Wednesday, June 30, 2010

I am SO nervous

For as much talking as I do about my mom (we're practically joined at the hip; my mom says "it's a genetic thing," as she and my grandmother were the same way), you probably don't hear me mention my dad much. Dad lives about 3 miles away from Mom's house with his new family (stepsisters 28 and 25 are out of the house, stepsister 19 is moving out this fall, and half sisters 7 and 9 are the cutest, sweetest little buttons you've ever met). Stepmom believes some fallacies about ASDs: that I don't really have, that my mom caused my issues by spoiling me, and that the only cure I need is to be booted out and left to fend for myself. She is fairly verbal about her beliefs, leading me to avoid spending time with her. Since it's darn well near impossible to get my daddy without getting her too, I don't see him very much. Her beliefs aside, I love them both very much and believe that they both want the best for me. However, I'm not at a place in my life where I can stand up to the harsh criticism, especially of my beloved mother, so for now, staying away is the best thing I can do.

Growing up, I was super close to my dad's sisters and their families. They are much older than he is (now 79 and 70, Aunt D and Aunt "B"... I actually call her Aunt B... respectively), and I saw them almost yearly for a long time. Aunt D lives in New York and Aunt B lives in North Carolina, so about 10 hours either way from home. Since my dad got his new family, I've seen them both exactly twice (Aunt D most recently was a Daddy-daughter road trip in 2005; Aunt B was when my paternal grandmother died when I was 13 or 14). They are both like grandmothers to me, but since Dad got the RV and it's filled up with 4 people, I don't get to go see them. It's logistics to him, but still, it hurts.

Well, this week, we are visiting my sister's inlaws about an hour north of New York City. (Side note: I get to go to vintage toy stores on Saturday in the City with my sister, and I can't wait). Anyway, I told Dad I was leaving town for a few days, and he asked where to. I said "Some random place. Danbury, maybe?" He said, "Danbury, Connecticut? That's where Robin (Aunt Dona's daughter) lives! Can you see her?" I told him that we were going to New York, but I sure wished I could see her!

Today in the car, as we approached our midway destination of Wilkes-Barre, PA, I asked Mom if we were staying in CT. Affirmative. I immediately called Dad and he gave me R's phone number. I faced my massive telephone fear and called her. "Um, hi, R? This is Lydia. Dave's Lydia?" "Lydia! How are you, sweetie?" "Well, I just found out right now that I'll be in your town for the rest of the week. Is there any way I can see you? I'm dying to see you all." "I'm free! Just tell me where and when to pick you up. You'll come over to the house, right? Will and Eliza and Lyle (cousins) will be home too..."

So, Cousin R picks me up at 10 AM Friday morning. First, we go to see Aunt D and Uncle F in New York, then we go back to Robin's to catch up wth the my-age cousins.

Here's where the nerves set in. I greatly fear being compared to my "typical" cousins, who do things like live in NYC and travel Europe in their early 20's. Then there's me. I'm not upset about who I am, but I'm certain that my dad has never explained my diagnosis to my family. Given the way I struggle with verbal communication when I get anxious, I decided to text Robin. I said, "Robin, I just want to give you a heads up. My dad probably never told you that I have mild autism. It's gotten more obvious as I've gotten older. I'm super shy without my mom. I just wanted to let you know..."

She hasn't texted me back yet, though it's only been as long as it's taken to write this post.

What will she say? What if she never responds, and I have to play the game of, "So did you get my text?" What will they think of me?

Did I mention that I'm nervous?

Tuesday, June 29, 2010

Summer according to The Black Book

In some semblance of chronological order...

Meet with the man from the PA Autism Waiver to see if I meet the functional eligibility requirements. We thought I might be too high functioning to get the Waiver, but after a 2-hour interview, he said he doesn't think I am. We'll hear back from them soon about the (hopefully) next step.

Dentist appointment. Dentist says that I have gum disease, that my gums are pulling away from my teeth. This is no good. I have to go to a periodontist (gum doctor) to have a special "deep cleaning" in July. It will be painful. I will certainly ask to be somehow sedated, as I absolutely hate things in my mouth.

Go to New York to visit my sister's in-laws. My stepdad is getting his car tuned up (don't ask me why; it's a new car) so we will take his car, which means no eating, drinking, or breathing. My aunt lent me her portable DVD player, so this will be nice for the ride, because I get sick when I try to read. Also, I will spend a night in my sister's (tiny) apartment in Manhattan and go shopping and go to Serendipity 3 the next day for frozen hot chocolate. I am excited!

Moving out in July sometime. Don't know more speicific than that.

The week of July 18th is the Week of Doctors Appointments. I have 4 that week. Yuck.

In the end of July, Aunt Mary (Mom's sister) is taking me to see Hairspray performed downtown. Very excited for this.

August is still blank. I will have appointments on Mondays, work on Tuesdays, chiropractor and CET group on Wednesdays, work on Thursdays, and chiropractor and CET computer work on Fridays. Oh, and work some Sundays, possibly. Sounds busy enough to me!

Friday, June 25, 2010

A book is born

Interview with Autism is officially published on Lulu and is available at here.

Not sure if it's available outside the US, but if you can't buy it on Lulu, you're in the UK, and you want the book, just let me know and we'll work something out.

Thursday, June 24, 2010

Comments needed

If I were to self-publish my book, Interview with Autism, about my experience with life on the spectrum, would anyone buy it? I wouldn't make more than a few dollars, and that's not what I'm interested in... I just want people to get a perspective on autism.

Any takers?

Wednesday, June 23, 2010

Everybody's kitten

Last night at work, as T and I were dutifully cleaning the back cats' cages, I left the room to retrieve food for the cats that eat 24/7 (most kittens). Tavida came into the hall olding a kitten. "Where's D?" I told her I didn't know.

"This kitten isn't breathing."

I stood in the center of the four hallways and screamed for D, who popped out of a room down the medical hall. T ran down with the kitten. D said, "Call the staff person on call and ask if you can take it to the ER." I, who refuses to talk on the phone, picked it up and called C. I calmly reported the situation and asked if we could take the kitten to the ER. "Of course."

We dug through the first aid box on the wall and found the van keys. Only one van was in the parking lot, and it was hard to find the right keys. We ran, not walked, out to the van. I've never driven a van. The ER is just around the bend, so we got there and T rushed out with the kitten while I clumsily parked the van (not to mention backed it into a rock, but don't worry, no harm was done to the van). I walked into the ER where they whisked the kitten away to try to help him. They asked his name. Well, there are 3 little black males named Earth, Wind and Fire, but we didn't know who this was. We didn't even know his name.

Just then, I got a phone call from D, who was back at work, saying that one of the higher-ups wanted me to bring T back and stay alone with the kitten. We drove back, and T hopped out of the van to go in and ask D what paperwork we needed to bring to the ER. I saw the higher-up and asked the same question, and she grabbed my cell phone to call the ER to ask what we needed. I could tell by the conversation that we weren't going to need any at all.

"He didn't make it. I'm sorry."

I parked the van, went back in, and got back to work. I felt okay. I wasn't that upset. I even texted Leigh and said, "What's wrong with me? I'm not even crying about it." She said that nothing was wrong.

Well, that didn't last long. I talked to Leigh on the drive home (shh, don't tell Mom I drove and talked) and was fine until one little thing Leigh said set me off. I started to cry and got off the phone quickly, as I had suddenly lost my words and felt sick talking.

Full blown melt down ensued. I talked to Leigh on Skype, getting upset with her for undeserved things. I was a mess. I was so upset that this little kitten, who had been living in a cage, didn't have a family and had never been loved by anyone, had just died without knowing how good life could be in a family. I cried, and cried, and cried...

When I finally talked to my mom on the phone today, she explained that this kitten had a better life than so many cats out there. He was warm, and fed, and always had clean water. He lived with his 2 brothers and played. He had a nice bed. He wasn't somebody's kitten, but he was everybody's kitten at work. Everybody loved him.

I'm still not over it, and it may take a while, but I think I'll slowly feel better.

And by the way, we found out; the kitten's name was Earth.

Sunday, June 20, 2010

Break out your thinking caps

I went to the amusement park with the HFA/AS group yesterday, and we really had a great group of people. There were 8 of us (until the rain let loose, and then there were 7) and we went from noon till the park closed at 10:30 PM. The leader of the group and her son rode everything with me (I was all worried that everyone would be selective and I wouldn't be able to ride my favorite crazy rides), so that worked out wonderfully. It was hot as a brick oven until it rained and we all got cold, and I burned even with SPF 110, but it's part of the summer amusement park atmosphere and I kind of enjoyed the heat. It made the rides feel really, really good with the wind.

Although rides are my favorite thing in the world, I also really enjoyed getting to talk to everyone there. While it rained, we talked about disclosure vs. nondisclosure (most people are for not disclosing), diagnosis, and meds. I hadn't taken my Geodon that day and everyone noticed how talkative I was. I talked a lot with the group leader and her son and really enjoyed getting to know them both better, since to this point I hadn't talked to either of them much due to my Geodon, mostly.

One of the things we all talked about while standing in line was how frustrating the bi-weekly discussion groups have become. The groups are divided into social outings and discussion groups and have different leaders. In the discussion groups, 2-3 people, who are all less than pleasant, use the group as their own personal therapy session and the rest of us, especially those of us who tend to be quieter, never get to say anything. A few of us have decided to leave the group because it's become so ridiculous. The (social) group leader suggested that I contact the discussion group leader and let her know of my frustration.

Knowing that the discussion group leader had blown off other people's similar frustrations in the past (saying, "just jump in!"), I wrote a very straightforward email to her and explained my concerns. I said that it's unfair to expect the group members to "jump in" and cut off the "talkers," especially because one of the "talkers" likes to get in people's faces when he gets cut off. I said that I thought it was her job to curb the talking.

I was surprised that she got back to me very quickly and said that she understood why I was frustrated and that she had tried many things, and so far, nothing had worked. She has broken the group up into smaller groups many ways, put the talkers together and split them up, and still, the talkers talk. I suggested trying to impose a time limit on talking for each person or a number of turns limit per group. I also suggested breaking the group into small ones of 3-5 and asking each small group to find something they had in common, as a way to get to know everyone, even the quiet ones.

I hope something works out, because I really do like the company of certain people within that group and the possibilities of an HFA/AS discussion group. So, I ask you this. Do you have any ideas as to how to curb the talkers and bring out the quiet ones? Either general ideas or specific activities we could do that would allow everyone to participate would be great.

Got your thinking cap out and ready? Time to put it on!

Friday, June 18, 2010

Just an update

I'm having issues at work, but... more on that later.

For now, I just thought I'd let you know that we dropped my Geodon dose from 60 mg in the morning and 60 mg at night to 30 in the morning and 60 at night. The doctor explained that although skipping one dose will get rid of the side effects (like the sedation I experience), it doesn't make much difference in the actual Geodon levels in my body, so I won't notice a huge difference in the med doing its job, namely, curbing melt downs. So I may start to experience more melt downs at the 30 mg and we may have to go back up, but it's worth a try, right? I'll let you know how it goes :)

Monday, June 14, 2010


I had to attend a training at work today from 9-5. I was told that it would include the obligatory important speakers, and that would be a few hours' worth of information stretched over 8 hours to be painfully boring. Let me tell you, I couldn't wait (Hey, look- autistic girl using sarcasm. Who knew?).

I was terrified of two things. The first was being in a room with my boss for 8 hours. Nothing to worry about there, though... she just, you know, sat right next to me in this room of 75 people. The other issue was that I wouldn't be able to stay awake. It's a rare day that I'm up for 8 hours all at once. Leigh said drink Diet Mt. Dew, which is a good idea, but that brings us back to being in a room with my boss and having to leave mid-speeches to uh, use the facilities. She wouldn't like that... just a feeling.

So between my mom and I, we made the executive decision that I should skip my Geodon today in a last ditch effort to stay awake. Well, mission accomplished (and it only took 5 Diet Mt. Dews, all day), but... I'm uncomfortable with the side effects. Namely, all the talking.

I was so social today. I have gotten so used to being completely withdrawn that I'd forgotten that I had once liked to meet and greet, albeit in my own way and rather awkwardly.

First, I introduced myself to the company's... not CEO, because it's a nonprofit... but the big important guy who's in charge of everybody. I said, "Hi, David. My name is Lydia, I'm in Animal Care. I've heard your name around and I just wanted to say hello and officially meet you." We should hands and he said, "I do hope you've heard only good things!" I laughed and said, "Of course! Nice to meet you." Very scripted, very rehearsed, but I did it.

Then I saw a volunteer in the playroom with one of my favorite cats that I've never gotten to pet out of the cage. I asked her if I could come in with her and pet Henry Lynn (a girl cat). She said of course, and I pet and we chatted. Wait, did you catch that? Let me say it again. Chatted.

And I met the new volunteer coordinator, Kevin. He's brand-spankin' new. I asked if he knew all the animals in the shelter yet, and he said, "No, but I look forward to meeting them." Being that we were then walking past the cat condos, I said, "Well, this is Chloe, and she loves to come out. And this is Katie and she has one eye so you have to approach her from her left side, or she spooks. And this is Sophie, and she's crazy because she's just a year old. And this is Gem, and she's just crazy because she's Gem... and..." And said, "Uh, that's great, but I think I'm going to go wash my hands." And he bolted. And I thought, shoot, he didn't mean he wanted to know them now.

After the training was over, we walked up to the new memorial garden in the woods. I saw the new vet, who had just given a presentation on the health benefits of spaying/neutering and introduced us via pictures to her peacock, ducks, chickens, cats, and pig, and I said, "Hi, Dr. Phillips. I just wanted to tell you that it's my dream to meet a duck, and that yours are gorgeous." She said, "Thank you. What do you do here?" And the conversation started. We talked for a half hour. Do you know the last time someone had a half-hour long conversation with me? Maybe Leigh on the phone sometimes, but other than that, not at all in the last year. Dr. Phillips and I talked ducks, and pigs, and the benefits of vegetarianism (she is, I'm not), and the ropes of work, and Temple Grandin, and I introduced her to my favorite cat in the shelter...

One down side of training is that no one cleans cages from 9-5, because... well, we're all in training. It leaves a heap of work to be done for the evening staff, the shift which I usually work. So I gladly stayed after the training for a couple of hours and cleaned, made Kongs, and fed cats.

Upon coming home, I told Mom about my day. I said, "I don't know how I feel about all this talking." She said, "I do. It's too intense. Can't we find a happy medium?"

Throughout the evening, the day has been catching up with me. Sure, I talked more, but I also kept getting laughed at by my peers over lunch (definitely laughed at, and not with, because I never got the jokes). I screwed up big time with the volunteer coordinator and put him in an awkward situation. And what if the new vet thought I was completely obnoxious? I'm not sure how I feel about the talking. Then again, maybe I do. I think I prefer being quiet. Quiet means you can't screw up as easily.

I kind of wish I could take the words back.

Saturday, June 12, 2010

On TTS programs

I have a problem when I go to therapy appointments. You see, although my verbal IQ is in the superior range (meaning, my vocabulary is good) my verbal fluency is "below average." I have trouble with verbal communication, and I get frustrated. This is especially true in therapy when I'm expected to speak for what feels like long periods of time on sometimes difficult subjects. For many of the things I need to talk about, I just don't have the words.

The solution is fairly simple. Although I struggle to speak, I can certainly type whatever is on my mind. Leigh and I sometimes have conversations where I type and she talks, sitting side by side (at least, we did in college). But this setup doesn't work very well in therapy, where my therapist is across from me. I'd rather not pass the laptop back and forth... it's slow and cumbersome and basically, it's a pain.

So I set out to find Jtalk, the text-to-speech (TTS) program I used in college but had since deleted from my computer. Turns out it's no longer available. Kate and I spent forever on the night before my therapy appointment trying to track down a good TTS. The problem was that they all used the same voice (Microsoft Sam), which sounded flat as could be and like he was underwater. It was terrible and hard to understand.

Finally, around 2 am, I found Language Reader. This program uses characters (my favorite is Merlin, the wizard) to talk, and their voices are pretty good. The only downside is that they're all men.

Oh, and did I mention that, after having stayed up past 2 am to find said TTS, my therapist cancelled on me early the next morning. At least I'm set for next time.

Monday, June 7, 2010

A blessed duck

Sometimes I just stop and think of what a lucky duck I am. I guess I should say that I'm blessed, instead of lucky, because luck implies that it's sourceless, but it doesn't have the same ring to it, you know? Oh well. A blessed duck is what I am.

As I write this, I'm sitting out on my back deck which is on the 2nd floor of the back of my house, watching hummingbirds come to the feeders. Bob is out here with me, and we just talked about our days. I have at the table with me my computer, my Diet Coke (now empty), one of my new Disney puzzles that my aunt got for me this weekend, 2 of the 12 cats I got for myself at the craft store that I've been wanting (I can only keep 1 or 2 at a time, Mom says, because if Bob realizes how many I have he'll say I don't need them and cause a fuss... sneaky cats!), my book from the library, and my cell phone. A whole pile of anxiety-busting goodness.

Today is my wonderful mentor from church's 61st birthday, and I got to bring her flowers and a card and a Pooh picture I colored to her job at the church today. She was so happy she cried! That wasn't quite my intention, but I'm glad she liked it, and the flowers were beautiful.

And last night, around 10pm, Leigh called because she was giving Joe tuna and I got to hear him meow. I love Joe's squeaky little meow. It made my day.

I'm going to go get Elsie to come wander around out on the deck with me. She looks so pretty outside.

Yes, a blessed duck. That's me.

Friday, June 4, 2010

A-puzzling we will go

I like to do puzzles. About a month ago, I got a 300-piece artist's rendition of my beloved Mickey Mouse. I thought it would be fun for my mom and I to do. Well.... it was, kind of. The thing took us, plus Bob, nearly a month to put together. We did it a half hour at a time, because it was on the floor and made our necks hurt to look at it. I was hoping for this to be a puzzle I could do frequently, but there's no way I'm taking that sucker apart. It's going to get puzzle-glued onto some poster board and hung up in my new apartment.

So I had a task for Sarah and I today, regardless of where we went. I wanted to get a smaller puzzle or two. I thought maybe 100 pieces would be good.

She came 'round about 11 am, three youngest nannying charges in tow, and we set out to the park. We stopped at McDonald's because neither she nor the kids had eaten yet, so we got a picnic lunch of cheeseburgers and fries (not me, though, because I'd already eaten). We sat and ate outside while the 3-year-old freaked out about bugs, the 4-year-old took the tiniest bites ever, and the 19-month-old threw his food around on the ground. Did I mention how cute these kids are? They're absolutely adorable, and they actually behave pretty well for Sarah. After lunch, I went on the swings for a little while (gosh, it wears my arms out though, and I think I have some trunk instability going on because a swing is hard work for me to sit on for very long). The kids chased each other on the playground, and Sarah and I sat with the baby. Eventually, we let him out of his stroller too, and chased him around. It was hot but lots of fun.

After an hour we headed to Walmart (the closest place around that would have puzzles). I thought Sarah was brave for being willing to take the three little ones in there, but she was up for it, so we went. I got a cats puzzle (took some digging!) and Monsters vs. Aliens, which Mom and Bob and I watched not too long ago and I found hilarious. For $2 a piece, who can beat it?

I came home and relaxed for a half hour then headed into the city for my CET (Cognitive Enhancement Thearpy, a.k.a., the computer portion of the research study I'm in at the University). After some memory work on the computer, I met one-on-one with one of the psychologists doing the study. She wanted me to pick on something to work on during the group sessions of CET, which started this week. The group is all about social cognition and improving it. She mentioned that my attention/vigilence is in the 13th percentile, and that my thinking is very rigid and impoverished (some of the impoverishment is due to medication, though). Anyway, I decided that since my attention is so ridiculously bad, that I'd focus on that for the first few months of the study. I have to write something up about it (note to self...).

I came home and tore into my puzzles. I did the cats one first, which took about 15 minutes, then Mom helped me to do the Monsters vs. Aliens which took about 10. They're perfect. I can whip them out, put them together, and put them away. Exactly what I was looking for!