friend keeps not getting back to us. She was supposed to take me out a few times last week and she never called. I need a job. So, it's back to the job hunt.

Most jobs are ones that you would take because it's a job and you need work. Then there are jobs that you actually want. I decided to stretch myself a little bit and apply for TSS (therapeutic support staff for kids) positions. I would still only be able to work part time. I got a call back for an interview the other day. That's a good sign, at least. I'd love to work one-on-one with a child with autism. I might be good at it. After all, my degree prepared me to work with children.

Now here's the dilemma. Do I tell the interviewers that I have autism? On the one hand, I think that having autism will make me a better TSS for children with special needs. It will explain why I understand them better than the average person. Also, I'm tempted to come out and say it because I don't tend to interview very well, and it explains that. On the other hand, do I want to be so forthcoming about my supposed disability? I'm not sure if they would look at me differently or not. They shouldn't, being that this organization is all about people with disabilities; they should get it. But, there's no guaranteeing that they will.

So what would you do?

Birthday and surgery

Tomorrow is my birthday. I'll be 22. Every time I say it, my mom says, "Oh, to be 22 again." Well, shucks, I don't think it's all that great. I'd rather be older, or younger, or anything. I'm so stuck in the middle of childhood and adulthood right now (perhaps like most people are at 17 or 18) that I don't know what I am. I'd rather not be 22.

My first birthday present was that I had my surgery today. I am oh-so-gingerly sitting on the edge of my computer desk chair, listening to Mom say, "DO NOT bend! Stop! Do not bend over!" But I want to pet the cat, of course. This will be interesting. Every time I want to hold Elsie, Mom has to pick her up for me. I hold Elsie a lot.

I was supposed to go over to my dad's tonight, but that got rescheduled to Thursday because of the surgery. We'll have chocolate peanut butter ice cream and I'll hang out with my baby sisters, who are 7 and 8. They're the sweetest kids in the entire world. My pride and joy, truly. I can't wait to celebrate my birthday with them, because any time spent with them is fun.

Tomorrow night, my aunt and uncle are coming and we're all having cake and ice cream. I'm excited to visit with my favorite aunt and uncle. They're just really good-hearted people. Mom got me a gluten free birthday cake. It smells better than anything I've ever smelled in my entire life, and I'm not kidding you. It's also beautiful. Here, see for yourself. Pretty, huh? It's yellow cake with chocolate icing. Mmm, GF birthday cake!

Then, Friday, Leigh, Jen, and Megan are driving down. My parents will be out until 2 A.M., so we'll have the house to ourselves. First, we're going to go meet Justin for dinner so that Justin can meet everyone, as he wants to do. For the record, Justin and I are not dating. It was my decision. I just wasn't ready. But, we're still good friends, and it'll be good for him to meet Leigh, especially. Then, we'll come back here and watch a movie and hang out. I can't wait for Jen and Megan to meet the one and only Elsie Penelope! I'll still be sore and unable to drive from my surgery, so friends will be a huge pick-me-up. Leigh is sleeping over and coming to to a therapy appointment with me in the morning. I'd say every other time I go, either Mom or Leigh is with me. I have a lot of trouble with the conversation part of therapy, and sometimes I don't accurately explain things the way I want to, and other times, I don't remember the therapist's response. It's hard. So, it's really helpful to have someone I trust come with me. Leigh is great at it, and I don't think she realizes how much I appreciate when she comes.

Sunday I have a discussion group with my autism group. I'm going to bake cookies because, of course, it was my birthday and everyone should get something out of that!

So that's my birthday week. I think you can agree that, even with the surgery, it's pretty much perfect. I know Elsie and I are excited!

Wish it luck

Mr. -----------, (VP of Student Life)

I am a 2009 graduate of ------ College. Just before my last semester at -------, my lifetime of differences was explained when I was diagnosed with autism. Autism is a neurological disorder with three main symptoms: social deficits, speech or language issues, and repetitive behaviors. Though I am a very capable student, I struggled terribly while I was living in the dorms; I was unable to regulate myself to sleep and eat on schedule and felt so socially overwhelmed that I frequently missed classes. My years of struggle culminated in my student teaching semester, which I had to drop after just several weeks due to an inability to keep up socially, emotionally, and organizationally. Being around people for so many hours a day was simply more than I could bear. I am grateful that my professors organized an alternative assignment for me, but they did not consider the fact that my autism was the reason I could not function as a student teacher. They were, frankly, clueless about how to handle such a situation. This is the reason spurring me to write to you. I want something better for future students of the College.

Consider ---------- College’s mission to “provide a high-quality education in a thoroughly Christian environment at an affordable cost.”

First, the College provides nothing but the best when it comes to quality academics. However, ----------- also has a very homogenous student body, barely reflective of what students will encounter in the real world after graduation. Students must be able to work with others who are not like themselves. At this point, students with disabilities may not feel comfortable applying to a college they do not feel is adequately prepared to serve them. If ---------- were more prepared to handle students with disabilities, more such students would consider --------in their college choices. Westminster, a college much like --------- but one with an Office of Disability Services, serves 85 students with disabilities on its campus. If it were better prepared to serve this population, I believe that the College would see an increase in the number of students with disabilities who apply. More diversity on campus will better prepare students for life outside the bubble.

Secondly, -------- seeks to provide an “authentically Christian” atmosphere in which students can learn and grow. Those in leadership hold those positions for a reason and must set the standard for the rest of the College by following the example Jesus set for us. In Mark 2, when Jesus heals a paralytic lowered through the roof of a house, we see that Jesus made a way for the man to access him when others would not. Similarly, we should allow students with disabilities access to a quality, Christian education. In John 9, Jesus was asked about a man born blind, and whether it was his mother’s fault or his father’s. Jesus responded that it was no one’s fault, but that God would be glorified through the man. Students with disabilities may be impaired in some ways, but they are also gifted in ways that glorify God and would be an asset to the campus. Finally, in a world that shows by example of abortion that prenatal children who may be disabled are disposable, we must send the message that they, most certainly, are not, and that we welcome them on our campus in every way.

You may say that we have a system in place for students with disabilities. From my own experience, allow me to explain the problems the current system presents. First, no one knows what it is. Professors are unsure of what to do when a student discloses a disability. In my own experience, their reaction was to keep it quiet; I was asked not to tell my department chair. Similarly, the counseling center does not refer students to speak to the correct person on campus about a disability. In my time at ---------, I was unaware that any help could be offered me and, by the reactions of my professors and the counseling center, they were unsure what to do and even uncomfortable with the situation. When a student meets with a professor about a disability that is affecting performance in class, it is terrifying. Professors are in a place of authority, and the student feels as if he or she has to acquiesce to whatever the professors say. By providing a disability counselor on campus, the student would have an informed an advocate when speaking to professors who may make decisions with which the student does not agree.

By providing a disability counselor on campus, the College could solve these problems. Students with disabilities would feel more comfortable applying to ----------, and the diversity on campus would increase. All students would benefit from this increase as it would better prepare them for life after graduation. As a college that seeks to be “authentically Christian,” ----------- should send the message to its students and the world that it accepts all who are seek such an education and are academically capable. Jesus gave us the example to follow. The current system for assisting students with disabilities is inadequate, as professors and students alike are unaware that any system is in place. Students would benefit by having a liaison between themselves and professors, whose authority can make them difficult to approach. Students with disabilities deserve the same access to a “high-quality education in a thoroughly Christian environment at an affordable cost” that all other students have. Please consider allowing students access to a disability counselor on campus.

Words

I was made to be familiar with computers from an early age. I've been going on the internet since second grade, and I first started to use AOL Instant Messenger (AIM) in fourth grade. That was also the year I learned to type. By fifth grade I could type 80 wpm. I took to AIM like a duck takes to water. Looking back, it all makes sense.

Although I didn't have a speech delay, I've always had trouble with language. To be honest, I just don't sound like a very intelligent person when I speak. I'm not sure what it is. People have asked me (and I've noticed the surprise on their faces), "You mean, you went to college?" Yes, I did. I've only learned to express feelings within the past year or so. Before then, I just never talked about how I felt. My parents did notice that, but it wasn't exactly something they were going to take to the doctor, not knowing about autism. My mom says I've never been that great at conversations, either. Before I started taking Topamax for my migraines, I always tended to have one-sided conversations, she says. Now, on the Topamax, you're lucky to get a word or two response out of me. I have a habit of repeating what other people say, too, when I'm excited about it. I wish I didn't do that, but I can't seem to help it. Sometimes, when I'm stressed, I get repetitive, and say the same thing over and over again. So, speech delay aside, I've always had some problems with language.

As soon as I started to use AIM, I noticed that I could say more when I was typing. It was like, instead of having x words at my disposal, I suddenly had 10x words. My parents were surprised at how well I wrote from an early age; I think what's surprising to people is the disparity between my speaking ability and writing ability. When I talk, it's like the words float around in my head and I have to peg them down to say them. I have to peg down each word to be able to say it. When I can't focus enough to peg down the words, I lose the ability to speak at all. That's what I call "losing my words." But when typing, typing the word pegs it down. I can refer back to it and go after the next word. When I've lost my words, sometimes I'm a little slower to type than I otherwise would be as I try to pick the words, but I can still do it. So far, I've never not been able to type.

So, I love to use email and online chat programs. If I need to talk to a friend, I frequently text them "Facebook?" or "Skype?" and ask them to get on so that we can talk. I almost never (though it does happen, rarely) choose to talk on the phone. I can't get my thoughts out that way.

If you have a child with autism, I highly recommend trying to teach him or her to type. You don't know what might be going on inside that mind!

Who we are and what we do

I'm learning something lately. There's a big difference between who we are and what we do. Who we are, the very essence of our being, may or may not be accuratelyl reflected by our behaviors. Who we are is something unchanging and unchangeable. What we do changes from day to do, and we can change it. No matter how much we change what we do, though, we will never, ever change who we are.

This whole issue of getting a disability counselor at my college, for instance. My college receives no federal funding whatsoever. This means that it does not have to follow certain legal restrictions that it would have to follow if it did receive federal funding. That's why it doesn't take the funding... so that it can do what it wants. Why a place that advertises itself as being "authentically Christian" would fail to provide assistance for those with disabilities is beyond me. This isn't the government pushing them to do something they consider immoral... this is is moral as it gets. But I digress; as far as the law is concerned, my college can push around people who are of a different age, gender, religion, sexual identity, or, yes, disability. They can choose to hire only "authentically Christian" faculty. They can kick a student off campus for having premarital sex or engaging in producing homosexual adult films (which happened last year). And, yes, they can quietly shove it under the rug when a student like myself has issues. They don't have to deal with them; they can simply make them go away.

Here's the issue I have with that. You can argue that it's wrong to choose one faculty over another due to religion or to remove a student from campus for having sex. In fact, I won't even say it's not, because I don't want to get into that right now. But when you sign on at that institution, as faculty, you give your Christian testimony and sign your name to it. You say, for all to see, I am a Christian. When you become a student of the school, you sign your name to a code of conduct, which includes not having premarital sex while you are a student there. You choose to put your name on that paper. No one forces you to do it. I did not choose to have autism. And I sure as all get out never signed my name to a paper saying that I would not have it. That would be ridiculous. I think we can all agree on that. As long as you are affiliated with that institution and have your signiture on such a paper, doing things like flaunting your non-Christian religion as a faculty member or producing adult films as a student constitute making poor choices. Again, I'm not argueing that those choices are otherwise poor or not, because it's not the time or place to get into that... but as long as your name is on that paper, you should expect repercussions for breaking that contract. What contract did I break by being autistic, other than perhaps the unspoken one with the school that I would be perfect?

Who we are is not our behaviors. Behaviors can be changed. Justin and I had a conversation the other night about our autism showing. You see, his autism shows to the outside world more than mine does. To be specific, he rocks and hums to himself almost constantly. It's not annoying, but it's obvious. If you talk to me briefly, on a good day, I can pass for non-autistic (though I still don't have that whole eye contact thing down...). Justin, to put it bluntly, could not. According to him, he's learned not to care what people think about him. But, he still has to put up with frustrating situations. He volunteers for a group that takes clients with mental retardation on outings, and recently, another staff on the trip mistook him for a client. He wants to become a manager in his field of social work, which will require a lot of interaction with other people. These are some of the reasons that he wants to make his autism less noticeable. Because regardless of how much you don't care what people think, it still hurts when people misjudge your intelligence so greatly. Because no matter how much you don't care, sometimes what people think affects you, like in getting a job. Justin and I talked about ways to work on curbing his rocking and humming in public. I explained how I do it, because I tend to rock in public too. You basically have to be hyperaware about it. Pick a half hour chunk of time, and for that half hour, ask yourself almost constantly, "Am I rocking?" Gradually lengthen the amount of time you're paying attention, and it does get easier. The second you notice you're doing it, stop.

Does it sound exhausting? Because it is. It's exhausting and it's frustrating, because sometimes it feels like you'll never be able to stop. Some days are easier than others. I'm not saying my method is without fail; it certainly takes a lot of time to be able to last a whole day without the behavior.

Justin's concern was that he didn't want to change who he is. I reassured him: changing behaviors does not change who you are. They are just behaviors. They are what you do.

So let's get this straight.

Thing I do: flap my hands, hold my ears, get easily distracted, repeat myself, refuse to talk on the phone, sometimes hurt myself, get extremely anxious

Things I am: autistic.

Got it? I thought so.

What if?

I went to a small, Christian college and graduated in 3 1/2 years. I wish that I could say my college experience was a dream come true, but it wasn't. It was hard. I struggled a lot, not academically, but with the day-to-day aspects of living in the dorms. I couldn't stay organized. I couldn't manage to take my medications regularly. I struggled to eat and sleep with any regularity. I was so overwhelmed with all the social interaction of daily life that I often avoided the cafeterias and refused to go to any fun events on the weekends. In fact, sometimes I got so overwhelmed that I missed classes and just completely fell apart. I'd hide in my room, in the dark, for several days. I had trouble interacting with certain professors, who I just rubbed the wrong way somehow, and received more than one nasty email. One professor called me, via email, "the rudest, most disgusting individual with whom I've ever hd contact." No, college was no dream.

I got my ASD diagnosis right around my 21st birthday. Leigh and I had known since that fall that that's what it was, but then, it was official. I contacted the counseling center on campus, who said that no one there was familiar with HFA or Asperger's and that they really couldn't help me, but that they wished me luck. That was right after Christmas. I knew by then that maybe I shouldn't try to student teach. I knew then that I wasn't just like everyone else... I finally had a reason for why I struggled in all the ways that I did each day. I wasn't even sure that I wanted to student teach. I talked to my on-campus supervisor about my recent diagnosis and what it meant, practically. I was nervous that my co-op would take me the wrong way, as several professors had done in the past. You see, I'm so bad at what I call being fake that I get myself into trouble. I guess sometimes you have to be fake, and student teaching is one of those times. My supervisor told me that she understood, that she would work closely with me. She did not want me to disclose my autism to my co-op teacher, however, nor to anyone else in the college education department. I still had to pretend to be normal.

I went on to student teach anyway, and I fell apart. My world become hell. It was far too abrupt of a transition for me. My irregular sleeping, eating, and medication taking was a big part of the problem. I had so much work to do that I never had time to sleep anymore, and I couldn't live like that. I started to get migraines all the time (and I do mean all the time), which caused me to hit myself and bang my head on the walls frequently. I had several ER trips due to the severity of the migraines. I missed my first, and then my second day of student teaching, when the migraines got so bad I was throwing up all night. How was I supposd to go in like that? It was at that point that my supervisor spoke with my co-op and the head of the education department. Even though the root of the problem was that I was being over-socialized, she still did not disclose that I had autism. Together, as a group, they all decided that I should stop student teaching. I was too grateful to be angry. I just wanted out at that point.

I spent the semester working fewer hours (3 full days and 2 mornings) in the on-campus pre-school. I disclosed my autism to the director. I still got in trouble for something I couldn't have helped once, which I didn't think was fair, but she got over it quickly and so did I.

Here's the problem: I had to take a letter grade of D in all 14 credits of student teaching. That was a huge blow. I still graduated Magna Cum Laude, but I would have graduated Summa if not for the Ds. Those Ds hurt, because I knew that I had truly tried my best. They were not what I had earned through my semester of hard work; they were arbitrary.

Now here is my question. What if my campus had had a disability counselor? What if I hadn't had to take those Ds? What if my college had been able to make accommodations for me in student teaching, and I had been able to succeed? What if?

I was talking to a friend online earlier today, and she brought up a good point. What if? What if I'm the one to make that point to the college? What if I find a way to speak with a disability counselor on another campus and find out how they can help my campus? What if I'm the impetus needed to get the ball rolling?

What if the next person doesn't have to go through what I went through? What if someone says, "What about student teaching?" to them years, not weeks, before they're to start? What if someone makes accommodations for them? What if they succeed, and show the college and the world that people with autism can make fantastic teachers?

What if?

The price I pay

In the world of autism, so much is controversial. If you go trying to address questions like what causes it, how best to treat it at any given age, or whether to use medications, you're going to hear people shouting from either side of the fence. I try to stay away from the controversial stuff on here, because I don't want to go dividing anyone, but today, I'm going to breach one of the above topics. So, here we go, on why I use daily psych meds.

I have anxiety. Not just the kind that makes me worry and ask the same reassurance questions seven times, either. The kind that hits physically, that makes me feel like I just got startled half to death, all the time. It makes me feel like I'm going to through up. Okay, I have the other kind too... I'll ask you over and over again the same question, because I'm afraid it's not still true. I worry obsessively about certain things. About my cat. About my surgery. About Leigh going to Mexico, is the big one right now. I've had this anxiety since I can remember, although I never knew what to call it. I knew that when I went out too much, I didn't feel good afterward and needed to stay home and stay quiet for a while. I thought that I was crazy for being that way, and that I was surely just like everyone else, that it was all in my head, so I pushed and pushed myself until I missed days of school at a time because it was just too much socialization, causing anxiety. Starting in second or third grade, I started to miss school like that. I got overwhelmed. I was first put on meds for the first time after having to leave my freshman year of college because my anxiety had gotten so bad that I was having one panic attack after another. I was at the end of my rope and didn't know what to do. My mom came and got me, and I took the semester off while I got settled. I've been on meds ever since.

I started with just SSRIs. I was on Prozac until a year or so ago when my mom said she thought it wasn't working as well as it good. She asked my psychiatrist, who at the time was an idiot, to put me on Paxil since it worked really well for a number of other people in my family. Buspar was also added for the anxiety, at a very low dose, which helped me. I did better on Paxil, but I slowly but surely gained weight. AWe switched psychiatrists last Spring, to someone who specialized in ASDs. This doctor was cold and uncaring, barely able to carry on a conversation. She took me off Paxil and put me on Celexa. I went through withdrawal and chaos ensued. That's what let to my hospitalization from July 9th-17th of this year. While I was in the hospital, they increased the dose of Celexa a bit to 20mg and increased the Buspar to 30mg twice a day. That's a high dose of Buspar, but I needed it, and it works for me.

Upon leaving the hospital, I learned a new word: frustrated. Once I realized what "frustrated" felt like, I realized that I felt this way much of the time. The doctor in partial did a novel thing, too. He listened to me, finally, for the first time. He put me on a brand new medication: Geodon. Geodon is an atypical antipsychotic that is used in bipolar and schizophrenia patients at higher doses, but in low doses it works well to curb frustration and ups and downs in people with ASDs. Although it raises my blood sugar (I'm type I diabetic, by the by), this medication has changed my life. I can stop and say, "I'm frustrated." I can use my words instead of hurting myself to say that something is wrong. The dose has slowly gone up and up to get to a more therapeutic level, and we're now settled on 60mg twice a day.

The price I pay for this even keeledness is sheer exhaustion. I sleep 12-15 hours a day. If I wake up at night after 10-11 hours of sleep, I'm like you might be on 4. I am exhausted. Luckily I don't have to do much right now, but to do anything in the morning is awful. My mom has to drive to early doctors' appointments because I'm just so tired. By early, I mean before noon. It's very easy for me to get overly dependent on caffeine, too, because that keeps me going so well. It does help to eat regularly and enough, which I tend to let go by the wayside. Sticking to a minimum-acceptable calorie level gives me more energy than I would otherwise have, but it's still tough not to turn to that one extra Diet Coke. Mom keeps me on the straight and narrow though; I get 2 12-packs a week. One caffeinated, one not, and that has to last me. That gives me 2 caffeinated beverages per day, which should be enough. It's tough.

So that's my story. I pay a price for the peace, but to me, it's worth it. My life has been in turmoil for 21 years. Finally, for the first time, I am at peace. The difference between wanting to hit your head or tear at your skin and being able to say, "I'm really frustrated. I want to hurt." is so important that I'll deal with whatever I have to deal with to get the better side of that. Exhaustion or not, it's worth it.

Blessed x 10

I thought I'd take the opportunity, it being Thanksgiving on this side of the pond and all, to tell you all some of the things that I'm thankful for. Maybe I'll surprise you. Probably not. So, here we go, with 10 things to be thankful for:

1. Cats

2. Elsie, specifically

3. health insurance

4. my mom

5. Leigh

6. new friends and old friends

7. the OVR for my medical transcription courses

8. my good doctors

9. Diet Coke

10. texting

I can think of more things that I'm thankful for, too, but those are the first ten that came to mind. I'm not going to go trying to prioritize and make one more important than another, because that's too hard. I couldn't pick a "most important 10 things." I went to Justin's for Thanksgiving today and enjoyed spending time with his family. I got to meet his grandma's five cats, each of whom was sweet as can be. Tomorrow, we'll celebrate here with my sister, her fiance, Justin, and my parents. Later, after we've all eaten, my aunts and uncles will come over to spend time together since this is the first Thanksgiving without my grandma, and it's hard on everyone. Even without her here, I'm thankful for the 21 years I got with my Daw. She was truly one of the most unique, special people I've ever known. I'm grateful to be her granddaughter.

This year has been a hard one. I've gone through so many changes, graduating from college and leaving what had become my "normal." I've been through a hospitalization and another near one. I've struggled to get and stay healthy. I've dealt with uproar with my medications and adjusting and readjusting to changes in those. I started a new job and got used to going to work, only to end up out of work temporarily and not know what's ahead. I'm facing a surgery that scaring me. Hard year or not, I've been so blessed by the good things in life. God and my family are taking care of me, and with both of them on my side, I know I'll be okay.

Big news!

My Medicaid is open today! Praise the Lord!

I was about the lose my health insurance as of December 1st, and I need surgery, so I was really getting scared. But God came through and brought me health insurance! I'm okay!

Next order of prayer business, if you have a moment: I need to get through until January with no job. I was supposed to start a job in the beginning of December, but there's no point in starting it just to have to take off because of the surgery for a few weeks. So, I'm not going to start in December. I'm going to wait until January. Mom is going to call the family friend I was going to work for and see if she'll still have work for me in January. If not, I'll have to go on a job search again. I hate job searching. I'm hoping and praying that the job is still available in the beginning of January. Would you hope and pray too, please?

Ugh. Again.

The anxiety monster is coming out again. I know, I know-- again.

Here's the problem. I'm having surgery on my cyst in a few weeks. (In case you want the update, here it is: It's being slow to heal, so I'm back on antibiotics for another week. I go back to the surgeon for another check in 2 weeks and to schedule surgery.) I'm worried about the pain after the surgery. I'm also worried because I was originally supposed to transition from my photo lab job to new job right away. Well, it turned out that the manager didn't have work for me until the beginning of the December. Now, with the surgery, I have to wait until after Christmas to work again. I'm worried about the money. I'm losing my health insurance as of December, and Medical Assistance hasn't picked me up yet. I'm worried about needing surgery and not having health insurance. There's a lot to worry about.

Every time I worry about one thing, the fact that Leigh is going to Mexico next year hooks onto that and I worry about that. I worry about that a lot. We'll have email a few times a week, but it'll be different. We won't have texting, which I've gotten so used to, and I won't see her very much. I just don't like her being away. I even get weird when she's home instead of at school. I just really don't like change. Although, I need to share Leigh with all the Mexican orphans who need her too. I know that. I think I need to talk to my therapist about it, though, because it's starting to get to be a lot anxiety to deal with. I'm starting to randomly cry a lot, which isn't like me at all.

The good news is that, factually, things are actually in a pretty good situation for when Leigh leaves. I realized that I needed to make some other friends, so I started working on that over the summer. Unfortunately, I'm not the greatest friend maker, and I needed a little help. Leigh talked to two girls that she's friends with and I knew but not extremely well but wouldn't mind getting to know better. She asked if they might consider intentionally getting closer to me in the next months before she leaves. They could spend some time with the two of us and learn a little bit about how I work, what works, what doesn't... some of the things Leigh has learned on her own. So, in the past few months, I've talked to Megan and Heather more. Megan is great at e-mailing with me and always, always remembers that a cat will solve almost anything. She's Leigh's suitemate, so I see her frequently enough when I go up there. I'm really comfortable around her. Heather has always let me just be myself and been more than okay with that, and she's great about texting and helping me hang in there through anxious times. Nobody will ever be Leigh (we wouldn't want another Leigh walking around here anyway...), but it's good to have other friends and be comfortable with them.

So, like I said, things are looking good, objectively. It's just somewhere in my mind that I'm still all in a panic about it. I'm going to go find my cat.

Texting: AKA, meltdown avoidance

I think whoever invented texting must have had me, or at least people like me, in mind. Oh, so you need a socially acceptable way to escape from a situation and connect to someone miles away from you? Here you go! Cumbersome though I thought it was at first, over the past year or so, I've really gotten used to it. It's become one of my top few meltdown-avoidance tools, right up there with cats and Magic Words.

I text when I'm stressed and want out. When it's loud, when I'm upset, when I'm overwhelmed, when I'm inevitably melting for whatever reason, I text. Usually, that person is Leigh. Sometimes I know she's busy and try for someone else, but it helps if that person understands how I use texting. The point of the conversation, for the most part, is the conversation. Sometimes we talk about what's upsetting me or how to fix whatever is going on, but the most important thing is that as long as I'm texting, I'm not losing it. I'm focusing on something else.

It happened in the car just tonight. Justin and I met up with two other couples to walk around downtown for Light Up Night. I'm still pretty sore from my cyst, and I wasn't sure if I wanted to go. The jury's still out, and probably forever will be so, on whether or not it was a good idea. I'm glad I got to see the fireworks with my new headphones, but I was sore and a little cranky the whole time, and my bandage worked its way off (I can't fix it myself... need Mom for that). By the time we got into the car to leave and the parking garage wasn't. going. anywhere., I started to get frustrated. "Leigh's going to Mexico for a year" picked up on that little bit of frustration and soreness, and it was enough that I wanted to cry in the car. I was, objectively, perfectly fine, but I was starting to melt, and I knew it. I didn't want to do that with Justin in the car...

So, I whipped out my phone. Leigh didn't answer pretty quickly and I was getting tears in my eyes, so I saw if Emily was around, and she was watching a movie with friends and asked if I needed to text for a bit. We talked about autism, about dealing with people with autism, about blatantly autistic behaviors and dealing with those, we talked about cats, we talked about ice cream, about "Leigh's going to Mexico for a year, about the fact that I don't have to worry about that yet, we talked about are you sure I don't have to worry about that yet?, and, finally, I made it home in one piece. Sometimes, even just holding my phone calms me down.

Other times that I've gotten out of meltdowns by texting include:
Disney World's fireworks
the mall
many, many restaurants
city crowds
storms at home
grocery store with Mom
sitting 2 feet away from Leigh but not having any words to verbally tell her what's wrong

My phone is a beautiful thing. Sometimes, I probably seem rude by texting when I should be "engaged," but you know... I've thought about that. I'm not engaged. At all. I'm barely holding it together. And if my options include 1. text or 2. meltdown... I'm going to pick appearing rude to my family or close friends over engagement. Anyone who matters, also understands (or will, now that I've thought this through and realize that I should explain it to them).

And yes, I hear you bugging me about those fireworks. You want to know how they went. Well, I held my phone the entire time, but other than that, they were absolutely beautiful. I could see some of those again.

I haven't forgotten about you...

I'll post within the next few days. This whole pain thing is wearing me down. But I haven't forgotten about you, I promise. I'll be back.

A wonderful, wonderful weekend

I went to hang out with Leigh this weekend at school. After the craziness that happened a few weeks ago, I was really missing her. She's a constant source of calm in the midst of any storm. It was so, so good just to hang out with her for the weekend. I can't think of anything in the world I'd rather have done.

My weekend was slightly clouded over by some pain. Warning that if you get grossed out extremely easily, you may not want to read this paragraph. I've always had to sit "just so" or I'd get a shooting pain in my tailbone. Well, that little spot got bigger and swollen and super painful. I went to the ER Thursday night, and it turned out to be a pilonidal cyst that had to be drained. That would have been fine (I just had to sit on a cushion for a few days and take Tylenol). I was getting better on Friday and for part of Saturday, but by Sunday I knew something was wrong. My marble-sized lump was the size of a golf ball and extremely painful. I went to the doctor today and got sent immediately to the surgeon. Only stop to pick up Percocet and antibiotics. The surgeon drained the cyst, which hurt like HECK this time (luckily, my mom stayed with me and that helped) and will have to be removed in a not-so-little surgery in a few weeks. I'm not thrilled, at all. I'm scared.

Anyway, aside from that little interlude, do you want to know what I did on my wonderful weekend with Leigh? I knew you did. I think I can remember it all! Well, when I got there, she was in class for a few hours and I hadn't slept due to the ER trip the night before, so I collapsed in her bed and slept. I got up and we went to the music store in town where the owner keeps three cats. I love these cats and have visited them many times in the past couple of years. We played with and pet the cats. Chaos, the big, fluffy kitty, was so thrilled to see me. I love that he still remembers me. Then we got Chinese food (mmm, beef and broccoli!) and took that back to the room to eat. Leigh had to go to a Young Life meeting, so I went to find us Dove Bars (the ice cream ones, since Leigh had never had one and they're heavenly) and hung out with another friend on campus. After that, we met up for the annual big dance show. The show was great. I had never gotten to go in all my years at school because I was so worn out from classes and being social all week that I couldn't handle doing things on weekends too... it felt really good to be able to go this year.

Saturday, I woke up early (8AM) because of the pain and stayed up. I messed around on my computer while I waited for everyone else to wake up. Then, we got ready and went out to a local Mexican restaurant with a mutual friend, Heather. She's the sweetest girl, and we had so much fun talking and laughing and eating good food. We stopped at Heather's on the way back to campus to see her two dogs. They're both chihuahuas. One is 15 lbs and one is a little, tiny, 3-lb puppy. After hanging out with Heather, we went to Leigh's friend Lee's (oh, yeah, that's fun) senior saxophone recital. He was really good. I only made it through the first half with the sitting, but what I saw was great. We just kind of hung around for the rest of Saturday. We found out that our good friend Jen got engaged that day, so that was exciting news! We planned to make her a poster the next day. We ran out to Walmart to get me Tylenol and Tylenol PM then, because I wasn't sleeping very well. I finally slept through the night that night.

I even woke up late the next morning, at 11:30. We went to Walmart again to get supplies for Jen's engagement poster. We made it about the TV show The Office and analogies, since Jen loves The Office and English. Leigh did most of the poster making while I laid on the couch. I slept on and off all afternoon, worn out from hurting for the past ten days. We went to church and I got up and down the whole time, and not always with the rest of the congregation. I love church, especially that church. After church, we went to Jen's to bring her poster and congratulate her. I'm SO excited about her engagement! Then, we stopped at Sheetz for a milkeshake to split (mmm, milkshake!).

We got back and I was really, really hurting. Even laying down wasn't relieving it anymore. I finally broke down and cried. Worried that I wouldn't be able to drive the next morning if I waited, I drove home at 10:30PM that night. It's just an hour's drive, but it was super dark. I was up most of the night again, crying, until my mom came and laid down with me. Given that that wouldn't do anything for the pain, it makes me think that I was as upset as I was hurting. Moms can fix everything, though, don't you know?

So, that was my wonderful weekend, pain aside. I couldn't have asked for a better time or a better friend. I wasn't positive I was going to go, but I'm so glad I did. It even included cats!

How to (narrowly) avoid a melt down

Some people think noon is pretty important. We base our day on "before noon" (aka morning) and "afternoon." We eat at noon. Noon is a big deal. Not in my world. In my world, it's all about the mail.

My day hinges upon the mail coming. I depend on the mail. I need the mail. It's an essential part of my routine each day. I wait for it to come starting at about 2PM, waiting by the front window, waiting, waiting, waiting... and inevitably, sometime before 4PM each day, the mail comes! I run out in my barefeet (unless there is snow on the ground) to get the mail the second the mail truck goes on to the next house, so I can avoid small talk with the mailman. There's never anything for me. My grandmother, who died in May, easily gets ten times more mail than I do. But I'm the first one to see what comes. I get to see who got what. I get to see if maybe, just maybe, I got something. I need the mail.

Yesterday, I was anxious for the mail to come. It was 4PM and it hadn't come yet. I thought I'd check out if the mail truck was down the street, so I put on some shoes and decided to take the trash cans back to where they belong after trash day. I didn't hear the mail truck. This was getting ridiculous, I thought. Then it occured to me. Veterans Day. No mail. I felt the anxiety building. No mail on Veterans Day. The mail isn't going to come. I headed back to the house, making my hands into fists. It's not coming. The mail isn't coming today, because it's Veterans Day. I almost started to cry. Why do we have to celebrate holidays by not having mail? That's a ridiculous way to celebrate. We need the mail. I need the mail.

Elsie greeted me with a paw and a squeak as I come back through the door. She was concerned that I was crying, sweet kitty that she is. She doesn't like when I cry. I knew that Leigh was busy, but I knew she'd tell me to find cats, so I picked Elsie up and fussed over her. I took her into the kitchen and give her a treat, just because I can. She loves her treats. I started to feel a little better. Elsie

In the time I spent with Elsie, something miraculous happened. UPS came and brought my noise cancelling headphones. You see, my boyfriend (yes, folks, it's official) and I are going to Light Up Night next week and there will be fireworks (and you know how I feel about fireworks: not good). The 'works themselve are beautiful; it's the noise that gets me. As an early birthday gift, Justin got me "extreme isolation" noise cancelling headphones so that he and I can enjoy the fireworks together. I know, I know, I found a good one, eh? Headphones plus earplugs, and I should be able to watch the fireworks without tears for the first time in my life!

Anyway, first good thing that happened was that my headphones came, and they work wonderfully. They block 25 decibels, and my earplugs block 29, so between the two fireworks should be brought from approximately 110 decibels to approximately 60, or the level of normal conversation. That's about what I can handle without getting agitated, so, we should be in business!

Next, my mom said that she would stop at the video vending machine outside of the grocery store and look for UP, the movie (I clarify because people kept asking "up what?"). Well, instead of renting it, Mom bought it! We never, ever buy movies, but now we own UP! I was so excited to watch it, and watch it we did!

After the distractions ended, I did start to get anxious again and talked to my friend Emily online. She understood that I was uncomfortable about the mail and didn't tell me that I was being stupid or anything like that, like it might be easy to do. I understand that it's just a small change of routine, but it's so hard to deal with. I like my days to be the same. Emily and I talked for a little bit, and then I went to bed.

Luckily, I woke up to a new day... a day with mail! Today will be a good day. I'll work on my medical transcription, work on my book, and this evening, I'm going to the mall with Justin and one of his MHMR clients. I'm excited to meet the client, as I'm thinking this could be a future career for me. I still don't like unexpected no-mail days, but maybe they're not all bad. At least they're over pretty quickly and onto something else! It will pass. It always passes.

Why my cat has autism

I had to get up at the crack of dawn this morning (7am) to take Elsie to the vet with my mom. She has to get steroid shots every few weeks to keep her muscle-wasting, which causes her throwing up, under control. So off to the vet we went. On this brief trip to the vet, I discovered something huge. My cat is autistic. It's no wonder we get along so well.

It came to me when we were in the car. Elsie is afraid of the cat carrier (it took her to the vet once, after all), so we take her in her harness and pretty pink leash. She didn't want to be held to get the harness on, so I gave her a treat right after she got it on and that made her feel better. I planned to give her another treat in the car, to let her know what a good girl she was being, but... I couldn't engage her. She was so involved in looking out the windows that I couldn't engage her, couldn't get her eye contact, even to give her a treat. This has happened when I took her outside on her harness and leash, too. You can't get her eyes to look at your eyes. She's in her own kitty world. The lack of engagement and lack of eye contact is what made me realize wow, Elsie is acting like she has autism.

We got to the vet and she absolutely hated the noise of the cars outside. Kitties have super-sensitive hearing, of course, and our vet is on a busy street. The cars passing outside were so distracting to her that she didn't even feel it when she got the shot. Hmm, sensory integration issues?


Then there's the issue of her food. Elsie is o.b.s.e.s.s.e.d. with eating. Obsessed. It's all she thinks about, I swear. She starts meowing for dinner around 2:30 in the afternoon, and she doesn't eat until 5! She'll do anything to get you to feed her. That's her number one goal. Elsie loves food more than I love cats, I think!

Did you ever think a cat could have echolalia? Mine does! Sometimes she has conversations with you, but other times, she just repeats what you say (by meowing in the same tone that you speak to her in). "Elsie?" "Me-ow?" "What's up kitty?" "Me-ow meow." You get the idea. She's got it down pat. Kitty echolalia.

There's a book out there called All Cats Have Asperger's Syndrome. My first diagnosis was Asperger's, and when I got my diagnosis, I got this book. My mom said that the author must have known that I was out there somewhere. If you know someone with Asperger's who loves cats, this book is adorable. And so true!

Elsie recovered just fine from the shot she never felt :)

About blogging

It took me a while to get this up here (it often takes me a while to get anything done... I get distracted rather easily), but one of my readers gave me this blog award. I thought it was pretty and that I would put it up, even if I don't read enough other people's blogs to know who to pass it onto. I guess I'm kind of messing up the game, but that's okay. I never did play games the right way. Why should I change now?

I've come to really, really like blogging. It gives me a chance to put things in writing before I have to talk about them, which makes them easier to talk about. It gives me a way to say, "well, did you read my blog post?" instead of having to tell the same story or explain the same thing to multiple people, since I wear out really quickly from telling and explaining. It allows people to know what's going on in my life. It's an outlet for when I need to write but don't have a place or purpose for writing. And, I hope, it has allowed you to learn a little bit of what it's like to live with autism. That's my goal. That's why I started this thing.

So thank you, Annicles, for the award, and thank you everyone, for being along for the ride with me. Now get those seatbelts back on! We're not finished yet!

Life with a communication disorder

I say: Speaking is hard for me. Writing is easier.
I write: When I speak, it's kind of like walking around in a dark room with a flashlight. I have limited ability to see any obstacles in my way, but I get tripped up a lot and run into things that cause problems. When I write, though, it's as if someone has turned the overhead lights on, and I can clearly see the layout of the room and any potential issues.


I say: Boil it. On the stove. Not for 3 minutes, more than that.
I write: I don't know how to hard boil an egg, but I know how to soft boil one and I assume the process is similar. First, set the eggs in a pot of water. Turn the water on high and wait for it to boil. If you're soft boiling, when the water boils, set the timer for 3 minutes. When the 3 minutes is up, turn the heat off and douse the eggs in cold water until they're cool enough to touch. For hard boiled eggs, I assume you just boil them longer than 3 minutes; I just don't know how long.


I say: I like cats.
I write: I love cats because they're so calming and centering. The sound of their purrs and feel of their furr offer a sensory experience. They allow me to engage in a way that I can't with people, in a way that doesn't require words. Cats allow me to reregulating myself, every time I see one.

I say: Does it make sense?
I write: Do you better understand now what it's like to live with a communication disability? To have so much in your head and just not be able to get it out? To be so overwhelmed by the sensory world that you can't get past it to compose your words in speech? To have people treat you like you're unintelligent, because you don't speak like a very intelligent person? Will you keep this in mind then next time you're talking to someone with autism?

A Happy Halloween

I went out with my HFA/AS (high-functioning autism/Asperger's Syndrome... I hate when I can't pick up on people's abbreviations, so I try to redefine each post for those who may not know). Do you want to hear about what we did? Oh, great! I'm so glad you want to know! That's just what I wanted to tell you!

First, I had a therapy appointment bright and early that morning with my mom at 9 A.M. You can read my previous post to see a bit of what went down there. After that, we had to stop at the store to pick up Halloween candy for the trick or treaters. I made sure to get some without peanuts. Now that I have to watch with food intolerances, I'm much more aware of the many kids out there who can't eat peanuts. So, we got Milky Ways along with our Butterfingers.

We got home, and Mark and his mom Carol had beat us here. Mark has been in the group since it started 2 years ago. Mark draws cities from all over the place; they're big, like 12" x 40" or something. He has them shrunken down to postcard size and keeps them in a photo album. He brought them to show me, and they're really pretty. They live kind of far away and his mom isn't as familiar with around here as my mom is, so they met at my house and we took them to the event. It wasn't very far away at all (I was surprised). We went bowling! I bowled once in college when I had a torn ligament in my right hand, so I had to bowl left-handed. Before that, it had been since pre-school. I bowled in the 80s left-handed, so I thought I might be okay. Well, not so much. Bowling-wise, the day was a disaster. My first game was in the 80s, but my bad ligament thumb started to hurt, and my second game, I scored a 25!

That's okay though, because we hardly even cared about the scores, except to laugh at them. The bowling alley was noisy, so I spent a decent amount of time just hanging out by myself and not talking to anyone. I talk much better when it's quiet than when there's a lot going on... then, I tend to be silent. It's just too hard. My brain can't sort through everything. I was having fun anyway. It wasn't like, invading my brain, kind of loud. Just too loud for me to talk the whole time. Even so, especially the parents seemed to understand that and came over and started conversations with me. It's so nice to know that they get it and not have to worry about how you seem or if your eye contact is off (mine always is). I got to talk to M's mom about group homes, and sent my mom over to talk to her and they talked for a really long time. My mom and stepdad met a guy their age who has autism or Asperger's, which I thought was cool, and they hung out with him. I didn't really stick with one person; I was with all different people the whole time, and my mom and stepdad.

After bowling, we walked down a block or so to a restaurant. I generally try to eat healthy, but the only thing on the menu I could eat was fries, so I eat fries with cheese melted on top. I didn't feel so bad because they were homemade there. I try to worry more about where my food comes from than about its calories, per se. Anyway, we sat with Mark and his mom and M and her mom and talked about sensory integration issues, which apparently M has too. It turns out that one of the women in the group, C, is going for her PhD in OT and is already trained in the Alexander Techinque. C has Asperger's and went through Alexander Techinque herself and found it extremely helpful for sensory integration, so M's mom and my mom took her information. If I ever do have money, that's certainly something to keep in mind as an option.

We headed home to trick or treaters after that. I was exhausted. It was a good day.

This is totally in its infancy, so don't get all wound up now, but it bears mentioning that I'm going on a date with one of the guys from my group. Justin is 28 and works in social work with MHMR. Yes he has autism, and he's also super smart and outgoing and nice and kind. When you have autism, dating isn't one of the easier things. So far, we both think we're pretty lucky.

Feelings, my way

What follows is part of a letter to my mom that we read and talked about at a therapy appointment today. I'm sharing this because even though in the culprits were my parents, the truth is that almost everyone does it at some point. You decide that we're going to play a game, only you never tell me we're playing. You confer with the other players and decide upon all the rules, but you don't tell me what they are. And then somebody says "go," but it's always out of my earshot. That's the way autism works. I want everyone to know that, at least for this autistic person, I'm not interesting in games... I like things to be very straightforward. I want you to know that, even when I seem like one, I'm not a selfish jerk. I want you to know that I do care. That's why I'm sharing this.

"I often feel like I’m playing a game with you where I don’t get to know all the rules. For example, the other night you guys expected me to feel sorry for “putting you through all this.” I was entirely preoccupied with trying to stay alive. Because I only feel one emotion at a time (ever), and right then I only felt anxious, I was not feeling sorry. I was completely confused when you were upset that I didn’t feel sorry. How could I feel sorry when I was feeling anxious? It’s extremely frustrating to find out after the fact that I was supposed to say or do or feel things. It’s like you get a rule book and I have to learn as I go. You always seem to interpret my way of being in this world as being self-centered. Maybe it’s not. Maybe I think about you and your feelings and wellbeing far more than you know, but because I don’t show it the way you do, you just don’t know that. Maybe you haven’t thought to ask how I show it. Rather than assuming that I’m being self centered because I don’t immediately greet you upon your entering the house or because I don’t apologize for “putting you through this,” sometimes I wish you would look at the way I live in the world and realize that I have never been ungrateful or uncaring. I just feel things very differently than you do, and show those feelings even more differently. Sometimes I don’t know how to show it at all, but it has never not been there."

Look for the good

With the tough stuff that's been going on lately, I keep being reminded to "have hope." Well, that's a little too abstract for me. I can't figure out how to "have hope." Emily helped me make that less abstract by changing it to this: look for the good. So, a collection of the good...

I have a cat, and not just any cat. I have Elsie.

I may not have a lot of friends, but those I do have are incredible and wouldn't ditch me no matter what.

There are GFCF animal crackers in my cupboard.

I'm going to a Halloween party on Saturday with the autism group, so I'll get to see those friends.

I get to be a black cat at the party.

I only have one more week at the Job from You Know Where.

I'm working on making new friends.

We got booed the other day! (Someone rings the doorbell and runs, leaving a plastic pumpkin full of treats... in our case, they left kitty and doggy treats. Then, we pass it on to 3 other families).

Last night, we booed a family with 2 little boys. I watched my mom ring their doorbell and run. It was really fun to hear the little boys find the treats.

God loves me no matter what.



Okay, that took a while. It wasn't easy to find that many. My mind just isn't looking for the good on its own right now. That's okay though... I'll find it. I'll keep looking, and I'll find every good thing that happens, and I'll thank God for each and every thing as it comes. Every one.

Options

If you have a little one with autism, I hope you've already thought about this. I hope I'm not bringing something new to your attention, here. Because the fact is this: we can't live with you forever. And there's another fact: it comes up so much faster than you think.

My mom is nearing 60. She's no spring chicken. I'll be 22 in December. Living in this house has always been a struggle, because my stepdad is hard to live with. Ever since I've gotten back from college (4 years away from home in which I grately struggled to take care of myself, and didn't always), since they are no longer "required" to house me, it's been even harder. He expects me to be exceedingly grateful for being allowed to live here. I see it as um, I'm my mom's kid, and I'm not able to live on my own-- what else would they do with me? I'm grateful, but I'm not kissing feet here. Not to mention, I feel one thing at a time, and lately, that thing has been anxious. Sorry. Not thankful, not appreciative, just anxious.

So, what are the options?

One option is moving out into an apartment of my own. My mom would come over daily at first, then weaning down to a few times a week. I'd still need help with groceries, paying bills, making sure I have what I need, planning meals, etc. I can follow organizational schedules that others put in place for me, but I can't make them myself. I'd have to be set up really well ahead of time. That option might work out in a couple of years, but not yet. I need more outside structure. I need to be told when to eat, or there's a good chance I won't do it. I need to be told when to go to bed, or that might get put off half the night. I need to be told to pick this up, put that here, get ready for this appointment at this time. I need each thing, step by step. Maybe on my own... isn't the best idea just yet.

Another option is to continue to stay here. For the near future, that's the only option. Until good old SSI goes through (and it will, even if it takes a lawyer to do so), I don't have the money to live anywhere else. While I'm here, I can get to all my appointments, I have my car, I have my cat (so important!), and I have my mom to continue to help me. But things are getting tough here. We keep running into the whole, "Don't you feel _____?!" Insert sorry, grateful, like you should help out, anything for anyone other than yourself. These parents of mine understand autism, especially my mom, but my stepdad only gets it to a point. That point stops with things like understanding that my emotions don't work quite normally. That I have trouble feeling things for other people, that I'm slightly stuck in my own head. He can't get that. He doesn't get that I AM NOT A JERK. I have to keep repeating that, by the way, so that I can believe it. Okay... so, living here, also not the best option.

A third option, and one we're starting to consider, is group homes. I don't need a ton of help, but this would allow the directions to be given by someone other than my mom, who could certainly use a break. She could more than use one; she needs one. She's been scheduling and organizing me for almost 22 years. At a group home, I could get as much or as little help as I needed. I could have my own space to live in and be as independent as possible, but I could also have some outside structure to my day; when to eat, when to sleep, when to do which chores. Staff could help me get to appointments and work on time. It could be really. Anyway, this is an option that we're just starting to explore. Some people might think that being told when to eat and when to go to bed really restricts your freedom, but for someone like me who 1) has no internal sense of time and 2) has no ability to structure myself, it's really, really comforting. We're not sure how it goes in terms of payment, who pays and how, if Medicaid will, etc. Lots of questions to find out about still.

It feels good to know that there are options. Possibly ones that could be just what I need.

Raw

I assume you read this blog because you want to know something about what it's like to live with autism. Are you sure you want to know?

Autism is only being able to go to work after having six panic attacks, and that's just while trying to get ready.

It's hiding in the back room, in a heap on the floor, crying, because you just had to talk to a customer and the words didn't come very well.

It's not being able to focus well enough to read anymore because of the anxiety, so you spend all day watching T.V. and trying to study. Trying, and failing.

Do you still want to know?

Autism is your parents telling you that they can't handle the "drama" of your panic attacks anymore. That you have to learn to control them.

It's when they're angry that you didn't apologize for "putting them through this again," but you didn't know you did anything to them so you didn't apologize.

It's needing to move out because your stepdad can't manage you, but not being able to work enough to be able to support yourself.

Do you still want to know?

Autism is feeling so horrible, so anxious, so trapped inside yourself that you don't want to face another day.

It's using the only coping mechanism you have... scratching your hands... to the point that you can only scratch open old scabs.

It's questioning whether you have any good to give to this world, or if all you do anymore is take away from it.

It's feeling that so strongly that you need to get to the ER... but wait, you don't have words, and when you do get it out, you're told that your fine. No one will take you.



The past week has been pretty rough. It's been building up for a while. I've been avoiding blogging because I didn't have anything to write about; I've been consumed by anxiety. Yes, I know, there's more to the world, but when you feel like you've been startled half to death every second, it's really hard to pay attention to much else. I've only called off one day of work, believe it or not. It's only because they depend on me, and if I call off, the photo lab shuts down. I don't like to do that to them. "Do what you do when you say you'll do it" is a rule. I follow rules. It's too bad "don't be anxious" can't just be a rule.

The more practical, explanatory side of what's been going on. Things have just been bad. The other night, I was in such a bad state and really needed to go to the ER. I wasn't safe. I'm not stupid, I know better, but something had taken me over, and I wasn't safe. I was scared. My parents did not want to take me. They just kep tsaying that I was fine. They wouldn't even call the psych person on call. I talked to a friend who called the police. I considered being mad, but I was so grateful that they made my mom call the hospital that I couldn't be mad. All their beds were full, so I had to wait until Tuesday (today) when my mom could call the doctor. She did, and I emailed the doctor. She bumped up my Geodon. That should help me feel less trapped, which should help a lot. The last time I felt so bad, in July, the Geodon is what got me out of it. I made a counseling appointment for Thursday. Through email, my doctor also said that my mom should promise to take me to the ER if I need to go. She said that I'm okay right now, but she thinks I'm anxious that I won't be okay again and won't be able to get to the ER. So, Mom promised. I feel safer. I hope the increase in meds works.

I've debated back and forth when it came to writing about this. But you know, this is autism. This is my life. I never said that it was all rainbows and butterflies, did I? I just write about it the way it is, cats, rainbows, ugly, and all.

Anxiety, times a billion

All of your positive thoughts and prayers must have gotten where they were going, because my interview actually went very well! As in, I did not tell the woman that I have autism (the opportunity just never presented itself), and she said that I interviewed well. There must have been some Divine intervention there, I tell you, because interviewing and I normally would not get along. I don't know if/when I'll hear anything, but I'll tell you what I know whenever it is that I know it.

The anxiety isn't budging. In fact, it's getting kind of crisis-y. I don't really know what else to say about that. I wish I knew why this happened, but I don't. It's so random, it seems. It just hits, and then it increases over some weeks until it's completely out of control. My mom says that I should take a few days off work if I can't handle it. My stepdad says I most certainly should not, that I'll risk losing my job. One of the things that upsets me most is when I get conflicting instructions from people. Now I really don't know what to do. I guess, unless I'm actively having a panic attack as I'm getting out of the car, I'll go to work and stay as long as I can handle it. I've disappeared into the back room, panicked, and come back out to continue working before. It's slow enough that I can get away with that. But, you know, just wondering... how much longer do I have to live like this?

Hi ho, Hi ho

Some kids with autism like to watch the same segment of video over, and over, and over. When I was about 2, I had a thing for "Hi-ho, hi-ho, it's off to work we go..." from Snow White. It was on a sing along video tape and I used to cry for Hi ho. I had never seen Snow White and most likely wouldn't have given it the time of day. But Hi ho, now that was magic. (For the record, but my doesn't remember this. Or my tantrums. Or me hitting my cousins. Sigh).

Anyway, I'm having major anxiety at work again. It starts as soon as I get up on any day that I work, and it increases until I get to work. It's intense the whole time I'm there, and then it gets better when I finally get home.

Everyone agrees that my anxiety wouldn't be so bad if I actually had something to do at work. I totally agree. I go, and I sit. I read for an hour. I Facebook for a half hour. I do 10 minutes of work. I read for 20 minutes. I go on break. I read, Facebook, then clean up and go home. It's basically the same every time. There's so little work to do that, short of e-mails and Facebook, there's nothing for me to do there. The anxiety builds and builds. It's worst when I have to talk to a customer, because I tend to mess up with customers. I forget that I have to treat them like people and not like objects. Ugh.

I have an interview for a new job tomorrow. The job involves an after-school program through the YMCA at the local elementary school-- doing games, snacks, and homework with the kids. I've done three or four programs like that (experience, see?) in the past, and I love them. It would be 3 hours a day, 15 hours a week, which is perfect for right now. 3 hours is the perfect amount of time for me to be out of my house without getting overwhelmed. Also, I'd be busy, which would hopefully help to abate the anxiety. That's the hope.

The big issue is how poorly I interview. You know... stimming, lack of eye contact, lots of pauses in my speech... all things that don't go over well "professionally." Leigh suggests that when they ask why I'm not teaching, even though I have a degree in Elementary Education, that I explain that I have mild autism and that it's too hard for me to be away from home for more than 4-5 hours at a time, but that I'm perfectly fine for shorter periods of time and great with kids. Not to mention all that experience in this area!

So, do me a favor tomorrow morning, and send me all of your positive thoughts and prayers, please? I'd really appreciate it. I'll let you know how it all turns out.

Big screen woes

Blame it on processing issues. Blame it on sensory issues. Blame it on attention issues. Whatever you want to blame it on, I have serious TV-watching issues. I can't follow the plot line of TV or movies. Maybe the best way to explain this is to tell you my understanding of the plot line of some of my favorite movies, and you can compare it to your understanding of them.

Star Wars: It's a long time ago; far, far away. There is some sort of alliance. There are bad guys trying to take over the galaxy. Some people have the Force, which means that they can either become bad or good (Jedis). Darth Vader grew up as a Jedi but turned to the dark side; his son Luke is a Jedi. There are Ewoks. There is R2D2. There is C3PO. Uhhh... that's about it. How many hours of movies is that? That's all I got.

Lord of the Rings: Some guy made all these rings a long time ago, and there is one ring that controls all the other rings that Bilbo found back in the day. Now his nephew is trying to get it destroyed. I can never keep track of who's bad and who's good and who's fighting what side. The elves come in somewhere. There's a Fellowship. Uh, something about two towers. We think Gandalf dies, but he's really okay and comes back again. Gollum had the ring for too long and turned creepy.

Moulin Rouge: Christian kind of lies and makes Satine believe that he's a duke, but he's not a duke, and she falls in love with him. But then she finds out he's not a duke and she's mad. So they write a play? Right. So they hide their love the whole time. And then Satine dies. There's a lot of singing and dancing, though!

As you can see, I really struggle. I get bits and pieces, but I can never figure out how one thing relates to another. Mind you, what I wrote is basically everything I got from each of those movies... not just the summary. Maybe the problem has to do with not understanding people's intentions. I know some of it has to do with not understanding why/when people are lying (or not disclosing the full truth about things)... that really confuses me. I still really like to watch movies though, which really doesn't make sense. I like to watch the Food Network and Discovery Health... that, I follow just fine.

Oh happy day

I was really nervous going into today. Today was the appointment with the psychiatrist for the evaluation to determine whether I am "mentally fit to work," and if so, in what capacity. I didn't have any idea what I was getting into, what he would ask me, whether I would tell him that I have autism or not, whether he would pick up on it in a 2-hour long session. How was I going to survive the 2-hour session? That was the other issue. I put my pumpkin in my purse, wore a new cotton sweatsuit kind of outfit that my mom got me that actually goes together so I'd look put together (says mom), and kept a squishy toy in my hand the entire time.

It turned out to be a straightforward Mental Status Exam, which Leigh had to practice doing and practiced on me last year. I knew what was coming. It was even the exact same questions (i.e., the same numbers in the math problems, the same words to spell, the same proverbs to explain... which I still didn't know!). Once I realized that it was the same thing, I felt so much better. I could do that. I told him that I felt like I was cheating! He said that it's okay, because a lot of people get more than one MSE.

After 90 minutes of question after question, his conclusion was that I have autism and anxiety (but no depression). He thinks that I can work in some capacity, perhaps 16 or at most 20 hours a week, but no more, without shutting down. He's going to report that to the SSI people. I should hear within 30-60 days. He says that if I am denied, I should appeal, because I am really, really eligible for SSI, moreso than a lot of other people he says are eligible. So, time will tell what happens. Please send up a prayer about it!

After the appointment is when my happy day started. I looooove fall/harvest things, and it was time for Mom and I to go pick a pumpkin! First, we had to stop and get some pumpkin ice cream to prepare (mmm, ice cream!). Then, we went to the farm. They have a whole section dedicated to allergen-free foods, so we stocked up on some GF breads, animal cookies, cake mixes, and stuffing bits for Thanksgiving. I heard crazy noises coming from somewhere, and I followed them to find... a pig! And a cow, and a donky, and some goats and a bunny and sheep! I had never met a cow, and this little calf was adorable. See for yourself!

Then, finally, we found a nice, big pumpkin. I'll be at a bowling/out-to-dinner party with the autism group on Halloween, so we aren't going to carve it. I love it, in all its orange, pumpkiny glory. Here's mom and the pumpkin!

Walk Now for Autism!

I'm having a rough day, so I hope you'll forgive me for providing you with a just-the-facts run down of my trip.

We spent 4 hours in the car with no listenable radio stations, so we talked a lot.

We got to Leigh's and were greeted by a very excited kitty and a very wound up dog. Here's me and Joe:

We stayed up way too late giggling and goofing around Friday night.

That meant that we were ridiculously tired Saturday morning, so we had to drag our butts out of bed for the walk. We did as such, and we we went to Baltimore. We walked roughly 3 miles (we think it was a little less) in the rain, but we had fun. Leigh got an Autism Speaks puzzle piece magnet for her car, and I got an Autism Awareness one for my mom's car. Here are 2 pictures from the walk:

My version of eye contact :) Except not really, because Leigh was taking the picture, but that's still how it usually is

Then, after the walk, we went home and made a really good lunch of honey-mustard chicken and brown rice. It was delicious!

After lunch, we went to Leigh's family friend Susan's house. Susan has an orange-and-white cat named Marmalade. Marmalade is scared of men, so I told Susan how she can use positive reinforcement to get him used to men over time. I pet and played with Marmalade while Leigh and Susan talked.

Then, possibly the highlight of the trip for me, we went to Circle of Hope, which is a therapeutic riding center. I've been wanting to ride a horse for ages. I've only ridden once, when I was about 8. I didn't get to ride, but we got to watch 2 girls have their lessons, one of whom has autism. Leigh showed me around. I met a very, very old cat named Twix there who was sweet as could be. I also got to pet a ton of horses! They all put their noses through their stalls and wanted to be pet. Great big kitties! The horses are beautiful, and if/when my SSI money comes through, riding is one of the first things I want to do. I loved those horses!

After horses, we got Coldstone ice cream. I got pumpkin pie ice cream with white chocolate chips. Mmmm, ice cream!

From there, we went to visit Leigh's friend Tam about 45 minutes away at his college. His roommate is from Japan and is an awesome classical guitar player. Tam is super technologically gifted. For example, he's created a "party" button on his computer; it's a touch screen, and if you touch this button, all the lights in the room turn off, crazy lights go on the ceiling, and music starts playing with some crazy bass. Tam is a real character!

From Tam's, we rode back home and got Chinese. Mmmm...

We crashed early Saturday night. We were exhausted!

I guess I should maybe leave out this part, but the next thing that happened is that Leigh got sick. But it's okay, because she felt better when she got up in the morning. I said that I'm reporting the facts here, and those are the facts.

We got up Sunday and went to church.

Then I took a nap with Joey, who cuddled with me. My kitty doesn't cuddle like that. Ohhhh, Joe. There's just no kitty like him!

Finally, we hung out with Leigh's two friends Josh and Reino. Josh made Leigh and I free drinks(!) at Starbucks, then we went and got lunch at Chipotle. Mmmm, guacamole!

Finally, we headed home. And I slept well, I might add.

I challenge you?

In 30 minutes, I am leaving to go home with Leigh. Tomorrow morning, bright and early, we will participate in the 2009 Walk Now for Autism Speaks. Autism Speaks is currently working on a huge research project (in partnership with IAN, the Interactive Autism Network) about how adults on the spectrum are living. That's why I'm walking.

Here's the deal. I've raised $475. My goal is $500.

I was about to come on here and put it out to all of you in Blog World: come through for me. It's $25, and I know someone can afford to give it. It would mean the world to me.

But as I was writing my post, I was telling my friend D (uh, we refer to her by her last name, so I can't tell you who she is!) on Facebook. I was telling her how close I was!

You know what she said? Done.

I said. Think hard first! You're in college, you don't have money.

She said okay. You're my friend. This is so important to you. Thinking, thinking, thinking. Done.

My friends are the coolest. I'm off to Baltimore. Catch you on the flip side. And oh, there will be pictures.

The importance of a pumpkin

With autism, some behaviors fall under the criteria of the DSM-IV. For example, if you're ond of the people reading this who knows me in real life, you probably know that I don't make eye contact. That's in the DSM ("marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction"). You know that I absolutely love cats. That, too, is covered in the DSM ("encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus"). Or, you might recall the times that I've left the room during a social gathering or hidden in the bathroom. The DSM calls that "lack of social or emotional reciprocity, including preferring solitary activities."

But there's a whole slew of other behaviors that the DSM doesn't list. That doesn't mean that these aren't just as common in autism, pretty much across the board. One of those things is the sensory issues. My hating loud noises, not being able to tolerate raw fruits and veggies, and hiding from fluorescent lights are all sensory hypersensitivities. Another common issue in people with autism is processing problems. For me, the main issue is auditory. It takes me longer to process what I hear, especially in background noise. In fact, if there is a significant amount of background noise, I'll go so far as to say that I can't hear you... it's not a volume thing, though. Also, I can't follow conversations with more than one other people. I get lost really quickly. I'm not ignoring you, I just have no idea what's going on, so it gets hard to keep acting like I'm paying attention.

The thing that's popping up lately... I'm guessing that it falls into this second category of behaviors: ones that aren't listed in the DSM, but are fairly common in people with autism. I get attached to things. It started like it does with most kids; I had a blanket that I carried everywhere. Embarrassing moment, though. I carried it almost everywhere with me until Kindergarten. It went in my backpack to go to pre-school. I got really anxious without it, but if I knew it was tucked in there, I was fine. Over the years, the list included a series of plastic animals (I remember an elephant, a zebra, and a turtle), a block, a racquetball, a squishy ball, a sand-filled lizard... you get the idea. It's always something little, and it never makes a whole lot of sense. I just get attached, and that's that. For maybe a month, it goes everywhere with me, until it passes.

Fall is my favorite time of year. I was at the grocery store the other night getting Diet Coke (yes, I am addicted), and I saw the cutest little pumpkins, 2 for $1.49. I decided to get 2, not knowing what I would do with the second. I wanted to put one up in my room to decorate. It would be nice and festive. Well, one is on my bedside table. I took the other one to show my mom. Then I brought it by my computer with me. I brought it up to bed. And down the next morning. And back up for my shower. And... this is my pumpkin now.

This was all well and good until I had to go to work today. The pumpkin went upstairs when I got a shower, and back down so I could get my shoes on, and... uh oh. I had to leave. But, pumpkin! I was frantic. I was anxious. I needed my pumpkin. Now what? I strongly considered throwing it in my purse, but decided that it was ridiculous. For the record, this pumpkin is in no way personified. It is a pumpkin. I get that. But I need it! I went to work without it, and upon walking into the store, I regretted it. I was anxious the whole time at work. I had to pull out the cats (the pictures on a keyring) and look at those for a while, which made me stim, as cats will do.

I wish I could explain my need of my pumpkin. It's grounding. It soothes my anxiety. It's familiar. It fits perfectly in my hand. Holding my pumpkin is a little bit like a hug (a tight one, not a painful one!). It brings me back.

Tomorrow, the pumpkin goes in the purse. It's coming to work.