Saturday, January 30, 2010

I'd rather be normal today

1. My parents are going to an IMAX showing of Avatar on Sunday. I think I can handle those scary aliens (Leigh assures me that they're not scary; they're good). But can I handle an IMAX? That's a lot a lot a lot of stimulation all at once, both visual and auditory. Should I go, but bring my headphones and close my eyes when I need to? There's a ride at Disney World that's like an IMAX, and you fly over California (it's called Soarin'). It's one of my favorite rides in the park. It's so exhilarating. Maybe I'll like the movie too? But if it's really bad, and I melt down, then what? I'd rather not be autistic today.

2. There's a guy in my autism group who has done some writing and editing. He asked if he could read my book, so I sent some of it to him. It's about 75 pages long at this point, so I've been working on it. He said that it's too stream-of-consciousness and doesn't have a strong enough sense of audience. I don't know how to fix that. I'm not a writer. I just write what I write and then hope someone reads it; I can't change how I write for difference audiences, just like I can't change how I speak when I'm talking to kids versus adults. So what do I do with the book? Ditch it? Keep writing it, but keep it for myself and forget about getting it published? Realize that his opinion is only one and put all the work into it at the risk that no one will like it? I'd rather not have something worth writing about today.

3. I met with my case manager yesterday. His name is Jeff, and he's in his 40's, and he's really nice. He doesn't talk to me like I'm stupid. He had never worked with someone with HFA so he asked lots of questions, which made me more comfortable. He's going to help me find a job (though I have a lead on one now and would appreciates good thoughts and pryers my way), get housing, get furniture for my apartment whenever I need it, apply for cash assisstance, help with getting SSI, and above all, make sure that I get what I want for myself. Not what my parents want. Not what my doctors want. He's here to advocate for me and help me get (within the limitation that it's beneficial for me) what I want. I like that.

So all this sounds just perfect, right? Wrong. While we're on the subject of what I want, I don't want a case manager. Case managers are for people with mental health issues, which I don't want to have. Normal people don't have case managers. I want to be normal. Megan says that he'll help me to be more normal, so I might as well accept the help. I still don't feel good about this. I'd rather be normal today.

Thursday, January 28, 2010


Something I really struggle with is spending time with God everyday. I don't like to just sit in silence. It's unnatural to me. I like to read, but I don't like to meditate on what I'm reading. I just want to barrel on through. I don't like to ask myself deep questions and sit and think about them. It's just not my style.

I worry that my faith doesn't.... work... like other people's. Even just for the reasons listed above, I feel like my faith is different. I don't pray, or bible study, or worship like they do. Doesn't God expect me to do those things? Doesn't it say in the bible to pray continually, hide His word in your heart, and worship none but the Lord your God? It does. But my friend Jen makes a good point, one of which she reminds me frequently. God will not punish me for the way He created me. Autism and faith can work together, for the very reason that they both came to me from God. They can. They must. But how?

I can't deny God's commands. I don't get a "you don't have to pray" command or freedom from the command to study Scripture just because I'm autistic. What God gives us all, however, is the ability to fit these commands into the way He has made us. I may not like to pray out loud or even silently in my head, but I can write my prayers in OneNote, almost like little emails to God. I don't like to worship in large groups, but I love to spend time alone with God and a a good cat or two. I spend my time loving the cats and praising God for creating them so incredibly. And, just because I don't like to sit and meditate on passages of Scripture doesn't mean that I can't study the bible in a way that I do enjoy. In fact, that's been a recent discovery of mine: I love to look up bible passages on a certain them.

I've looked up verses on "body," which include verses about our mortal bodies along with those about the body of Christ, the Church. I've looked up verses on God's plan, as I sit here and wonder what my future holds, worrying that I'll never be of any use to anyone. And, just now, I got the idea to look up "strength." What does God have to say about my strength?

I found out today that Leigh is for certain going to Mexico, for an entire year, as of sometime this summer. I want more than anything to be excited for her and share in her joy. So what did I do? I cried. I threw my phone, and I cried. The very thought of so much change in my life is more than I can handle. Trying not to put a damper on Leigh's certain excitement, I decided not to talk to her about it. I talked to Heather, a friend from color guard in college. As we talked through my wretched mood, she said, "You're one of the strongest women I know. Who else always has a smile despite all the stuff she's going through? You can handle this. I know you can."

Well let me tell you something. I don't feel strong. I feel extremely weak, beaten, crushed, useless, even. Anything but strong. I'm learning, slowly, that how I feel, though, isn't always an accurate indication as to what is true. Hence my mission to find out what God says about my strength. A search for the truth. What did I find?

1 Chronicles 16:11, "Look to the Lord and his strength; seek his face always."
Psalm 46:1, "God is our refuge and strength, an ever-present help in trouble."
1 Corinthians 1:24, "The weakness of God is stronger than man's strength."

It's not about me being strong. 2 Corinthians 12:10 says, "That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." My strength isn't the issue here. It's about God's strength. He is tthe only source of strength, and he is infinitely strong. And that, truly, is all that matters.

Wednesday, January 27, 2010

You might remember this letter that I wrote to the vice president of student life at my former college. I went to a small, private, Christian college in Western Pennsylvania. It's extremely academically-focused, and students there can be a little over thee top when it comes to achievement and success. Sometimes, I think they all need a reminder that grades don't get you into heaven. But that's for another post.

I've spent the past week (yes, almost an entire week) with Leigh at the school. The #1 reason I went up was to do our secret Santa gift exchange from Christmas. I was upset while in the hospital and Leigh suggested that I come up to do Christmas with her and her roommates. It really gave me something to look forward to. The #2 reason I went was to sit down with the VP of student life about my letter.

So on Thursday afternoon as I waited outside his office, I was nervous. I can do fairly well at talking for short periods of time, but I wear out and start staring off into space pretty quickly. My eye contact has gotten better, but only for a little bit at a time, and then I just have to stop. I had told him that I have autism, but I was still nervous about what he expected from me. I don't like to "pull the autism card" and lower people's expectations of me, but I'm also trying not to be ashamed of it. It's such a fine balance.

It turns out that I didn't need to be nervous at all. Mr. H was welcoming and caring. We talked for almost an hour. Some of the things we discussed in that time:

1. Before Mr. H came to campus two years ago, there was really no plan in place for students with disabilities. Since then, he has developed a policy in which the student in question provides a doctor's documentation with suggested accommodations, sits down with Student Life and discusses which ones the student wants to implement in which classes, Student Life sends an e-mail to each of the student's professors with the accommodations (not the diagnosis), and the student discusses with each professor indivudally to figure out how the accommodations will work in each class.

2. Mr. H has also developed a "freshman packet" to send to students the summer before their freshman year. This packet includes a section on students with disabilities and the appropriate steps to take.

3. The student handbook now includes a section on disabilities, listing the policy and who to contact if the student wants to pursue this.

4. There are 80 students just with learning disablities on campus. This is out of something like 2300 students. This is a much higher percentage than I (or anyone, I think) expected. Most of them (44) do not receive any accommodations. Those who do are typically very quiet about it, because of the academic competition on campus. They're afraid that other students will perceive them as getting an advantage when it comes to grades.

5. Mr. H agrees that my situation with student teaching was not handled correctly. He is going to talk to the department chair about what happened versus what should have happened.

6. He agrees that faculty and the counseling center need to be more aware of how to handle students with disabilities. He recently held a lecture on students with disabilities for faculty, but it wasn't well-received. He is going to add a section to the faculty handbook to explain the policy and continue to think of a way to draw attention to this so that another student doesn't fall through the cracks. He said that my situation was "unacceptable" and "a shame."

I feel much better having sat down and spoken with him. I'm confident that he will truly follow through on the things he said he would do. I'm not very familiar with the higher-ups at the school, but if the College regularly hires people like Mr. H, then we're all in good hands.

Monday, January 25, 2010

The truth about truths

The truth about my 10 truths is this: I don't believe them. I write them because somewhere in myself, I know that they're true, they're just all but impossible to live out.

Do you want to know the truth about what I believe, or what I live like I believe? Here we go.

1. Autism is a leech. It steals my personality and my humanity.

2. Who I am needs to be changed from the inside out.

3. Autism? It sucks.

4. I will never be accepted as beautiful in this world, and I should stop trying.

5. My value is in my looks and my success at seeming non-autistic.

6. God is distant.

7. People may love me despite my autism, but they will never love me because of it.

8. Sometimes I need help. I need more help than the average person to get through the day. That's not okay. I need to be like everyone else.

9. I can't make a difference in this world when I'm not working. All the matters is whether I'm making money.

10. I shouldn't need support to reach my goals; I should reach them on my own, like everyone else.

As you can see, my positivity is a bit of a farce. Sure, I get flashes of it, but they're gone as quickly as they hit and I'm back to being negative. I'm trying to be positive, though. I thought I would write out what I want to believe, and that maybe that would make it more real for me. I wasn't going to explain the reasoning behind writing my list, but then it would be a little like lying. You would believe that I really felt that way all the time. When I set out to write this blog, I decided that I would be completely honest with Blog World, because my goal is to explain what it is like to live with autism. The truth is that it's not all fun, and sometimes, I want it to go away.

Sunday, January 24, 2010

10 truths

1. Autism is part of what makes me who I am.

2. Who I am is good. As long as I continue to become more of who God created me to be, I should not try to change who I am.

3. Autism is not a bad thing in and of itself.

4. God created me to be beautiful. I am beautiful, regardless of what the world might say.

5. My value is not in how un-awkward I can be, what I look like, or what I wear. Those things do not make me more valuable.

6. God wants the best for me. He blesses me daily. Hourly. By the minute.

7. I know that there are people who love me despite my autism. I also want them to love me because of it.

8. Sometimes I need help. I need more help than the average person to get through the day. That's okay.

9. Whether or not I am working, I am making a difference in this world, and that's what matters.

10. I am capable. I will work again, I will live on my own, and I will even have a cat. With support, I will reach my goals.

Thursday, January 21, 2010

College cats

I find cats everywhere I go. They know I need them. They find me.

My first two years of college, I tried to conform to be like everyone else. I had one friend who I mostly hung out with, and I tried to be like her, because she was "normal." I didn't know at that point just why I was so different, but I knew that I was, and I tried to hide it. I tried to be a "normal" friend. In case you're wondering how that worked out, she broke down and said she hated me at the beginning of my junior year. I had no friends, and I kept to myself, until I met Leigh. When I try to be friends with people and don't act like my true self, it falls apart.

Well, getting to the cats... one day, I was walking down the street with that friend and a few others and I saw cats in a store front. I got really excited. I said that I wanted to stop and pet the cats, and they told me that I was being ridiculous and couldn't just stop and pet people's cats. It was a store, for goodness' sakes; they weren't people's cats, they were up for public petting if they were in a store. Still, I was too determined not to be the weirdo, so I didn't push it. But I never forgot about those cats.

A year or so later, without many human friends to speak of, I went back to that music store with the cats. I went in, and without even introducing myself to the guy at the front desk, I played with the cats. I started to come down every week or so, often bringing a string. As I got to know Leigh, she started to come with me. Sometimes, after a particularly rough day, we would walk down to the cats so that I could feel better. Over time, I got to know Chuck and Kevin, the owners. They, and the cats, began to expect me. I'm grateful that they never make me talk to them. I can just say a quick hi, and then spend my time with the cats. After a few months, Chaos, my favorite of the cats, would come running to the front of the store when I came in. Kevin affectionately calls me Chaos's "girlfriend."

During my sophomore year of college, I was walking around outside with the old friend, when a cat popped out of the bushes. He was super friendly. We took him to campus safety, hoping that they would be able to tell us what to do with him. They said that they were aware of his presence, but that all of the local shelters were full and would just put him down, so they were hoping that his family would find him. It was December and cold, though, so we couldn't just leave for Christmas break and let him stay on campus with no college kids to feed him. I lived underground at the time. My window was below ground level and had a dug out area around it with bars over the top. From outside, we simply removed the bars, put the cat in the dug out area, then opened the window. Out popped the cat onto my roommate's bed! I kept him for three days, and he was thrilled to have food and get brushed and sleep on a heated blanket. When my mom came to pick me up to take me home for break, she brought a cat carrier. My friend put the cat in the carrier and drove home to New York with him. There, she dropped him off at a no-kill shelter near her home and visited him everyday until he got adopted. Happy ending.

The other cat that I managed to find also lived outside on campus. It was starting to drop into the 20's at night, and again, it was almost time to go home for Thanksgiving break. My mom has some old friends that live in a farm, and they have mousing cats that they also provide food for. So, I brought the kitty into my (also underground) room for a day so that I could find him at a moment's notice (I brought him down in a box, right int the doors). I called the friends who were more than willing to take him. They brought a cat carrier, and we got him settled. Last I heard, he was doing great.

If you need a cat, one will find you. They know. Even if you try to hide your love for cats, they won't let you. They'll come tracking you down until you have to display just what a cat lover you are. They don't care if people think you're weird; they'll love you anyway. If you're really lucky, your people will still love you too.

Monday, January 18, 2010

All chopped off

I got my hair all chopped off. Just thought I'd let you know :)

Wednesday, January 13, 2010

These are a few of my favorite things

Diet Mountain Dew for breakfast,

and Elsie,

and softest-kitty-ever Joey,

and Facebook chat and Skype chat,

and volunteering at the animal shelter,

and Alton Brown,

and a new haircut (even though the actual haircut is kind of painful),

and quarters that spin and stop!,

and my new GPS that says the street names,

and working out while watching The Biggest Loser,

and Lolcats,

and freshly painted (pink) nails,

and candy canes, even though it's after Christmas.

And my post did its job, which was to make me cheer up. Mission accomplished. If you're ever sad, I recommend writing a list of your favorite things. It works every time.

Monday, January 11, 2010

Another dilemma

For the past few months, I've been going to a kind of HFA/AS support group. Once a month there are social outings with family members (movies, the mall, the baseball game, bowling, etc.) and then once a month there's a discussion group at the library. I've gone to three or four social outings with my mom and two discussions.

I'm not sure if I want to keep going or not. It's nice that some of the people understand what I'm dealing with and have similar issues, but I find that I don't have a lot in common with most of the members (who are, vastly, male). More than a few of the people in the group talk excessively. Moreso than anyone I've ever met. You can't get a word in edgewise. Being someone who tends to be quiet, I find it impossible to carry on a conversation with someone like that. It becomes entirely one-sided. It grates on my last nerve. To an extent, I suppose they can't help it anymore than I can help being quiet, but I still find it very difficult to be around and really start to lose my patience.

The other issue I have with the group is its whole mentality. There seem to be two schools of thought within the group. Some are mired in their disability. Most don't work, and many of them have little interest in ever working again. They seem to expect the world to pave their way. I notice a lot of "I can't because of my disability." One person discussed the fact that her parents bought her a house but not her brother. The person said, "I'm disabled. I deal with enough with my disability. The least they could do is buy me a house." I was floored. Even if my mom had the money, she wouldn't buy me a house. She might help me to pay for an apartment until I could get my feet on the ground, but not a 2-story house to live in myself. I find it almost obscene for someone to expect things like that of others. My mom constantly says, "I think you can work in some capacity." I think she's right. Not right now, mind you, but I'm volunteering at least 4 days a week. I will not be a taker in this world.

The other side of the group mentality is what I consider to be the "Aspie subculture." Nothing gets to be like that little word "Aspie." Why would you cutesify a pathological condition? I suppose because it makes it more acceptable, less intimidating to deal with. These people think that there's nothing wrong with "being an Aspie," but that society at large is to blame. Society this, society that. "NTs," or neurotypicals-- non-autistic people-- are looked at as "aliens." In their minds, conforming to the "NT world" is the worst thing you can do. Be an Aspie and be proud. If something in this world is hard for you, blame society! Ugh. No. There is a lot wrong with society, but that's for another time and place than my blog. The reason I struggle to fit in is because I deviate significantly from the societal norm. I deviate because I have a neurological condition on the autism spectrum. I am not, not will I ever be, an Aspie. Shudder.

All of this aside, there are some really nice people are group who I like to be around and laugh with. The badgering questions, the nonstop talking, and the group mentality though, makes me leave the group very frustrated, every time I go. The social outings tend to be a more low-key group of people than the discussion groups, which I almost can't bear. If I do stay in the group, it will probably just be the social outings.

So what's your take on the subject? Stay or go? How do I deal with the frustrations?

Thursday, January 7, 2010

Want some tics with your stim?

I've always had a few motor tics, mostly facial ones. They started when I was probably 2. At any given point, I'm pretty sure I had at least one active one. It was never a big deal. I got made fun of briefly in 3rd grade for it, but that was the most that they ever bothered me. My parents were so used to them they hardly even noticed. No one ever gave much thought to them.

Until this summer, that is. When I switched from Paxil (which made me gain a significant amount of weight) to Celexa, I noticed that I developed a new facial tic. The one or two I had got stronger. I told my mom that I thought the Celexa was making my tics worse. She said it was probably coincidental, and that was that. They weren't out of control, just annoying.

Well, until recently, that is. When I was in the hospital, my Celexa got increased from 20mg to 80mg, and whoa. Watch out. I'm constantly ticcing. Constantly. I definitely have at least to motor tics (all facial now) and one vocal tic (clearing my throat), which means that I now have full-blown Tourette's. All because of the medication.

I'm embarrassed to go out. I'm embarrassed to sit and watch TV with my parents. I'm embarrassed to go visit Leigh and her roommates for "Christmas in January" in a few weeks. I really hate these tics.

We tried Option 1, which was to add Tenex to my medications. It made me so ridiculously tired that I couldn't function. I all but quit talking again. That was no good.

Option 2 is to switch from Celexa to another SSRI. The reason why this seemingly simple change isn't Option 1 is because I don't switch SSRIs well at all. I stop the first medication and start the new one. The new one takes about two weeks to kick in at all, and a month or so to take full effect. The last time I switched SSRIs, from Paxil to Celexa, was this past summer, and the anxiety got so bad that I had to be hospitalized until the Celexa kicked in. Still, it looks like this is the option we're going to try next, later in January.

Tics and stimming can look so similar. How do you tell the difference between the two? I'll tell you my rule: stimming feels good, ticcing does not. I want to stop the tics, but the stims I'm happy to do. That's my unofficial, unproven rule of thumb.

Hand flapping? Stim.
Throat clearing? Tic.
Constant tapping? Stim.
Fingerspelling in ASL? Modified stim (trying to control flicking fingers), but a stim nonetheless
My jaw? Tic. The worst one I have. It's nonstop.
Biting down? Tic.

Stims= good. Tics = bad. Let's get rid of these tics, already.

Tuesday, January 5, 2010


In lieu of working for money, I'm going to spend the next few months working for free. I'm going to volunteer. It gives me a chance to get out of the house and do something useful (I like to feel useful), build up my resume, and build up myself while I continue to try to become more stable. It's hard to learn to be stable when you're stressed out like crazy from trying to work. Volunteering is less pressure.

The first place I went to volunteer is with the cats at the animal shelter. My aunt goes once or twice a week. The jobs include socializing the cats (inside or outside of the cage), changing litter, and feeding them. I'm ideal for this job! The shelter is small and is run almost entirely by volunteers. There are probably 30 cats there are any given point. I'm not anxious when we go to see the cats because 1. it's cats and 2. my aunt is there. It's like double duty therapy for the cats and for myself. There are two little rooms that you can take the cats into and pet, pet, brush, play, and pet some more. Most of the cats like to come out of their cages, but some are too scared. If they're too scared, you pet the cat in the cage and give her some time to warm up. Sometimes, if you throw a towel over the cat, you can make her feel more secure and then you can take her out.

The next place I went, this morning, is a local food pantry in the basement of a church. I almost didn't go because I was so anxious about driving to a new place and having to say who I was and what I wanted to do. I really don't do well around new people. So, I got there an hour late because I was at home debating whether I should go. I didn't know exactly where the building was, and since my mom works super close to it, she drove me down and came in with me. She found the lady in charge (she just called her name in a huge voice into a room a people; something I'd never do). She said that I'm her daughter and I was there for volunteer. I'm so glad she came with me, because I don't know what I would have done on my own. That's something I really need to work on. I need to be able to go places and ask questions for myself. It just makes me so anxious that I avoid it at all costs. In fact, the entire time I was at the food pantry, I'm pretty sure I didn't talk once. I was a little overwhelmed by all the people moving in fairly tight spaces. I think I'll keep pushing myself and go back next Tuesday, though.

Finally, I start volunteering at the library on Monday. They're going to see if there's something I can do in the children's department. I'd like to put books away. I like the rules and the order involved in that. Plus, I could see all the children's books. I think that would be fun. Nice and quiet, too.

So, I've got the cats probably on weekends, the food pantry on Tuesday mornings, new therapy on Tuesday afternoons, the library on Monday and Thursday afternoons, my research study on Wednesday and Friday afternoons. Sounds like a full schedule to me!

Saturday, January 2, 2010

Now that I'm home

Autism makes a psychitrist's job quite a tricky one. You're trying to find out someone's feelings, when the person in question can't describe them to you. I think I would get frustrated, if I were the psychiatrist. I think maybe they did get a bit frustrated, not at me, but at the lack of information and being unable to help like they wanted to.

The first question was, am I really depressed? Maybe, because I was feeling rather hopeless. But maybe not, because I could laugh and smile at things just fine. But maybe so, because my concentration was absolutely gone. But maybe not, because I didn't feel sad most of the time. But maybe so, because I had some pretty intense crying spells. See the problem? They can't just ask me, because I don't know. They had to look at my behavior, which could have gone either way. If the problem was straight up depression, they can explore other medication options or even ECT (electroconvulsive therapy). But if I'm not depressed, those other options have no chance of working.

In the end, I think they decided that it probably wasn't depression, and kept me on the same meds with an increase. They increased the Celexa from 20mg to 80mg. Unfortunately, Celexa makes the few tics I have so much worse. And being on 80 rather than 20 doesn't help the tics at all. So, my doctor also put me on Tenex to try to control the tics. Great. Psych med number 4. It hasn't kicked in yet, but I wish it would.

I had thought that I would go to partial once I got home. My doctor talked with the doctor in charge of partial, though, and they decided that since I got a little overwhelmed by all the people and talking when I was there this summer, to the point that I had to leave the room every hour, they didn't want to try that again. Instead, I'm going to see an outpatient therapist who specializes in Asperger's, probably twice a week for a while. Between seeing him twice a week and going to my autism research study twice a week and seeing my regular therapist every two weeks, that should be enough structure to keep me occupied. I hope it is, anyway. I've also been volunteering at the animal shelter with the cats, taking them out of their cages and petting them. I go with my aunt. The cats are thrilled to be out for a while (most of them are, anyway; some are scared) and I'm thrilled to pet for a couple of hours. It's good all around.