Ready, Set, Disney World!

This is Tigger. He belongs to Leigh, and he is pretty darn excited (he was even climbing up over my mom's computer screen while I was trying to print something!). As of tomorrow, Tigger gets to go back to his birthplace in Disney World! Tigger stayed with me this summer, and he's coming with me to Disney to get his picture taken all around his home town. I may or may not get a chance to blog from down there, but either way, I'll be back home and back to blogging for sure in about a week.

In the meantime, the kitty will be holding down the fort here at home. You all better hold it down here in blog world!

Reframe?

Going to my group today, my biggest fear was that I wouldn't fit in. That kind of did happen, only, not in the way I expected. I expected that I was somehow be completely different than these people.... not autistic at all, maybe. That I wouldn't have anything in common with them. That's not what happened.

There were only three other people, all men besides me, all older than me (two in their late 20s, one in his late 40s). They all have Asperger's, and if I may say, they are as stereotypical Asperger's as it gets. One of the guys also has Tourette's and therefore a vocal tic that is "unrelated" to his Asperger's. When it comes to the autism spectrum, the doctor said that I am considerably more severe than they are.

Whoa. What?! Me?! I thought that I was really, really, really mild. But these guys don't have problems with eye contact. They were discussing things about body language that I didn't know existed. They don't have any sensory problems. One is married, with children. None have problems with meltdowns (?!) or stimming or self injurious behaviors. I don't want to discount their struggles, but I'm left wondering, where is your autism?!

So, I guess I have to reframe my idea of my own autism, I guess, if what they have can also be considered on the spectrum. I'm just a bit confused. Anyway, today we talked about body language (I was lost), making eye contact (it makes me hurt, so he had me practice watching his mouth, but I still kept looking away, darn it), melt downs (guess the other guys don't have those or even understand what they are), how to show that you're interesting in a conversation, sensory overload, how other people show that they're bored of listening to you... basically, went through many of the traits of Asperger's and how the affect each of us. These guys did not talk. I've realized that I'm somehow more outgoing than many people with autism... not always engaged with people, but I do like to talk to them, sometimes. Just, don't you necessarily try to talk to me, if I don't know you, because I might ignore you. It's gotta be on my terms :)

The doctor asked each of us what we'd like to be able to do better in social settings. For me... when I go out, I can't just go out with a group of people unless one of a few certain people (i.e., my mom or Leigh or someone) is going. I need someone who I can really depend on in case I get confused or melt down when I'm out. I'd like to be self sufficient enough to be able to go out to eat with a group or something and handle the little things that come up well enough not to have to depend on someone. Also, I kind of need that person as a social "filter," so that I can communicate with the other people. Anyway, if I could even get moving in the right direction, that would be great.

By the way, Disney would is absolutely INCREDIBLE about handling even last-minute dietary restrictions. We set up a few reservations... it was taken care of within four hours of the initial e-mail: the reservations, dietary notifications, forms to fill out, emails about what I can eat at what places at each park. An awesome lady named Brenda does a great job handling it all. This huge places, which has 60,000 employees, can handle individual dietary issues like that, and such a fast turn-around! And, I can eat brownies, pizza, ice cream, and chicken tenders at dozens of places at the parks down there, not just one or two things at a couple of random spots! Ahhhh! Not that I'm excited or anything :)

New group

So far, GFCF is going very well. My blood sugar crashed in the middle of the night, and I absent-mindedly threw together a bowl of cereal with (gasp) regular milk. I have been paying the price for the past 18 hours! I guess after getting a break from it, my poor stomach just can't handle the stuff. Ugh. I like how I've been eating. For example, today I had GF cereal and almond milk for breakfast, a few peanuts and dried figs as a snack, two eggs and a piece of GF toast for lunch, then brown rice with 1/2 a chicken breast and green beans for dinner. Yum! No "cardboard" here!


Tomorrow starts the new autism group. When I was discharged from partial, they discharged me to this group. I guess it's mostly social skills-based. To be honest, I have very little idea of what to expect. I know that it's 8 people, 6 of them men, mostly mid- to late-20s. I don't really know what we're going to do or talk about. I'm really nervous.

What if I don't like autistic people? What if I'm nervous around them? What if I don't know what to say? What if, and please don't let this happen, what if I'm still the one weirdo that no one knows what to do with? What if no one likes me? What if I don't fit in?

I never seem to fit in. Why would this be any different? I'm so, so hoping that it is.

Going GFCF (cow free, that is)

I know how much stock may people put into the connection between autism and gluten/casein. I've never met someone who's done "the diet" for that reason, though, so I can't really say what I think. Before I go too far, let me just say that the main reason I am getting rid of gluten and cow's milk is NOT due to the autism.

I've been massively, head-to-toe itchy since... forever. Also, I've had stomach cramps and all sorts of other nasty problems for the past 6 or 8 years, getting increasingly worst. I've been biopsied for Celiac, which came back negative. I do have GERD and take hefty doses of some medications for that. I was hospitalized last summer with severe stomach pain/swelling, GI problems galore, and severe regurgitation of every bite/sip I took. No real answers, except for some med changes that helped the acid reflux to calm back down.

My nutritionist has mentioned several times that "when things settle down" we needed to think about kicking the gluten and see how my stomach did then. Well, this, folks, is as settled down as life gets. I think it's time. I picked up a few GF things (pasta, pancake mix, cereal) and almond milk (because I am very aware that at least straight milk and ice cream is a problem, although some cheese and butter is okay)... so far, all are very good.

So, for the next week or so, I am going to figure out how to get the gluten out, what that looks like. I'm not going to do it 100% just yet, as I'm going to Disney next week, and that's a terrible place to start going GF! Then, when I get back, GF it is.

Now, I'm mostly hoping that my itchiness calms down, and also the GI problems. However, if my attention gets a little better, or some of the other things like that? You won't hear me complaining!

Anyone out there tried it, for any reasons (autism, celiac, allergies, other)? Thoughts?

Not people

I'm a little exasperated. No, I can't always say when I'm sad, but exasperated is one that comes fairly easily to me, in words. It may even come first.

I want to be around people who get it. People who getting, I long ago deemed "not people." I'm getting worn down from trying so hard to be normal, act normal, look normal, seem normal... I just want a break, and I want to be me. And it's one thing to be me in my own world, which I do every day, but when can I be me in your world, again? Yes, I have autism, I know, and I know that's supposed to mean that I don't want to share anything with you, but... oh, I really do. I try to share my love of my kitty with my mom, but all I get is, "I don't want to pet the cat." I want to share joy with people who get it, with some not people, for a little while, and feel like I fit right in, without having to try.

Packing List

I'm obsessing about what I need to bring to Disney World. Oh, yes, I'm obsessing about which shorts and shirts and whatnot, but mostly I am obsessing about what I need to make sure that I don't melt down. I will be with my mom and my oldest sister (27). My mom would be upset my a melt down, and my sister just would not tolerate it. Her thought is that the crowds bother everyone, and that everyone else can deal with it, so I need to learn to deal too. ...More on that in another post. I have been to Disney before, in October for 3 days with Leigh (well, with the college marching band, but mostly just with Leigh), and I was texting her from the next seat by the end of the trip because I couldn't get words together. It was rough. Trying to avoid that this time.

Anyway, here is my list-in-progress for what I need to stay sane admist the chaos.

1. Smallish backpack to hold everything to stay with me all the time
2. Multiple water bottles to be filled with ice in the morning (I drink water like it's going out of style).
3. I usually have a squishy, spindly ball with me... but it's broken. As a replacement, I got a Tangle Jr. (http://www.seriouspuzzles.com/tty1800a.html). I'm going to connect it to the strap of my backpack so that it's always within reach.
4. Ipod and sunglasses. Obviously.
5. Earplugs.
6. Hat.
7. I bite my hands, knuckles mostly, a lot more when I'm more stressed out. I've tried chewing gum, but it doesn't work because gum isn't hard. I don't like ice. I finally broke down and got a chewy tube. It's just a red stick; it almost looks like candy. I don't intend to bring it anywhere with me or anything, but for chilling and watching tv or late at night... my knuckles might someday straighten out again. I feel pretty embarrassed, but other strategies just weren't working. Something acceptable to chew on would be such a relief.
8. Band aids in case I get a blister.
9. Back up site changes for my insulin pump, juice boxes and snacks in case my blood sugar is low, etc.
10. Maps of wherever we are and wherever we're going. I can't read maps, but I need to have them.

Any other suggestions?

Headed for a Meltdown

Antecedent(s): My parents were talking about... something I didn't understand... at dinner. When there was a pause, which I took to me "we are changing subjects," I brought up that I got a brand new swimsuit today that I really liked. My mom was with me, but I was telling my stepdad. They then went on with whatever they'd been talking about, completely ignoring that I'd spoken. This happens fairly often, and it really bothers me because I never understand why! I brought my dishes in (we'd been sitting outside) and decided to watch some tv. Well, the window are open, and there was noise outside. I can't follow the tv for squat when there are other noises. My stepdad then went to the basement and was making a lot of noise doing things with his motorcycle (not loud, but distant loud, if you know what I mean). The dog was barking. My mom was vaccuuming upstairs. The phone rang. Noise. Noise. NOISE!!!

I have a problem with scratching my hands/arms, from my elbows down. I scratch until I bleed, and then I scratch some more. It doesn't hurt one bit. I have scars, and I hate them. But in that moment, I'm either unaware that I'm doing it or so relieved that I don't care if it will scar. I know that it's far worse when I'm stressed. It was particularly bad for a while this winter, right after I had to drop out of student teaching, had to take D's on my transcript, etc. There were hundreds of conversations that went something like this: "Stop scratching." (That'd be Leigh.) Whine (that'd be me). It's so annoying to be told to stop. I've been doing it for many years with particularly bad points on and off, and very recently, I've realized that the real cause is the stress.

Anyway, as the noise built up, so did the itching. By the time the phone rang, I was scratching my hands to pieces, tears in my eyes, about to go over the edge. I texted someone from partial, M, someone who is really helpful with ideas, that I was about to lose it! She said, "breathe." I got out my Ipod even though I was in the house, popped an extra allergy pill to calm the itching (it DOES help, even though I tell my mom sometimes that nothing works), and considered taking a Klonopin if things didn't settle down. My mom came down and asked me what was wrong. I said the NOISE was driving me crazy, and couldwepleasegotoDee'stoseethedogsnow? Dee, a true angel in the form of a lady my mom's age who lives down the street, has 4 adopted dogs and an adopted snake, all of whom she loves dearly: her kids, she calls them. I told my mom that I wanted the dogs, please. Well, Mom called Dee, who was away this evening. Okay. The F word, right, Jess? Flexible. Ipod back on. I got Truby, our dog, and plopped her on my lap.


And here I sit... still trying to calm down and wait it out...







PS- Truby was happy to be held, too, since she was less than thrilled with the commotion. Sorry if I look a bit frazzled. I was. I am.

Adventures in Busworld

I feel like I spend every hour that I'm not sleeping educating someone about autism. Of cours, I don't say the word "autism" daily, but that's what it is... teaching my parents how to deal with me. In some ways, things are better at home since I've been more explicit about what I need, when and why, but I get tired of it. Sometimes, I'm too in my own world to be able to do that, but they can't understand why I'm more "with it" some times than others. I want things to be more natural. I've been fussing and snapping and crying a little more again, lately. That wears me out.

I saw a new psychiatrist today. A child psychiatrist, actually, who specializes in autism. She definitely got it. She couldn't believe that it took me so long to be diagnosed... she said "it's pretty obvious, honestly." Not sure how I should take that. Anyway, meds are pretty much going to stay the same for now, since my new anti-migraine/anti-seizure meds should have the same effect as increasing the Geodon. That's the hope. She wants to do some neuropsych testing, because she's concerned about my attention and executive function. She said it's a lot of sorting, organizing, repeating strands of numbers. I really, really, REALLY hate doing those things!

I had to take the bus to my appointment today. My mom asked me to check when the bus came. Usually, she'd do it for me, because I seem to have trouble reading the bus schedule. But, I did it this time... 12:24. When the bus hadn't come by 12:40, I knew that I had misread it. Sure enough, the bus came downtown at 12:24... wrong way. My appointment was at 1... uh oh. I had to wait on the side of a busy road for what turned out to be over an hour, make phone calls from said side of busy road, and stay calm, all by myself. All okay, except for the staying calm. I started to cry twice, but I sat down in some shade, which helped. Ipod and sunglasses on, of course. Texted someone to try to help me get a bus schedule online (no, I didn't have it with me), and texted Leigh to say that I was on the verge of losing it. No one could get the schedule. The office said that as long as I was there by 1:30, no problem. Got on the bus at 12:55, got there by 1:10, so all was well... I was just a little upset. Leigh reminded me that being upset on the bus wasn't going to hurry it or change anything, that the office had already said it was fine, so just to have my iPod and sunglasses on and ride. True enough. I got there, and the appointment was good. Liked the doctor, finally, after FOUR psychiatrists! And, thankfully, got home without event.

See how excited Leigh and I were when we got to Disney after a 24 hour (to the minute!) bus ride? I am, quite possible, even MORE excited to be going back on the 31st!

Excuse the fact that it was raining when this picture was taken. We certainly didn't mind it :)

Now, prepare yourself for pictures. I am going to the zoo tomorrow with B, from partial, and I'm pretty darn excited about that too! The following are from Disney too.

How I do it

With little ones, you use picture schedules and fanny packs full of sensory toys. But what happens when you're 21?

This is the back of the basement door, which is in the kitchen. It's Lydia's organization central. It has: my calander white board, my weekly chore cards, my white board, and my blood sugar chart. Now, don't think that I'm organized, or anything. These systems all depend on one another for anything to get done... one reminds me to do something on the next one, and eventually, the end of the line reminds me to do what needs to be done. Does that make any sense?

Here's a close up of my calander board. Red is appointments, blue is blood sugars and insulin doses (I've had Type I diabetes since I was 3). Every Sunday, my chore cards remind me to transfer the blood sugars and insulin doses to the monthly record sheet. The cards also remind me to write my upcoming appointments/work schedule on the board. I do 4 blood sugars a day, usually, so they are written as breakfast, lunch, dinner, bedtime. The magnets line up on the day, and each time I do one of those things, I move them to the next day (er, in the case of this picture, because it's Sunday and Monday is this past Monday and thus full, I stuck them up top). The magnets are my grown-up version of a picture schedule, I guess. They are the things I do every day.



Here's Sunday for the chores that I need to do today. There is a list for each day, and I flip the cards each night before I go to bed. They gave me the idea at partial, then my mom made a list of what she wants me to do each week and which days to do each thing. Then, I made them pretty, so that I could at least get something enjoyable out of it :)




I also have a certain set of things that I have to keep with me while out in order to keep me sane, others that stay at home but I couldn't live without. First, the cats. The cats are 10 little laminated pictures with a key ring in them so that they flip around, like the cards above. My cat, Leigh's cat, Leigh's former cat, other cats I know and love, and two of just really cute but unidentified kittens. When I'm out in public and super stressed, out come my cats. I like to have a quarter on me at all times to spin and stop, spin and stop, spin and stop. I've become very attached to my iPod, and lately, my new sunglasses. Between the two, they don't do a bad job of shutting the world out. Also, people don't talk to me when I have both on, which is great! I also like to keep a squishy ball, that I don't quite know how to explain, with me, to keep my hands busy. When I'm around the house, or at college if I was visiting a friend's room, I have the other cats... a 6x12ish rectangle of fabric filled with a few pounds of rice. I looove the weight of it! I have a 15-pound weighted blanket that I sleep with, and if I get upset during the day, sometimes I hide under it for a little while. I have three books (a cat dictionary, a Big Cats book, and an animals dictionary) that I look at over, and over, and over, and over, that seem to help me calm down.






And this is Truby, the dog. She's a Cavalier King Charles Spaniel. She is smaller than average, only about 12 pounds. Yes, she is a forever puppy and extremely cute. She's not all that intelligent, though, she's delicate, and she's terrified of everything. I like her, but she is very much my parents' dog. I want my dog. Anyway, she's adorable and sweet, so here she is for your viewing pleasure.

The IRONY

The irony drives me crazy (you know, for as often as I say that things "drive me crazy," you'd think that I'd be nothing short of insane by now....).

Story 1: I love church, but I hate to go. I know, don't try to make sense out of that, but both statements are completely true. I know how much I need it every week, but every week, I say that I don't feel like it. It's so much sitting still, the lights in church are weird, I don't like the air, so many people, people who try to talk to me... blah. And an hour and a half is quite a lot of listening for my ears. One week, I was having a particularly hard time sitting through the service, so I grabbed a little, one-inch-diameter, crappy imitation of a Koosh ball out of my pocket to play with. Busy fingers = less stimming, and stimming happens when I'm tired of listening (or stressed, or excited, or can't get words out, or happy...). Anyway, my little purple Koosh ball was doing its job. I can't say that I heard much of the sermon, but I was quiet and relatively still. Later, in the car, Leigh (who says it's okay that I use her first name and call her my "best friend" on here) said, "I can't believe that old guy was being so rude." Apparently, the, ahem, older gentleman sitting in front of us kept looking back and turning around and whatnot.

Story 2: I spent college getting in trouble with professors. There were a lot of problems with me coming across as rude, acting as if I thought I knew better, uncaring, etc. Being an education major, that didn't fly. I have been called "the most disgusting individual I've ever come into contact with," unprofessional, unfit for being a role model, inconsiderate, and my mom's parenting abilities were brought up more than once.

Story 3: Last week, I was sitting in the kitchen at partial eating lunch. It started off as just B and I, someone I talked to frequently. Over time, more and more people came in, until there were 6 or 7 and things were pretty noisy. Another woman sat across the table from me and sort of invited herself into our conversation. I was having a really, really hard time focusing and talking. I knew that B is understanding, though, and she waited patiently while I got distracted and frustrated and tried to find my words again. The other woman asked if there was a problem. B said something like, "She has autism. It's noisy in here, so it takes her a minute to think clearly. Just hang on." The woman (also in the program) said, "WOW! You're autistic? Really?! I can't believe that! You do so well!"

Too weird to be normal, but too normal to be weird. Really?

Graduations

High school graduation (June 2005): There was a torrential downpour just before the ceremony, so we sat outside in lightening. 511 people in my class. I graduated as a junior, so while I knew a couple of people and knew of some, I felt completely out of place. I hated it, and I only went because my parents "had" to see me walk. Later that summer, I fought hard not to have a graduation party, but my mom really wanted to, so we kept it small. I hid as much as I could inside and had stopped talking less than halfway through it.

College graduation (May 2009): Inside a zillion-degree gymnasium because it rained outside. Afterward, while everyone went out and took pictures and enjoyed their friends, I hurried back to my room, packed up, and left within a few hours. I was in a horrible mood at my parents, who were in horrible moods at one another (parents = mom and stepdad, dad and stepmom). I have no pictures from that day, and I saw no friends. The few quasi-friends I had were much more interested in their "real" friends. I don't know that I talked to any of my peers all day. No party, no out to eat, not even a word of "congratulations" from anyone but my six and eight year old sisters.

Partial graduation (today): Fourteen patients, four us graduated today. I got to speak to the group and to any individuals I wanted to address. I was praised for my specific strengths and all the things I've worked so hard to improve. I laughed, some people cried. We have all grown together so much in the past weeks. There was a cake and ice cream, congratulations, and phone numbers and emails exchanged. I left with friends- the real kind, who have seen me at my worst, who wait so patiently when I try to get words out even when they're wobbly, who like me anyway. I got three texts when I left my first day of work asking how it was, telling me how proud of me they are. I earned my third diploma today, and you know what? I don't know which lessons were more valuable.

The cake from today... thanks to one amazing woman!

Looking back

It's interesting, relieving, validating to look back and give a name to so many incidents throughout my life.

When I was 2, and I screamed bloody murder when I got put in the "wrong" clothes.
When I was 3, and I got so uncomfortable with the noise at the airport that I my bit hands until they bled.
When I was 4, and I upset my parents by banging my head on the walls.
When I was 5, and I had a melt down at a party because someone offered my Diet Pepsi (I was a die-hard Diet Coke drinker, and I was afraid they'd make me drink Diet Pepsi, which I hated).
When I was 5, and I spent my own birthday party hiding in my room with the cat.
When I was 6, and I was pulled out of first grade for the strangest combination: accelerated reading and small-group social time.
When I was 7, and I spent hours lining up my 22 dolls, undressing them, redressing them, undressing them, re-redressing them...
When I was 8, and a school report came back that described me as, "stubborn" and "marching to the beat of a drum that only she can hear."
When I was 10, and I had one melt down after another on "wonderful" beach vacations.
When 12, and I got made fun of for my "OCD" or needing things "just so" by my friends for the first time.
When I was 13, and I hated to go to the pool, dances, and sleepovers.
When I was 15, and I had a melt down at my first part time job (it was a noisy place).
When I was 16, and I spent my sister's college graduation and then graduation party hiding inside, unable to talk.
When I was 17, and I started college but couldn't handle the independence and had to temporarily come back home.
The last four years, which I've spent avoiding dances and going out; collapsing after a few hours of class, unable to handle any evening meetings or obligations; having to feign illness because I lost my words when I had to give a presentation; getting on the wrong sides of professors for not being professional (in my book, that involved a lot of lying), being irresponsible, and unable to handle the social aspects of an education major; leaving classes partway through when those darn fluorescent lights were just too much; eating by myself often, because I couldn't handle eating with people when the cafeteria was crowded...

Get the idea?

I might feel -------- if...

I might feel happy if:
- I'm smiling or laughing
- I am doing something I like
- I hear good news

What can I do?
- Share with someone
- Keep doing the activity
- Write down what happened

Happy is probably the easiest example, and to be honest it's the only one I can do like that. I know that the doctor at partial wants me to have cards for different emotions so that I know how to deal with them. But, back up a second. I can't consistently identify any emotions. Happy, sad, excited, and mad I can do with some consistency, but even then.... sad vs. disappointed vs. sorry... I can't seem to sort out. I need to be able to go through a step-by-step process: I am doing x, therefore I might feel y, and I can change that by doing z (if x is a negative emotion). Feelings that I'd like to be able to pick out better are excited (because I get carried away and annoy others), angry, sad, disappointed, frustrated, and anxious. I'm open to other suggestions for ones that could be important. I need to be able to identify those, then have ideas about what I can do to change them.

I know that I do feel emotions, it's just that they seem to be something that happens to me without reason, so it's confusing. I wish I could learn about emotions like I do about, say, history or math. Emotions do not exist on their own, they are not objective truths; they are subjective. Any one emotion is not inherently good or bad... right? So how do I know if I should attempt to change an emotion? Or maybe it's not changing it, but dealing with it properly that is important. Emotions are situational and change frequently, whether by outside circumstances or internal efforts. They are the one thing that we can truly control in our interactions with other people; as in, we cannot control their reactions to us, only our reactions to them. I guess emotions are more important than I like to give them credit for.

My emotions definitely affect how I act. For example, I wouldn't have my outbursts of IT if I weren't feeling something different. I just don't have any idea what that feeling is or how to put words to it. I hate to subscribe to an external locus of control like I'm about to do, but I certainly don't feel very much control over my emotions. They just seem to happen without rhyme or reason.

All of you mothers out there: work hard on labeling your children's emotions for them when they're young. Maybe they will be better able to internalize the whole idea of emotions, causes, and ways of coping without the external steps I'm needing to put in now. For example, if you say to your child enough times, "I see that you are frustrated because your blocks fell down. Let's work together to build them back up," maybe he will learn that frustrated is what he feels when something he wants goes wrong, and that one way to deal with that is to ask for help. Obviously I'm no expert, but something like that, done consistently, could have helped me a lot.

I wish I knew what the emotion is called when I lose my words. I think that they're half joking when they say it, but my friends actually do tell me to "use your words" every once in a while when I'm not happy and not talking. Sometimes, the words just float around in my brain and I can't peg them down to get them out of my mouth. I can't figure out why it happens sometimes and not others. It's almost always after I've been interacting with people for a while... I hit a wall, and I can't talk any more. But is there some emotion involved with that? Could I say, I might be feeling x if I've lost my words? Thoughts, anyone?