Monday, June 29, 2009

Moving right along...

I found out today that my last day at partial will be Friday, July 10th. That will make 3 weeks total. It seems that most people are there closer to 6 weeks, but I think I'll be totally ready to be out of there after 3. 99% of the group therapy revolves around terrible family lives, difficult kids, and trouble with spouses. I can't even begin to relate. I'm still needing breaks every hour-ish. All the talking just turns into noise and starts to drive me insane.

The director realizes all of this, that the program is far better than nothing but not exactly right. So, she is going to get me in a group specifically for autism. It's brand new, and it starts the third week in July. It will be more like once or twice a week for an hour or two, rather than everyday.

I had a job interview at Giant Eagle (grocery store) on Saturday that I think went well. They need someone part time in the photo lab and in the childcare area... exactly what I wanted to do! Even at part time (16 hours per week), after one year, full health benefits! Yay!

I have always thought that autism was completely inseparable from frustration. I have told my best friend, many times, that I HATE autism. But really, what I meant, was that I hated how I felt: frustrated. I definitely do not think that medications are the answer to every problem, but I also think that it is ridiculous to expect someone to reason normally without the correct balance of biochemicals in his brain. I am so grateful for this new medication (Geodon). I'm on the smallest possible dose (20mg), and it has made a world of difference. I have had two outbursts in the past 8 days, rather than several each day, constantly trying to stave them off. I never thought that I could have autism minus all of that frustration. To be honest, I don't know that I mind the autism so much anymore. I certainly don't hate it. It is probably still the root of the frustration, because the problem that often sets it off is not being able to get things out so that someone understands me, but if the frustration is lessened, the other aspects of it aren't nearly so bad.

My best friend is coming back from her month-long mission trip to Mexico on Friday, and I'll be honest... I'm excited! I know that she is needed there, but I like her too much for her to go away for a long time. She lives 4ish hours away, but at least when we're in the same country, we can text and talk on the phone. Granted, I hate to talk on the phone, so it's mostly texting. Anyway, all of the recent craziness has been a little tough without her around. Last year, she flew home from the same mission trip on the 4th of July and got to watch fireworks from above... I think that's really neat!
After a lot of furniture changing and then rearranging and organizing, Elsie had to check out my "new room." She definitely approves... the kitty paw prints all over the glass top of my end table and desk prove it!
So, I'm just wondering, here... if you read this, leave a comment? I'm wondering if I'm writing to myself, or if anyone is reading. Either way, I'll still be writing, I'm sure.

Wednesday, June 24, 2009

Just an update

I'm being somewhat cautiously optimistic when I say this, but at least for now, things are going well.

I spend 5 hours a day, 4 days a week, in a partial hospital program. The "doctor" in charge is actually a Phd psychologist, and she has put her heart and soul into this program. The psychiatrist spends at least 30 minutes, everyday, with every patient. He doesn't just throw meds out left and right; he tells people to go golfing and to go to the library and get a book, and read it (not random suggestions, but ones that are specific to those people's needs). There are two psychiatric nurses. I especially like one of them, who will make jokes with me and laugh when I joke with her.

There are 10 or 12 people in the group, but a few are missing on any given day. My favorite person from my inpatient stay, a mother of 3 teenagers, is there, which brightens things up. 8 or 9 of the people are bipolar, the others severely depressed. It leaves me... often confused. I don't participate in 98% of the conversation. Today, we each had to introduce ourselves to a few new people; who we are, what brought us there. I told them my name but wasn't sure what to say about what brought me there. Someone said, "Lydia is our comic relief. Not that what she says isn't important, but she's silent over there for 3 hours, then knows just what to say to crack us all up." Glad I can help :)

Anyway, everyone there seems to think that the former BPD diagnosis was insane, and that autism is right. I feel validated by that. It allows me to say what I feel, which is that I'm not broken, I'm not "suffering" from anything. That said, my "treatment goals" are things like participating in the conversation in the group at least x times per day; staying attentive to one other patient per day and jotting down notes for at least 30 minutes; writing down the feelings that I hear mentioned and the contexts; getting to and from the program sucessfully on the bus (I took a detour the other day...); improving eye contact (currently by way of near-constant reminders); increasing time spent in the room with everyone (it can be near 3 hours straight... right now, I get up every 45 minutes-ish, go in the tiny 'library', turn off the lights and sit in silence. Then, I can go back and stand to listen again.)

I can't BELIEVE how much they get it. They get it! They're not making me "be" depressed or anxious or this or that... they are truly looking at where I'm at and what they can do to help. They helped me to create another new system for remembering chores that is really helpful. This is... wow. What great practice, to be in a situation where I can work on these important skills without too much pressure. Pressure makes things worse. It's great.

That said, I am now also on Geodon... an atypical-antipsychotic usually used to treat bipolar disorder and schizophrenia. It is in the same drug class as Risperdal, which is frequently used to help people with autism deal with frustration less aggressively, but Geodon does not cause weight gain as Risperdal does. So far, I take it once at dinner, since I was losing it more evenings than not... and so far, only one outburst, which was in the afternoon before I'd taken it that day. So far, so good.

Sunday, June 21, 2009

What I Wish You Knew

I wish you knew that, truly, the last thing I want is to hurt you.

I wish you knew that I want to make your life easier, not harder.

I wish you knew that I want to be the "normal" daughter you wanted.

I wish you knew that I can't be that daughter.

I wish you knew that I don't want you to fix me. That I like who I am.

I wish you knew that I NEED you to be supportive.

I wish you knew that I don't repeat the same conversations to dwell or drive you crazy but because I find a lot of comfort in that.

I wish you knew that I desperately want to do understand. But I don't.

I wish you knew that I know just how much I burden you.

I wish you knew that I really, really am trying my best.

I wish you knew that I do like making progress.

I wish you knew that when you push for it too fast, that I shut down.

I wish you knew that, right now, my emotions are often out of my control.

I wish you know how much I hate that, how much it scares me.

I wish that you believed me.

I wish that you would believe in me, too.

Friday, June 19, 2009

Autism, by any other name?

During my inpatient stay, OCD and social anxiety were the diagnoses thrown around in my presence.

Behind the scenes, and what they told my parents, was that I have Borderline Personality Disorder. That implies that even my autism diagnosis is some kind of ploy on my part... for attention, I guess? BPD is a diagnosis that carries a stigma, that many clinicians do not treat. I was upset because, knowing the criteria for BPD from a psych class two years ago, I could not see how I met them. I know that self-awareness isn't one of my strongest suits, but if I was the things that a BPD diagnosis requires... then I didn't know who I was at ALL. I was extremely upset when I found out about this.

I went to the partial program today with a letter that I had taken a few minutes to write to the psychiatrist. I am sometimes very poor at answering questions verbally, so I gave a little background and explained what I hoped he could help me with (the IT). I didn't want to count on my shakey ability to explain things.

The doctor at partial read my notes, read my letter, talked with me for a bit and said that there is no way that I have BPD. He said that whether they call it autism or Asperger's or non-verbal learning disorder is neither here nor there to him-- that he wants to treat the current problem.

Can you say relief?

Knowing that I have autism is validating. I'm not crazy or stupid or lazy (most of the time!). It is not due to being spoiled or lazy that I can't do things that most people my age do easily. Autism does not mean that something is broken, if you ask me. So please, don't try to FIX me. When they were saying things about personality disorders... now, that is broken and needs to be fixed. For the time that I have known that I have autism, I never felt broken. I don't want to feel broken, because I'm not. So, if anyone wants to know why "which label" matters... right now, for me, it's because I'm kind of hypersensitive and defensive about other people trying to fix me. Certainly, I need help with things and I need to learn new skills. I may be developing those skills more slowly than most. But I have the capacity to learn them, and in time, I will.

As far as the program goes... not exactly appropriate for me, but that's okay. It's a lot of group conversation in which I am completely lost. Also, most people there (7 of the 9) are bipolar so much of the discussion centers around preventing and managing manic episodes. I can't even relate, so it's hard to stay focused. But hey, it's structure, the doctor seems really good, and it gives them the chance to monitor my meds much more frequently than they could with monthly appointments. I'll take it, and try to stay patient in the process.

Wednesday, June 17, 2009

Eight days.

I've been debating back and forth, up and down, and back again, about whether to blog about the past eight days of my life. But you know what? Where I was and why I went there is nothing to be ashamed of, so here it goes.

Psych ward.

My psychiatrist switched some meds around recently, and as the old ones had word off but the new ones had not yet kicked in... I was one anxious girl. My head was SO foggy, and everything was scaring me. The moments of IT (see older post) were more and more frequent, and in those moments, I'm not exactly sure what I might do. I asked my mom if I could be at the hospital, just to be safe until the meds started working. It took some pushing, since I hadn't made a suicide attempt. How ridiculous is that? Unless I had actually MADE an attempt, my doctor said that it wasn't necessary. How about let's stop things before they get there?!

So, I went. I was incredibly well taken care of while I was there. It gave the SSRI time to kick in, and my Buspar (for anti-anxiety) got tripled. The doctors completely failed to address or even to acknowledge the IT attacks... the times when I am angry, frustrated, anxious, out of control and not at all myself. If I were ever hurt myself, someone else, or someTHING... that would be when it would happen. Not in a million years when I'm normal me. So, I agreed to spend the next 4 weeks (MWF) in a partial hospital program. I am hoping that the doctor there will give some new meds a shot to help those times... maybe a mood stabilizer or anti-psychotic. Those are scary words, aren't they? But those times scare me so much, and I want them to stop.

I'm frustrated that autism is being treated as strictly psychological. Doctors kept telling me that I "can't" have autism because I can speak, because I'm not sitting in the corner flapping my hands, because 'they know autism when it walks in the door, and you don't have it." Then, they get frustrated with me when I can't tell them how I'm feeling. Ughhhh. These doctors, who I saw for 5 or 6 minutes a day. I know-- they can't know. But I do feel pretty invalidated.

I see that a lot has been happening in my blog world since I was gone... I am not ignoring you! I read all the comments and will get back to you all in the next few days.

So, the past eight days have been sometimes terrifying, sometimes hilarious, but mostly reassuring. The people who work there are incredible. I was safe, and I was somewhere that med changes could be made more quickly. All in all, I'm very, very glad that I went. And now, I'm very, very, VERY glad to be home with my kitty!

Monday, June 8, 2009

Can you see it?

Sometimes, I swear you can see autism in pictures. I have to wonder. I just see... me, doing what I did. For your enjoyment, here's a smattering of the first few years. I wasn't a happy kid. Do you see cranky and spoiled, or do you see autism?

3 months

5 months

16 months

18 months

18 months (that's very typical)

22 months

2 years

3.5 years

4th birthday (yes, crying)
What do you see?

"My place" on the spectrum

Just to clarify, not that I thought anyone was confused...

I worry that I'm faking. That autism is just yet another wrong diagnosis, that it's not neurological but psychological, that I'm just lazy. I want to be "normal." I want to be thinking of boyfriends, jobs, homes, and going out. I don't go out. I don't see friends. I have my mom, my aunt, and two or three close friends who I wouldn't trade for anything. But still, I want to be NORMAL. And it seems to me that, if it's not really autism, that normalcy is within my reach and the only reason I don't have it is somehow due to my choice.

The first autism-spectrum diagnosis I got was Asperger's (before that, I'd had the typical depression, anxiety, social anxiety, OCD, etc. ones). On my good days, if you talked to me for an hour, you might think Asperger's made sense (I can have conversations, I might even look in your general direction, I might stall out a little, and I'd really rather talk about my cat than anything else, and the stimming is still there, but controlled). On my very worst days... well, you wouldn't talk to me for an hour, because I wouldn't be responsive, but I act more like someone with moderate autism (more obvious stimming, a lot less focus, much more in my own world than in yours). Even when I'm not talking and not responding, even when you don't think I'm there... I want your company! I'm all the same person, so just treat me like you normally would. I kind of worry that anyone reading my blog will think that I'm one of the "fakers" because I seem normal in writing. I often have long conversations with a friend just by typing when I can't get it together to speak well or understand others speaking to me. My writing is almost always in tact, and, I think, comprehensible. The words are in my head, and when I write, it's like cornering and capturing them. When I try to speak, they float around, and sometimes I can peg down the ones I need. You can read this and see it as one continuous thought, but I might have taken 2 hours to write it out.

So, where am I on the spectrum? Professionals call it high-functioning autism. My parents call it "Lydia land." I don't really know. As long as there are cats, though, I'll happily stay there.

Sunday, June 7, 2009

Work, or the lack thereof

Looking for work = sucks. A lot.

I just graduated magna cum laude from a top college, degree in Elementary Education. Important note, though, is that I am NOT certified to teach. I cannot be a teacher. I was unable to complete my student teaching... I only lasted about 2 weeks. Can you say sensory and social overload? It was way beyond me. I knew going in that it was NOT going to work if I didn't have some accomodations, but since the school wasn't willing to work with me, that's exactly what happened. That said, I do have a college degree.

So, up to this point, I've put it 54 job applications all around the city. Due to seizures, I can't drive right now, so I have to be local enough that my mom can leave work to drop me off/pick me up from work. Places that require a lot of socialization/conversation just wouldn't work, as I kind of shut down and stop talking after an hour or so of that. My ideal job is the local pet store, not a chain, where I got my dear kitty. I would also LOVE a bookstore (good call, Jess!), but nothing seems to be hiring. Right now, my best hope is Walgreens. It's very close to home, fairly quiet, and small enough that I won't get distracted/lost like I do in grocery stores. I'm hoping for maybe 20-25 hours and to work up from there. Hopefully, I will be able to stay on my parents insurance as a "disabled" (don't get me started on that word!) adult and be able to maintain part time for at least a few months. Full time would result in a very non-functioning Lydia.

On my best days, I could definitely do things like teach in a pre-school or something similar. But on the bad days, my focus and my ability to respond to people is so bad that it would be hard to work at all. The more I push too hard, the more bad days I have, hence not wanting to jump into full time work. I'm hoping that for the next year or so, I'll be able to get used to working consistently at a job that I can do on ANY day. I'll keep my brain occupied by reading in my free time. Then, once I have worked up to full time and know that I can handle it, I want to go back to school so that I can do something in the the sciences/research/working with animals, something that allows me to do my own thing without a ton of interaction. To be honest, that's actually my mom's plan, that I completely agree with... but I couldn't really come up with a plan like that on my own. Oh, executive function... how I want you.

On another, unrelated note, Elsie's clicker training is... making her fat, and not much else... so far. She already knows a handful of words/phrases (upstairs, shower, what's the kitty say?, bedtime), but I want to see if she can learn to give the same response, every time. As long as she's getting treats, she is up for it!

Saturday, June 6, 2009

Can't. Contain. Myself.

There is something that I absolutely must get out of my head.


Yes, they are cute when they're puppies, but then they grow up. Yes, they require long walks and baths and feeding and picking up poop and grooming. Yes, yes, yes. I'm not 8 years old; I am 21. I am capable of all of those things, if they are written on my schedule board and part of my everyday life. The cute little puppy stage is great, but what I really want is a companion.

I want to go for long walks, twice a day, everyday. I want to sit on the floor and read with him. I want to work hard to teach him sit, stay, wait, okay. I want to socialize him with other dogs from day 1. For the next 10 years, I will have a best friend. MY dog. I will care for him because he will care for me. People don't make any sense sometimes, but animals always do.

I've NEVER asked for a dog until a few months ago, when the answer was, "No way, not in my house. Do whatever you want when you move out." Okay, but in the foreseeable future, I won't be moving out, because I go from "hanging in there" to "completely disfucntional" when I'm alone for any period of time. Living on my own is not an option. It almost feels like I'm being punished for not being able to live on my own yet. Given that I do the vacuuming and cleaning, the shedding issue should be, well, a non-issue. I would not get the dog until I have a steady job, so the food and vet bill will be entirely on me. I will walk him and brush him daily. So why, WHY, is it so horrible to have a dog in the house? It would certainly mean one much less monster-feeling, sometimes monster-acting, daugther.

I'm trying so, so, so hard to contain myself and not even bring it up to my mom. But being home all day, everday, by myself doesn't help, because I do get lonely here. I don't know if I can keep myself from exploding it until I move out. Sometimes, it causes IT (er, see previous post?) to start coming out, because I just can't keep it in. But mom said no, and no means no. I need to be patient. Being patient has NEVER been so hard.

So, now that YOU are convinced that I should have a dog... well, that gets me nowhere. I'm trying to stay busy by attempting to clicker-train my cat :)

Friday, June 5, 2009

What's the word???

There's this... thing... that is ruling my life. I can remember it back to being two years old, and although it has been better at times, it has always been there. I'm not trying to be deceptive here. I really don't know what that thing is.

Frustration, maybe? Anxiety? Um... anger? I don't know. I can't figure out what causes it most of the time... sometimes, being bumped unexpectedly, or someone else being in the kitchen while I am trying to do things can set it off. Other times, it seems to come out of nowhere. It makes me cry, or yell, or want to scream. Sometimes, I even feel violent, usually toward myself. WHY?

I know what makes it better: medication, animals, or to an extent, my weighted blanket. I prefer the animals route, but at times I resort to the medication (a fast-acting, low dose sedative). But what is it?! How can anyone help, if I can't tell them what it is or even what it feels like? It does change my behavior, I think, so my mom may be able to tell when I feel that way... but she doesn't seem to pick that up very well. If I can't tell them what causes it or what it is, how can anyone make it go away?

I think that "frustrated" is the word for how I feel about the situation. I'm wondering, though, if autism is the reason that I can explain it. Beyond "I feel bad," I'm stuck. Recent changes in my medications make me think that the increase it IT could be related, but who knows. Certainly, not I. I'm so close to just begging the psychiatrist to FIX IT!! She is an autism specialist, shouldn't she know what IT is?!

Sigh. In the meantime, where's my kitty?

Thursday, June 4, 2009

Catching Up

How I Got Here
I grew up with a lot of frustration and misunderstanding. I was a tantrum-ing, has-to-be-my-way, zero-to-sixty kind of kid. Academically, I did extremely well and was in the gifted program by the end of kindergarten, so no one really looked into the issues I did have. School reports say that I would only do what I wanted to do, when I wanted to do it; refused to work to my potential; lazy, forgetful, disorganized, inattentive. I had been diagnosed with depression, anxiety, and OCD and ADD (minus the H) were mentioned, but no one was quite sure what the problem was. I was annoyed, because I knew that I wasn't depressed. I didn't know how to tell anyone what was wrong, so it came out as shutting down or melting down and being angry with my family for not understanding.

Finally, at 20, I was diagnosed with Asperger's. Recently, that was changed to Autistic
Disorder. Whether or not I had a language delay is up for debate, because while my mother insists "you were completely normal," looking at old home videos, I most certainly was not. Aside from some echolalia, I did not speak (at 2 and 4 years old).

Where I Am
I am living at home with my parents, trying to get my feet on the ground. It's a struggle for me to do the basic things I need to do to get by, like taking my medications and remembering appointments. My mom is helping me a lot. Health insurance is the Big Thing right now. I am, as of the other day, off my father's plan and have to fend for myself. Right now, there is no way that I could manage a full time job. Heck, right now, I can't FIND a job! I can stay on COBRA, but it's really expensive, and without a job, that's pretty tough. My mom will pay if she has to, but I'd hate that. We're all hoping that I can stay on my mom's insurance through a waiver that allows a "disabled" (hate that word!) adult to stay on the parent's insurance. That would be ideal. In the mean time, I continue to desperately search for a job that is 1) very close, as I lost my license due to seizures therefore needing rides, and 2) something I can manage (i.e., grocery stores, most restaraunts are completely out because I would be overloaded and overwhelmed).

Where I'm Going
In the next few months, I hope to find a job and get used to working 20-25 hours a week. I hope to get my psych meds corrected, so that I'm not such an anxious, frustrated mess. I hope to get OFF Klonopin, which calms me down but makes me "act autistic." I'm always right on the edge of keeping it together, so... I hope that I can.