>Mem-or-i-al Day

>I can’t say “Memorial Day.” It comes out all screwy, and I end up saying it 19 times, not one of them right. Gah. If I go at it one syllable at a time it helps, but I rarely remember. Every time I go to say it, I think, “This is it. I’ve got it this time!” And every time, it comes out a mess.

The biggest event of the year with the HFA/AS group I go to is its Memorial Day picnic at a big park in the city. This year, 50 people came, and every one of them brought food! My parents and I went to the picnic. I stood around awkwardly, sat with some friends and listened a lot and tried to join in the conversation, and then, getting tired, went over to sit with my mom and the other parents she was with. All the good food aside, I wasn’t having all that much fun and was getting ready to go home after 2 hours.

And then, the parents of one of the guys in the group who I talk to online mentioned that they read my blog. They said that their son had trouble expressing why he does certain things, but that by reading my blog, they could gain some insight his mind. It utterly made my day to hear that I was helping someone understand their child better. From experience, the parent-child bond can be very difficult at times with an autistic child, and if I can help someone ease the strain, I’m so grateful. I’m not saying that parents don’t love their autistic children or that the children with autism don’t love their parents, and both beyond belief, just that the differences in how we both face the world can cause confusion and even frustration.

To the mom and dad I mentioned above, God bless you and your son. You have done an incredible job with him, and your love, patience, and hard work over the years with him shows. He is a kind and generous guy, and I am blessed to call him my friend.

Though unrelated, I also need to mention that I’ve found an aide! Her name is Sarah, and she’s 21. She is Catholic but is willing to come to church with me in the event that my mom can’t, and she likes cats. She nannies for a family of 5, and the 8-year-old girl has autism and anxiety, so she has experience. We have plans to head to the mall on Friday, and I can’t wait. I almost never get to go out with someone my own age and just have fun and talk, even though I’m not so great at the talking part. So, leave a comment to say hello to Sarah, and she’ll see it.

>The best day ever!

>Today was one of the best days ever. Care you to know why? Well, I’ll tell you what I did. I woke up and went to a therapist appointment, where Jannette gave me a new squishy that lights up. Then I came home and did the usual computer/TV combo for 2 hours. After being sufficiently brainwashed, I made a run to the grocery store for the essentials (Diet Mt. Dew, Ensure, and flowers for my mama), and to Walgreens to pick up prescriptions (6 of them!). I came home and was supposed to meet the potential new aide, but we got our signals crossed somehow and she didn’t think she was coming tonight, so we had to reschedule for Sunday. Minor melt down ensued. Mom warded it off by offering to take me to get a movie from the Redbox, my choice. I chose Monsters vs. Aliens and thoroughly enjoyed it. Lots of laughing. Mom and Bob, not so much, but they watched with me and made me very happy.

So what makes this day so fantastic (aside from the squishy, of course). I was out of Geodon this morning and decided just to skip the dose rather than fly off to Walgreens. Bad, bad, because the last time I missed a dose (of all my meds that time), I wound up in the hospital for 3 weeks. Today, aside from the single near-meltdown, I did really well. In fact…

It’s been incredible. I’ve been awake since 9:15 this morning and haven’t needed a nap. I chatted Mom’s and Bob’s ears off, when usually I say nothing. I smiled and I laughed. I cracked up at the movie. I couldn’t shut up during it! I was thinking that I must be hyper, but no, this is how it should feel. Wow. The difference is indescribable. Can you feel it? I’m even blogging far more easily. I told my mom that the words just keep spilling out and I can’t stop them!

The downside is that, had anything really gone wrong, I would have lost it. I got upset when my stepdad talked to me, I got upset when I had to pay a whole $5 for my 6 prescriptions, and I almost completely lost it when S couldn’t come over (she’s coming Sunday instead, so no harm done). I really can’t go without the med, or I’d be back to the screaming, crying, self-harming mess I was a year ago. And did I mention that all day I’ve been stimming like crazy? But oh, how good it feels. Maybe, now that my life is more stable, it’s time to back down on it and see how I do? That’s a very scary thought, because I don’t want to return to what I was this time last year. Ever.

Not to mention, how do I go back to that fog tomorrow? I already tried asking Mom if I can skip another dose in the morning, and she said no way. But I so badly want to have fun on our day out instead of drip and drag like I always do anymore. Ugh.

That’s all I got folks. Comments appreciated about the dilemma, though.

>An aide for Lydia

>No one can argue that there aren’t a lot of helpful people in my life: 2 therapists, a psychiatrist, one fantastic endocrinologist who truly cares about all of me, a new case manager (her name is Star, and she doesn’t really like cats…), and soon-to-be “Housing at Home” people who will help me budget, clean, cook, and shop.

Can you tell me what’s missing from all of this?

I need someone who will go to the mall, go to the library, and do puzzles with me. Yes, Mom does all of that, but I’d love to have someone closer to my age, you know? Leigh would happily do those things, but a 4-hour-trip for a quick run to the mall is just out of the question, obviously.

So I embark on finding an aide. I will pay someone $5/hour to… be my friend. I’ve spent the last year trying to find friends to hang out with, and it just hasn’t worked. So far, 4 people have responded to my ad on Craigslist. (I realize Craigslist has some safety issues, but they will come to the house when Mom is home to meet me). This person will help me get out in the community more, as well as hang out at home if that’s what I want to do.

Wish me luck!

>10 reasons to get anxious. fast.

>1. There are people talking or singing (which happens at church sometimes) behind me.

2. Dogs are barking.

3. Children are screaming, squealing, screeching.

4. Elsie doesn’t come when I call her.

5. Leigh stops texting, mid conversation. Just stops. (I’m not blaming Leigh here. It’s bound to happen sometimes. It just makes me anxious).

6. My boss says, “I need to talk to you.” Oh heck, my boss says anything in my direction.

7. My stepdad says, “LYDIA!!!!” from across the house.

8. The mail doesn’t come on a holiday. I know it’s not supposed to, but I still wish it would.

9. I don’t have my phone on me to text.

10. Alton Brown isn’t on when he’s supposed to be. 11pm.

>Stuck on ducks

>I don’t know if this is an autism thing or not, but…

A few weeks ago I told my mom that I must be the luckiest duck in the world (because I have Elsie). I frequently started referring to myself as the luckiest duck, and it kind of stuck. So now Leigh is a lucky duck, because she has Joe (her cat). And if we’re lucky ducks, we must be ducks, right? And if I’m a duck, I must have been born of a duck, so that makes my mom a duck. So now everyone is ducks.

Add that to the fact that ducks waddle and quack and swim (I’m dying to swim right now), and I’m totally stuck on ducks. I find it endlessly entertaining. That would be fine, except no one else does, and people are losing patience with me about the ducks. But I absolutely can’t help it. I must talk about ducks.

I’ve been going to this online forum/chat room for people who are asexual (which I’ve recently found the word and concluded that I most certainly am such), and I’ve found that I can only talk about two things: duck jokes, and cats. I can’t just join in the conversation like everyone else. Luckily, it seems that a disproprotionate number of asexual people love cats, and so I’m usually accepted in the chat room. The ducks, not so much.

Why doesn’t anyone get the ducks?

>My own skin

>Being comfortable with myself means accepting in myself would I would readily accept in someone else.

It means learning what makes me happy, and as long as it doesn’t hurt anyone, doing it.

It means learning to be careful that I don’t develop compulsions… before I even start to develop them.

It means realizing that sometimes, I look different to people.

It means that sometimes, I am different from other people.

It means coming to grips with the fact that “normal is a setting on the washing machine.”

It means doing what makes me comfortable, like cutting my hair off, regardless of what other people think of it.

It means watching what I like on TV, even if it’s not age appropriate.

In fact, it means learning to throw age appropriate out the window.

It means not getting angry at myself for repeating or throwing out bits of delayed repeating from TV shows, because I’m doing the best I can.

It means doing what I need to do to get through work, even if it means taking medication.

It means being an advocate for myself, at work for example. Everyone knows that I have autism and that I’m a little different, but they also know not to expect less work out of me for it. Oh, and they also know that I have a service cat and all about what she does.

It means accepting that God made me this way, not because of anything I did wrong, but so that my life may be to His glory.

It means sitting with the fact that people love me (yes, me) for who I am, and wouldn’t want to change me even if they could.

I’m not there yet. Maybe it’s normal stuff to deal with at 22, growing into yourself and whatnot. Give me another 10 years (gosh, will I still have this blog in 10 years?) and we’ll see. Maybe I’ll be there by then.

>Growing down

>Especially since I’ve been working, I’ve been growing the wrong way. You see, Mom wants me to grow up into an adult. But instead, I seem to be growing down into more of a child.

I’m hoping my neuropsych tests on Wednesday will prove that this is happening.

I can tell that my mama struggles with this. The problem is that the things that make me truly happy aren’t adult things. Sometimes she gives in. For example, at the mall last weekend she got me a new Mickey Mouse t-shirt that I’ve only taken off long enough to watch. She always has said, “Mickey is for kids,” but she knew how happy it would make me (and it did!) and bought it for me. (Don’t worry, it was on sale.)

I’ve had the desperate urge to get my American Girl dolls back out and play with them, and she’s letting me do that. I never really play played with dolls, just dressed them and undressed them and dressed them again. Oh, and put them to bed. I love to put them to bed.

I do puzzles, color pictures, and watch kids’ shows on TV.

I have a secret, very childlike urge, that I can’t even admit to. I have to keep reminding myself that I’m 22. 22.

Grow up, already.

>Nervous

>I’m going out to lunch with my mentor from church tomorrow. She’s absolutely fabulous, but I’m really concerned about keeping up my end of the conversation. My mom always…. searching for a word other than complains…. ah, points out that it’s almost impossible to have a real conversation with me because I don’t hold up my end. Sometimes I’ll willingly talk for a few exchanges, and then I just run out of words and completely quit. I can talk about Elsie, but I always say the same things and I’m guessing my mentor is starting to notice. Also, I hate to talk and eat. I like to eat my food and only eat my food. It’s too hard to focus on talking when I’m trying to eat, and I gave up many years ago. So when I eat, I do it in silence. Tomorrow, I will have to manage both talking and eating. And I’ll have to make sure I use my manners for both.

Why did I ever agree to this lunch thing? So much to go wrong!

>It’s official!

>Warning: This is not an organized post.

1. I got out of bed a week or ten days ago, and out of the blue I had severe pain in the ball of my right foot. After that week or ten days of ice and ibuprofen, to no avail, I got up yesterday morning and couldn’t put weight on the foot. I got someone to take my shift at work last night, canceled my dentist appointment because I couldn’t drive to get there, and made a doctor appointment which Mom drove to. The verdict: plantar fasciitis. And darn, it hurts. They prescribed NSAID patches for the bottom of my foot, and gave me a free sample to use, except now insurance is being a jerk about covering it and I might be stuck taking oral ibuprofen in high doses, which upsets my stomach. So, we’re battling the insurance.

2. I was on the phone with the psychiatrist’s office yesterday (why in a moment), and the woman said, “…because you’re losing your insurance at the end of the month.” What! So Mom tried to call the state office and figure out what was up, but they refused to speak to her. She has my power of attorney, and yet they wouldn’t speak to her. So, we got up early this morning and got on speaker phone and I told them they could talk to her, and they did. Turns out that when they canceled my cash assistance on May 3rd, they also canceled my Medicaid. The Medicaid was supposed to be reinstated May 4th, only… they forgot. Mom says, “Clerical snafoo.” I say, seriously people? You forgot? So anyway, that’s straightened out.

3. My new house won’t be ready this month. Boo. I got in trouble with Bob the other night for breaking the rubber gasket on the blender (we had another one….), and I think he and I have both had it up to here with each other. I try so hard to be good, and he tries so hard to be nice, and neither one works out very well. It’s kind of against my nature to be good, and I think it’s against his to be nice, so… hmph.

4. I’m getting a full battery of neuropsych tests done next week. It takes four hours, and they start at 8:30 in the morning. Have I ever mentioned that I sleep from approximately 11pm until noon everyday? This shall be interesting.

5. Elsie is service catting on the back of the couch, as she often does. Which brings me to the title of my post. She’s official! Her papers came in the mail. She’s registered through SARA (Service Animal Registry of America) and she has a big paper, a medium-sized paper, and a wallet-sized card, all with her picture and whatnot on it. She’s official!

>An answer to prayer

>As grateful as I’ve been to have a case manager, and as nice and Jeff is, he complicates my life more than he simplifies it. If my doctor and therapist say up, he says down. His ideas of what is good for me are just completely different from my doctors’, and it confuses me.

The other issue is that he thinks I’m higher functioning than I am. He talks to me and treats me like I’m an adult, then says I’m feigning it when I can’t understand him. He talks too fast and I can’t follow. He uses too many words. I don’t for a second think that I’m unintelligent, but I do have auditory processing issues that require people not to go too fast or use a lot of words all at once, if I’m to understand. He thinks that because my IQ is high, I should be able to do things like remember to eat and make phone calls. He doesn’t understand that IQ does not equate to functional abilities. This is one reason why I’m getting testing done to prove that I’m not really 22 years old, functionally (the other reason being to prove to the SSI judge).

Anyway, I didn’t want to ditch Jeff because sometimes I need him and I definitely need services through him, like an aide to come to my new house to help me. But he was complicating things. Good ol’ Chloe (Chloe, my good friend in Canada who has Asperger’s and a service dog and we have a lot in common!) prayed about it, and guess what?

Jeff is switching jobs at the end of the month, and I get a new case manager! This time, I get a girl, since I want a girl and Jeff thinks he can swing it. Maybe this one will work out better.

I’m hoping!