Wednesday, December 30, 2009


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.

Sunday, December 27, 2009

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.

Thursday, December 24, 2009

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.

Tuesday, December 22, 2009

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!


Tuesday, December 15, 2009


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 :)

Saturday, December 12, 2009

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.

Thursday, December 10, 2009


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?

Tuesday, December 8, 2009

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!

Monday, December 7, 2009

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.

Friday, December 4, 2009


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!

Wednesday, December 2, 2009

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.