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."
Saturday, October 31, 2009
Friday, October 30, 2009
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.
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.
Thursday, October 29, 2009
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.
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.
Tuesday, October 27, 2009
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.
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.
Friday, October 23, 2009
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?
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?
Wednesday, October 21, 2009
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.
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.
Sunday, October 18, 2009
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.
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.
Wednesday, October 14, 2009
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!
Monday, October 12, 2009
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.
Friday, October 9, 2009
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.
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.
Wednesday, October 7, 2009
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.
Tuesday, October 6, 2009
Drawing boxes
Well, I am officially off and running on my medical transcription courses. Within the next year, I will be a medical transcriptionist. Why is that so exciting? I will be able to work from home. I won't be so drained by work that I won't be able to do anything else. I'm excited to be learning again and have something to do with my mind. I'm doing the course through Career Step, and it's being entirely paid for by the Office of Vocational Rehabilitation, books and CDs and everything. This is the second time in my life that having a "disability" has done something good for me, made something easier. I'm being spared the $2000 it takes to go through this program because of my autism. In case you're wondering, the other time was the lines in Disney World.
We're getting there, I guess, with the Medical Assisstance and SSI, too. SSI is sending me for a "mental evaluation" by one of their own psychologists on October 14th. I'm very anxious about it. I have no framework in my mind for what to expect from this 2-hour appointment. What will they ask me? What if I lose my words before we're done? What if they conclude that I don't have autism, and I have something... else? That would certainly mess up my whole application process. Doctors can be really, really stupid, you know. In a way, my anxiety is going to work for my benefit, because it makes my autism symptoms show more. Still, it's not a fun way to feel.
The last piece of the puzzle for Medical Assisstance is a letter from my psychiatrist that explains my diagnosis, my capabilities, and what the doctor foresees for my future. The problem with that is as follows: my psychiatrist doesn't get it. Yes, she specializes is autism spectrum disorders. I've only met her twice, though, and she seems to think that because I can sit and talk with her for 15 minutes, I should be capable of living on my own. Can I go off on a minor tangent here? You've been warned. Here I go.
Doctors diagnose autism based on the DSM-IV, a manual that lists a set of criteria. If you meet the criteria (6 of the following 12, for example), then they will diagnose you with a given disorder. Especially with autism, the problem is that doctors don't adhere to the boxes drawn by the manual. The DSM says that there are three autism spectrum disorders (ASDs): Asperger's Syndrome, Autistic Disorder, and PDD-NOS (when someone meets most, but not all of, the criteria for Asperger's or autism). Generally, Asperger's is seen as less severe than autism, although I can guarantee you that the social issues present in a severe case of Asperger's can make that person more disabled than a mild case of autism. In order to be diagnosed with Asperger's, the criteria say that in childhood, the person must show no speech/language delay, no delay in self-help skills, and no lack of curiosity about the environment. Now, I spoke on time, even though my language wasn't conversational. The problem is that I did have a lack of self-help skills and lack of curiosity about the environment. I was, socially, in my own world. However, my psychiatrist's office ignores what the DSM says and, instead, decides that (this is a paraphrase), "People with autism act like there is no one else in the world. They don't care about people. They have very low IQs. They also don't have sensory issues." This frustrates me greatly, because they're drawing their own boxes for the ASDs instead of adhering to the way the DSM draws the boxes.
Why does this matter? For one, I have a thing about things being right. I like things to be right. I want my diagnosis to be right. If you ask anyone who is fairly familiar with ASDs, I don't quite act like someone with Asperger's. The best descriptor, even though it's not a diagnostic term, is high functioning autism (HFA). My severe sensory issues, language problems, significant auditory processing issues, and self-injurious are all more common in HFA than in Asperger's. The other big reason it matters, the huge reason, is for Medical Assistance and SSI. They're much more likely to give it to me if they write "autistic disorder" on that little paper than if they write "Asperger's Syndrome," as ridiculous as that may sound. It shouldn't be that way, but it is. But, the psychiatrist's office likes to draw its own boxes, as so many doctors do, and therefore, they have the potential to really mess me up. Just because I can talk to you in an office for 15 minutes does not mean... does not mean anything. It means that I can talk to you in an office for 15 minutes, not that I can not to you on the street, not that I could have talked to you 2 hours ago, not that I can talk to you for 2 hours in an office. Certainly not that I have Asperger's, not that I can live alone. Quit it with the box drawing, would you?
We're getting there, I guess, with the Medical Assisstance and SSI, too. SSI is sending me for a "mental evaluation" by one of their own psychologists on October 14th. I'm very anxious about it. I have no framework in my mind for what to expect from this 2-hour appointment. What will they ask me? What if I lose my words before we're done? What if they conclude that I don't have autism, and I have something... else? That would certainly mess up my whole application process. Doctors can be really, really stupid, you know. In a way, my anxiety is going to work for my benefit, because it makes my autism symptoms show more. Still, it's not a fun way to feel.
The last piece of the puzzle for Medical Assisstance is a letter from my psychiatrist that explains my diagnosis, my capabilities, and what the doctor foresees for my future. The problem with that is as follows: my psychiatrist doesn't get it. Yes, she specializes is autism spectrum disorders. I've only met her twice, though, and she seems to think that because I can sit and talk with her for 15 minutes, I should be capable of living on my own. Can I go off on a minor tangent here? You've been warned. Here I go.
Doctors diagnose autism based on the DSM-IV, a manual that lists a set of criteria. If you meet the criteria (6 of the following 12, for example), then they will diagnose you with a given disorder. Especially with autism, the problem is that doctors don't adhere to the boxes drawn by the manual. The DSM says that there are three autism spectrum disorders (ASDs): Asperger's Syndrome, Autistic Disorder, and PDD-NOS (when someone meets most, but not all of, the criteria for Asperger's or autism). Generally, Asperger's is seen as less severe than autism, although I can guarantee you that the social issues present in a severe case of Asperger's can make that person more disabled than a mild case of autism. In order to be diagnosed with Asperger's, the criteria say that in childhood, the person must show no speech/language delay, no delay in self-help skills, and no lack of curiosity about the environment. Now, I spoke on time, even though my language wasn't conversational. The problem is that I did have a lack of self-help skills and lack of curiosity about the environment. I was, socially, in my own world. However, my psychiatrist's office ignores what the DSM says and, instead, decides that (this is a paraphrase), "People with autism act like there is no one else in the world. They don't care about people. They have very low IQs. They also don't have sensory issues." This frustrates me greatly, because they're drawing their own boxes for the ASDs instead of adhering to the way the DSM draws the boxes.
Why does this matter? For one, I have a thing about things being right. I like things to be right. I want my diagnosis to be right. If you ask anyone who is fairly familiar with ASDs, I don't quite act like someone with Asperger's. The best descriptor, even though it's not a diagnostic term, is high functioning autism (HFA). My severe sensory issues, language problems, significant auditory processing issues, and self-injurious are all more common in HFA than in Asperger's. The other big reason it matters, the huge reason, is for Medical Assistance and SSI. They're much more likely to give it to me if they write "autistic disorder" on that little paper than if they write "Asperger's Syndrome," as ridiculous as that may sound. It shouldn't be that way, but it is. But, the psychiatrist's office likes to draw its own boxes, as so many doctors do, and therefore, they have the potential to really mess me up. Just because I can talk to you in an office for 15 minutes does not mean... does not mean anything. It means that I can talk to you in an office for 15 minutes, not that I can not to you on the street, not that I could have talked to you 2 hours ago, not that I can talk to you for 2 hours in an office. Certainly not that I have Asperger's, not that I can live alone. Quit it with the box drawing, would you?
Sunday, October 4, 2009
Breaks in the bathroom
What a weekend! I've successively made it through all of my obligations, I'm happy to say.
I got home from work Friday night and said "hi" across the house to the company, who was sitting down to eat dinner. I ran upstairs to change. I worried that they would try to hug me, and took a little longer than I needed to getting dressed. I hate when company hugs me. I don't even like it when my mom hugs me. Hugs are good, but only when I ask for them... and then, they have to be good and tight, or they're just painful. Company certainly doesn't know that, and they always do it wrong. I guess I sent sufficient "don't hug me" signals, because I didn't get any hugs. Whew.
It turns out that my mom's cousin loves cats. Loves, as in, she has 6 of them! We talked cats. We pet my cat. We talked to my cat. We talked more about cats. Cats, cats, cats. It was great. I told her how I love to sit and pet Elsie, but that Elsie sometimes likes to be her own cat. I said that someday I'd like to have a boy Maine Coon, which are known for being super loving and affectionate toward their humans. She said, "Well, if and when I see one in the shelter, I'll get him and bring him up to you." I told her my mom would kill her. Anyway, this company turned out to be alright!
Yesterday, Saturday, was such a long day. I had my morning counseling appointment, during which we discussed the ridiculousness that is the DSM-IV, along with the people who use it. People just don't fit into the little boxes that they've drawn! And then, many doctors like to re-draw the boxes of their own accord, complicating things even further. After a 4 1/2 hour shift at work during which I was sufficiently bored to tears, we went out to dinner at a fancy restaurant. The waitress was fussy at me about ordering not-quite-from-the-menu. They had barbeque fish, and they had grilled chicken; why couldn't I have barbeque chicken? Gosh. Then, because I need to stay gluten free, she fussed about the potatoes. She insisted that they contained gluten, because "potatoes are made of gluten!" Sigh. Okay, thanks for your advice, I'd like a baked potato. I had noise issues in the restaurant and spent a lot of time stimming. My stepdad kept telling me, "Put your hands down." I wanted to tell him to shove it, to be perfectly honest, but I didn't. It's so hard to be out with a dozen people and unable to follow/hear any of the conversation. I just can't handle background noise at all.
I started to text Leigh and did that throughout the meal, and that kept me from panicking about the noise. I stayed calm enough that I even went to someone's house afterward "for dessert" (although I couldn't eat the dessert). I did take one "break in the bathroom," though. Now, that's not to be confused with a bathroom break. I take sensory breaks in the bathroom wherever I go. I always worry that people will wonder what takes me so long. Nothing at all. I just sit and hold my ears for a few minutes. It's wonderful! Amusement parks, restaurants, church... I do it everywhere.
Today, I had my first meeting with the autism group. We met at a coffee shop downtown, where we tookover the bathroom and had it to ourselves to talk. I met a girl who is 25 and has HFA (in case anyone is wondering, "mild autism" or "high functioning autism" describes me best). She has a degree in accounting but works at the dollar store. She lives very close by and works just down the street from me. Her boyfriend, who also came, doesn't have autism. She's really nice, and I hope we can be friends. I also met a guy who is 23 and works at a gas station. He can drive, which he loves. He has Asperger's. He asked me lots of questions, from what I like to make for dinner to what kind of trash bags we use in the house. It was nice to sit and talk to someone, and I really liked him. I met a guy who is 27 and was diagnosed at a very young age with classic autism, told that he wouldn't amount to much. While he was certainly one of the more severe folks there, and his autism is evident immediately, he went to college and now works with an MHMR group as a one-on-one social worker and lives alone. My mom even met another guy's mom, and they got to walk around the shopping district and talk about us. I'm glad my mom got to meet someone. It's good for both of us to know that there are people like me out there, I think.
Anyway, there you have my weekend and how I managed it. I hope yours was as enjoyable as mine. I also hope that it included a cat :)
I got home from work Friday night and said "hi" across the house to the company, who was sitting down to eat dinner. I ran upstairs to change. I worried that they would try to hug me, and took a little longer than I needed to getting dressed. I hate when company hugs me. I don't even like it when my mom hugs me. Hugs are good, but only when I ask for them... and then, they have to be good and tight, or they're just painful. Company certainly doesn't know that, and they always do it wrong. I guess I sent sufficient "don't hug me" signals, because I didn't get any hugs. Whew.
It turns out that my mom's cousin loves cats. Loves, as in, she has 6 of them! We talked cats. We pet my cat. We talked to my cat. We talked more about cats. Cats, cats, cats. It was great. I told her how I love to sit and pet Elsie, but that Elsie sometimes likes to be her own cat. I said that someday I'd like to have a boy Maine Coon, which are known for being super loving and affectionate toward their humans. She said, "Well, if and when I see one in the shelter, I'll get him and bring him up to you." I told her my mom would kill her. Anyway, this company turned out to be alright!
Yesterday, Saturday, was such a long day. I had my morning counseling appointment, during which we discussed the ridiculousness that is the DSM-IV, along with the people who use it. People just don't fit into the little boxes that they've drawn! And then, many doctors like to re-draw the boxes of their own accord, complicating things even further. After a 4 1/2 hour shift at work during which I was sufficiently bored to tears, we went out to dinner at a fancy restaurant. The waitress was fussy at me about ordering not-quite-from-the-menu. They had barbeque fish, and they had grilled chicken; why couldn't I have barbeque chicken? Gosh. Then, because I need to stay gluten free, she fussed about the potatoes. She insisted that they contained gluten, because "potatoes are made of gluten!" Sigh. Okay, thanks for your advice, I'd like a baked potato. I had noise issues in the restaurant and spent a lot of time stimming. My stepdad kept telling me, "Put your hands down." I wanted to tell him to shove it, to be perfectly honest, but I didn't. It's so hard to be out with a dozen people and unable to follow/hear any of the conversation. I just can't handle background noise at all.
I started to text Leigh and did that throughout the meal, and that kept me from panicking about the noise. I stayed calm enough that I even went to someone's house afterward "for dessert" (although I couldn't eat the dessert). I did take one "break in the bathroom," though. Now, that's not to be confused with a bathroom break. I take sensory breaks in the bathroom wherever I go. I always worry that people will wonder what takes me so long. Nothing at all. I just sit and hold my ears for a few minutes. It's wonderful! Amusement parks, restaurants, church... I do it everywhere.
Today, I had my first meeting with the autism group. We met at a coffee shop downtown, where we tookover the bathroom and had it to ourselves to talk. I met a girl who is 25 and has HFA (in case anyone is wondering, "mild autism" or "high functioning autism" describes me best). She has a degree in accounting but works at the dollar store. She lives very close by and works just down the street from me. Her boyfriend, who also came, doesn't have autism. She's really nice, and I hope we can be friends. I also met a guy who is 23 and works at a gas station. He can drive, which he loves. He has Asperger's. He asked me lots of questions, from what I like to make for dinner to what kind of trash bags we use in the house. It was nice to sit and talk to someone, and I really liked him. I met a guy who is 27 and was diagnosed at a very young age with classic autism, told that he wouldn't amount to much. While he was certainly one of the more severe folks there, and his autism is evident immediately, he went to college and now works with an MHMR group as a one-on-one social worker and lives alone. My mom even met another guy's mom, and they got to walk around the shopping district and talk about us. I'm glad my mom got to meet someone. It's good for both of us to know that there are people like me out there, I think.
Anyway, there you have my weekend and how I managed it. I hope yours was as enjoyable as mine. I also hope that it included a cat :)
Friday, October 2, 2009
Trying to be flexible
We have family (my great aunt and her daughter) staying with us this weekend. That means that someone is staying in my room, and I'm sleeping on the floor of the spare room. The last time we had people over, we tried having me sleep on the couch, but I couldn't manage without a place to escape to. Hopefully having my own area, even if it's just a spot on the floor and a door to close, is enough to keep me calm when I get overwhelmed. I get really, really stressed with people in my house and things being so noisy and disrupted.
It's a busy weekend, too. I worked this evening. Tomorrow, I have a counseling appointment at 9am, then work from 10:30-3, then a big dinner outing with the family. Then Sunday, we're getting up and going out to breakfast, and then my mom and I are going out to meet the autism group for coffee.
I hope I can do this. I really hope I can. So far, Elsie is sticking in the same room as me, which helps a lot.
It's a busy weekend, too. I worked this evening. Tomorrow, I have a counseling appointment at 9am, then work from 10:30-3, then a big dinner outing with the family. Then Sunday, we're getting up and going out to breakfast, and then my mom and I are going out to meet the autism group for coffee.
I hope I can do this. I really hope I can. So far, Elsie is sticking in the same room as me, which helps a lot.
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