>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!