just life.

this writing thing sure isn't getting any easier. but i want to do it, so i'm going to give it a shot. forgive the scatteredness?

the first thing that comes to mind is new year's eve. it's probably my least favorite day of the year. i mean, i "went out" to a movie with a guy when i was 16, but other than that, i haven't ever gone anywhere or seen anyone. for quite a few years, i've either been crying because i'm yet again by myself or sleeping when the big time comes. today, i'll babysit from 6:30-9 (seven children; two with autism and one i highly suspect has asperger's) so wish me luck. it's been an uncomfortable, antsy week, so it should be interesting.

christmas was mostly really good... my dad gave me a sewing machine to make my doll clothes, my mom got me some cute odds and ends even though she already got me my laptop, and my sister got me my coveted, no-longer-available felicity american girl doll. she's beautiful and she goes even from room to room with me. so far she has a christmas dress and bonnet, a blue button-down shirt and brown polka dot skirt, a blue flannel nightgown and mob cap, and i'm just starting to work on a patchwork quilt for her. i can't say i'm anything wonderful on the machine yet, but i'm getting better and enjoying it.

i'm quite frustrated at myself for not being able to write any sort of cohesive blog post anymore. all i can do is kind of update and go over what's been happening. what happened to real posts? is it that nothing happens anymore, or is it that i just can't write about it?

Take 5

For nearly 18 months (17 and some odd days, to be exact), I have faithfully, every 2-3 days, written a blog post. It's rare that I go more than 3, though I'm sure it's happened.

Before you panic about where this is going, let me explain. This is not a signing off, but rather just a break. I'm facing some demons in my life right now that require my full attention. It's stressful to constantly be thinking about the next blog post. I'll be back. It might be days, or weeks, or months; I might pop back in when something big happens and update you. But for the time being, I'm not going to look for things to write. I'm going to let the writing come to me. Fair enough?

Will you be here when I get back?

Birthday surprise

After a wonderful trip for ice cream with friends, a visit to Mom's office, and a pot roast sandwich at Eat n Park, I headed home so that L could pick me up and we could go to the party (my Esther Bible study was showing One Night with the King at the leader's house). I was freaking out, texting about how nervous I was, when L texted me to say that she was really sick and just couldn't make it. I wasn't at all mad at her, but I started to bawl, because, well, I don't handle changes in plans well.

I had about a half hour to decide if I would still go. The answer seemed obvious. Go to a new place, at night, in the dark, all by myself, with no one even to meet there? I've been studying with these women for months, but I really only know H and L (who wouldn't be there) and the two women in charge (K amd M), a little.

But it was my birthday. I'm 23 now. I don't want social anxiety and autism to get the best of me all the time like it awlays has. Granted, this would be a huge step, because I don't go anywhere besides the church and the library without someone to keep an eye out for me. This would be the first time I truly flew solo maybe... ever?

So I called K, the women whose house the party was at. I asked if she had a pet, kids, or a spare room to escape to. She had all 3. K knows that I have autism and knows a little bit about what I deal with, so when I explained that I typically don't do parties, and never by myself, that this would be really unusual if I came... she said that she had some birthday things for me and would love it if I went, but understood if it was too much.

So I went.

I got here 15 minutes early. I can't walk into rooms full of people, so I get everywhere I go significantly early, and I think people are used to it. As L said, "I noticed that!" K introduced me to her dog, Ruby (a red lab!) and her kids, who are beyond sweet. I hung out downstairs with the dog while people filtered in. When I did go upstairs, I kind of wandered around by myself and didn't talk to people. There was over an hour of free time before the movie started. Finally, a woman who I actually ran into at Dr. J's office a few weeks ago after Bible study (she was there for her sons who have ADHD) came over and started to talk to me. While I can't approach people to talk to them, I'm just fine when people come over to me to talk... sometimes, maybe even a little too friendly.

So I talked for 10 minutes, which was good, for me. K gave me a birthday gift and said she had a birthday cake for me, which was so sweet. She asked if I wanted everyone to sing to me, and I said please no! I hate to be sung to, even by family.

I left around 9:15, an hour before the movie was over, but I was pretty tired. K and M saw me out and said that they were so impressed that I came. I like that they get it and understood how difficult it was. M really kept an eye on me and made sure I was alright. I emailed them both, thanking them for being so accommodating and helpful. I'm honestly kind of proud of myself for facing such a big fear. I can't say that I'll attend Bible study (80 women as opposed to last night's maybe 12) without someone, but it's a big step in the right direction for being 23!

Birthday dreams come true

What's different about 23? Let me tell you a story, not for any sort of sympathy, but so that you understand the importance of today.

When I was 16, my mom and my best friend threw me a huge Finding Nemo surprise party. It had family and friends from all my different activities... school, dancing, color guard, camp. Everyone was there. I was quite sick, but that aside, it was amazing.

Several months later, that same best friend and I were talking online, and she told me to stop talking and quit responding to me (I was confused). We were supposed to go to a party that night, and she didn't pick me up. My best friend that I had spent every day with (vacations aside) for 12 years, for the next year and a half, never called again. When I called her a year and a half after the initial incident, she (frighteningly calmly) said the meanest thing I could ever imagine a person saying, and then meaner. I was bawling, and she hung up on me. That was the end of that.

My closest (and only) friend in college knew this story and promised that it would not repeat itself. It didn't, until she broke up with her fiance and got a new boyfriend and just... went away. Walked away from me on the sidewalk one day (I was on crutches, going slow), with the boy, and never walked back. When asked what was going on, also said some extremely mean things. Again, that was that.

If you're wondering why I don't think Leigh will do the same thing, you don't know Leigh. I mean, there's a lways the tiniest fear in the back of my mind (like, I fear checking my email because I might get a "I don't want to be friends with you" email... but Leigh just would never do that and it's illogical to think she would).

Anyway, back to my story. I think birthdays are the greatest thing in the world. It's a day to celebrate... me! I'm not a big fan of celebrating myself, because I'm shy and rather uncomfortable in my own skin, on other days, so I take full advantage of my birthday. I'm bad at waiting for people to call and give me birthday wishes... instead, I tend to call them because I'm so excited that it's my birthday! Not everyone, but definitely immediate family (just called Dad: "Hey, I'm supposed to call you on your birthday!"). It's a day I can drink as much diet soda as I want, eat whatever I feel like, and bug the kitty as much as I wish. It's my day.

My last 6 birthdays have been spent with my mom, mostly. Last year I actually had surgery on December 8th, so I was drugged and laying on the couch. But I had invited my whole Mom's side of the family over to celebrate, and they all sat on the floor and fussed over me, and I thought life couldn't get any better than that birthday.

Until this year. This year, today, I am going out with friends. H and L, two women in my church, are taking me to an old fashioned ice cream shop downtown. Then, tonight, my giant Bible study is meeting at someone's house to watch a movie (L is curbing my anxiety by picking me up and going in with me and staying with me, so I'll be fine). In between, I will go to Mom's work to be with my mom on my birthday, because that's the most important.

I don't know how to explain the gravity of this event. Friends. I have friends. Friends who are used to melt downs because their kids have them, who are used to anxiety, who don't mind my oddities and social awkwardness. Friends who seek me out and invite me over. Friends who take me out on my birthday. Although ice cream is a huge plus, I almost don't care what we do. Just being with my friends is more than I could hope for.

On writing

People blog for different reasons. Some people do it solely for themselves, to process their experiences and document their journeys.

I am not one of those people. While it's true that I gain a lot from my writings, I don't really write for myself.

I write for you.

I write so that people learn what autism is like and what it isn't like. I write to dispel myth and promote truth. I write to clarify and demystify.

That said, my time as a blogger might be coming to and end. For one thing, my meds are making it really, really hard to write. I still enjoy doing it, but I feel like I'm not delivering when it comes to quality, especially. I have 50 followers on this blog, but I'm not really sure that anyone's reading. And if you're not reading, I don't really have a purpose in writing.

If you are here, if I'm wrong, if you do want to read what I have to say, just let me know and I'm happy to oblige. If I'm doing some good through this effort, I want to know it. But if I'm not, it might be time for me to set my keyboard aside.

Cardboard testimonies

First, watch this.

Powerful, no? I thought so.

This is what we did in church last night. Pastor Betsy only preached for maybe 5 minutes, connecting cardboard testimonies to the end of Romans 8. "No, in all these things we are more than conquerers through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor no the future, nor any powers, neither height nor depth, nor anything else in all creation will be able to separate us from the love that is in Christ Jesus our Lord" (Romans 8:37-38). She said that by preaching on it, she could only bring it down, because the words are so perfect and so powerful. As good of a preacher as Pastor Betsy is, I have to say, no one can outdo the Apostle Paul's words in this text.

So, instead of a sermon, we heard her husband's testimony about his fall into and recover from drugs and alcohol, and it was a great testimony to the power of God in one man's life.

Then, about 10 people on the church staff came up to the front and gave cardboard testimonies. Someone I love dearly, whom I won't name, wrote "From the abusive hands of my dad to the loving hands of Jesus." One of the pastors, who is very open about his struggles, had "Clinical depression/Hope and healing." I almost cried, and I'm not a big crier. It was amazing.

Pastor Betsy asked us to let her know if we would like to share our own cardboard testimonies, and I emailed her to let her know that I would. What would mine say? I'm not 100% sure.

"ASD/GAD/Depression-NOS/SPD/ED-NOS/OCD/TS/panic attacks...

"A lifetime of doubt...

"The whole alphabet and then some...


...created uniquely and loved by Jesus."


What would yours say?

December cheer

I'm getting pumped. Are you?

My birthday is December 9th. I'll be 23. I'm going out with two of my friends (can I say it again? My friends) around noon for ice cream at an old fashioned ice cream shop downtown. Then, that evening, there is a showing of One Night with the King (the movie about Esther) for my Esther women's Bible study. It will be a lot of people, and it's at someone's house and not the church, but as long as one of my friends is going, I think I'll at least try it.

Then, Friday, my family will have cake at Mom's house. Yellow cake with homemade chocolate icing.

On December 17th-19th, I'm going to Emmaus House again. Hopefully this time I don't get sick after 12 hours.

December 21st-23rd, I'm going to Maryland to visit Leigh and Joe.

We're having dinner at my aunt's on the 24th, Christmas at Dad's and dinner at Mom's on Christmas day, and my sister is coming on the 26th (she'll be at her dad's on the 25th, like I will).

I'm working on a Christmas dress for Felicity for when she comes (red with tiny white polka dots, white lace, and white buttons down the front and a red ribbon to tie around back).

Elsie and I have Christmas stockings, little ones, one with an E and one with an L, hanging on the wall at my house. How cute is that?

Mom and I will decorate her house on Saturday and my house on Sunday. Mom doesn't want me to have a tree because I might not stay in my apartment, so I'm going to use Sister's old tiny little tree. But I'll have a real tree if I'm still there next year, which is of course still up in the air.

What are your holiday plans?

Discrepancies

Praise the Lord, my soul. Psalm 103:1


Sometimes, I get really frustrated. (Okay, I know, frustrated is basically my middle name, but bear with me here).

I have written proof that my IQ has dropped with age. As in, dropped nearly 50 points. I was a smart little kid.

What did they do with me? Nothing. Yeah, I was in the gifted program for an hour a week and did an extra project there each year, but academics were strictly regular class time. They basically had me wait for my ability to match my age, and then they started to teach me (beginning with algebra in 6th grade). That's six years of completely wasted time; little to no gains in basic skills from kindergarten through fifth grades. No, I wasn't social, and no, they didn't notice or try to change that. Yes, I had some minor behavior problems, and when I explained that I was bored, they told me I wasn't applying myself.

What if I'd had a diagnosis? Would they have looked at my differently? Sometimes I wonder.

So what are we left with? A nearly-23-year-old who is emotionally and socially much younger, who can't navigate much at all on her own, who spends most of her time alone... but who can't find ways to keep her mind engaged. I am never, ever content to just... be. I have to read, knit, sew, do puzzles, do sudoku, do crosswords, clean, go, drive, walk, shop... anything but sit. Even sitting and watching TV by myself for more than a half hour is rough. I'm autistic, but I hate to be alone. Luckily, I live with the best cat in the world. I could never truly live alone; I'd simply lose my mind.

I'm frustrated that what I could have been is so different than what I am. As the psychologist in charge of the study I'm in put it, I can handle anything academically (unless it's complicated fiction stories that have a lot to do with character!). So why aren't I a doctor or a lawyer or a meteorologist? Why does even the thought of working at Walmart make me need to take a pill or two. Just the thought. Time to move on, or I really will be after some meds...

Is what I am less than, or is it just different? Is the girl who lives on cash assistance somehow less than her stepsister who will be a doctor?

I guess it comes down to this: there is what I am in the eyes of the world, and there is what I am in the eyes of the One who matters. It's not really complicated.



(I can't get the rest of the psalm to paste itself here, and I'm losing patience; do a favor to yourself and look it up though, k? It's so good.)

Friends are expensive!

I love Christmas. I love snowmen, and snowflakes, and Santa (Am I the only adult in the world that still holds onto the slightest glimmer of hope that he's real? Am I? If I am, I'm okay with that.), and red, and green, and decorating, and lights, and Christmas trees... everything! And I love, love, love to choose gifts for people and then give them to said people.

The past quite-a-few-years, my gifts have been limited to immediate family and Leigh, because, well, there wasn't anyone else. Even in college, there weren't friends. I was on no shortage of gift-getting, as my mom and even my dad/stepmom made sure I wasn't left out, but I did feel a bit of a shortage of gift giving. It's so much fun to pick out gifts. Leigh tried to help by including me in her college suite's Secret Santa, but I got her and she got me (and I knew that would happen!), so I just got to give/receive two things for/from her. So much for that.

But this year, do you know what different? I HAVE FRIENDS. It's making Christmas and birthday season exponentially better, not only because I have people to pick out gifts for, but because I get to celebrate with people and enjoy them during the season.

Now, my wallet doesn't so much like this. I'm still living on Cash Assistance and Food Stamps. I know each of my five friends will tell me that I didn't need to get something for them, but of course I did. Mom and I made it work: two gifts are handmade, one is sort of regifted (but not in a cheap way, in a... I love this and I really want you to enjoy it as much as I have, kind of way), one was bought months ago, and one Mom bought for me. A little nontraditional, perhaps, but it's going to work. I just hope everyone loves the things I chose for them. I hope they realize how important each of them is to me and how much this gift-giving represents for me.

Here I raise mine Ebenezer

Then Samuel took a stone and set it up between Mizpah and Jeshanah, and named it Ebenezer; for he said, "Thus far the LORD has helped us." (1 Samuel 7:12)

"Spiritually and theologically speaking, an Ebenezer can be nearly anything that reminds us of God’s presence and help: the Bible, the Sacramental Elements, a cross, a picture, a fellow believer, a hymn – those things which serve as reminders of God’s love, God’s Real Presence, and God’s assistance are 'Ebenezers.'" (link for more information)


Appropriately timed, the things for which we are thankful are also our Ebenezers, as they remind us of God. In traditional Thanksgiving, blogger fashion, I'll give you my list for this year.

1. Always at the top of the list is Mom. She's just the best. Don't even try to argue. Maybe your mom is the best for you, but mine is the best for me, and I love her.

2. Always next is friends. Yes, I can make it plural now, and that's a wonderful feeling. A few of the women at church, one in particular, have really taken to hanging out with me and just making me feel loved, and it's just grand. I haven't asked if I can use their names on my blog yet, so I won't, but I'll tell you that one has two young boys with autism and works a lot with the children at church with me, and another has two young boys, one with some Aspergerish tendencies, at least, and 2 beautiful Tonkinese cats. She's teaching me some piano, and I watched her boys last week. Not to leave out Leigh, who is doing great and enjoying the warm weather in LA. We Skyped last night, and I'm not entirely sure if I liked it or not, but I wanted to try.

3. Always third is Elsie P. Secretly, it's hard put Elsie after friends, because they're really kind of tied. We're back in the apartment, and she meowed all night outside my door. But, if I open it, she comes in and tries to yank my hair out with her teeth, which doesn't feel very good, especially while sleeping. She transitions between houses seamlessly, I'm happy to say, and her stomach is hanging in there on the steroid.

4. I don't know what I would do without my church mentor. She's always there to cheer me up when I need it. She's great at finding little things, like puzzles or Mickey Mouse Band-aids, that I love. I look forward to going to the church and seeing her every week, and it makes my day when she comes to Saturday Night Worship and I get to do church with her.

5. Mom and I are tutoring a woman in English. She is from Korea, and she has two daughters. The younger one is quite shy, while the older is outgoing. D has started to bring K with her to our weekly Bible studies (that's how we're practicing conversation), and she and I are going to go see Harry Potter within the next month. Next weekend, we're going to see Tangled and bringing the moms. It's just such a blessing to have the opportunity to get to know someone, and maybe help them out too. D is teaching Mom as much about the Bible as Mom is teaching D English, and I get to be right there and watch it all!

6. I'm grateful to my doctors and therapists for doing what they do. It's so much more than "just a job" to them. They truly care and it shows. My doctor is a neuropsychiatrist who specializes in ASDs, and my therapist is not an ASD specialist but is just "on my wavelength," as Mom always says. I've been seeing her for going on 3 years. Appointments are a little rough now that Leigh doesn't come, because I don't think I know what to talk about very well, but maybe I'll learn.

7. My new thing: horseback riding! I am still in awe that I got almost a full scholarship to ride for 5 months! I only pay $5 a lesson (in addition to the $12 in gas each time). On Tuesday, I got to go off lead for the first time, and Casper bolted! Well, he started trotting rather quickly. I yanked with all my might, sat my bottom down hard in the saddle, and said, "Casper, whoa." Nothing. After about the tenth time, he did stop, and then got going again! It was really hard to keep him to the outside of the arena when I was pulling back so very hard. Anyway, it was great fun (I like to trot), and I wasn't hardly scared at all.

8. Emmaus House! We've had some very preliminary conversations about an autism group home with them. I think, given that I could keep riding horses and attend church (which they say they'll find a way for horses, and Mom will take me to church every Saturday), I would go. It's not that I can't survive in the apartment but rather that I do better when I'm around people. I'm happier.

There you have it. My Ebenezers of 2010. There are so, so many more little things, but this is just the 8 that immediately come to mind, and I'm not in the mood for 10, so I'm going to stop here. Off to eat some turkey!

This Christmas

This Thursday, we Americans will sit down with our families and tuck into a turkey dinner that provides enough calories for two full days.

Maybe at your table, someone is missing this year. For us, it's my grandma. She was 82 and died of a stroke in May of 2009, and our hearts broke. She made our world go round.

But far away at another table, someone is also missing. This someone didn't get to live to the age of 82, have a family, become a grandparent. Maybe this child never even got to go to school. Maybe she never even took her first steps.

On September 11th, 2001, we lost approximately 3500 Americans in a very tragic way. Every single day, ten times that many children starve to death. I'm not saying it's wrong to mourn the loss of our countrymen, not at all, but who mourns the loss of the child in West Africa, where there is currently a huge famine? Who cares about that child? Are they no less valuable?

I'm not asking you to donate to charity, although if you feel led, please do. I'm asking you to get your Christmas gifts from a place that counts this year. This site is one of my favorites. All the animals we save from euthanasia, all the cancer we cure, all green we go is for naught if our people are dying and can't enjoy it.

You can make a difference for someone. If you can't afford to make a direct donation to help a person in need (and you get to choose exactly where your money goes, from stuffed animals for orphans to school breakfasts to providing chickens for a family), consider buying just one of your Christmas gifts from a Fair Trade source like The Hunger Site. If you're not ready to purchase, just go to the site and click the big yellow button, and a sponsor will donate a small amount of food. It can't get any easier.

God Bless, and Merry Christmas.

Timelines

It's like pulling teeth to write a normal, cohesive post right now. I'm convinced in the lithium. I'll ask my doctor, but isn't it a known fact that people with bipolar lose their creativity when they're on meds?

But here's something that rattles around in my mind sometimes, and I thought I'd share it with you.

I was thinking that autism is more or less noticeable at different times in someone's life. Of course, the specific age-to-noticeability ratio varies from person to person. I'll just explain in my own life...

I can't put a numbe rof years or a percentage or any mathematical formula on my social and emotional delays. I know that at 5, I was probably closer to about 3 (still tantruming frequently, no control of emotions). At 10, I was probably more like 7 (still wanted to play games and with toys when my friends were outgrowing those things). At 15, I was socially about 10 or 11, still wanting one girlhood best friend when the rest of the crowd was into cliques and all that jazz. At 22, emotionally I'm still preteen, and to be honest I can't put a number on where I'm at socially. Kind of all over the place when it comes to different skills. I see my 9-year-old sister pick up on things I don't, but in some ways I'm more mature than a lot of teenagers.

But here's the part that rattles around in that brain of mine. When you're 5 and act 3 or so, it's fairly noticeable. When you're 10 and act 7, though? Not so much. Children mature at different rates, after all. A 15-year-old who is emotionally 10 is quite noticeable again, but a young adult who acts like a teenager isn't that uncommon, so no one really notices.

My mom says... I forget the word she used, exactly... but she says I'm on a plateau, developmentally. I'm not really gaining any new skills, not really getting much better socially, not really becoming any more independent in the last few years.

When you have a 22-year-old who acts like a child, it may be alright, but once I'm 40, people might really notice. That's what scares me. I'm a big fan of blending in as well as I can.

Alright, I'm completely posted-out. Can't squeeze... out... another... word!

Phases

I've kind of been going through a non-writing phase. I'm wondering if the lithium has sort of sapped me of my creativity. I have no desire to work on my book (never got past the interview stage of it) and minimal ideas for blog posts. Nothing is writing itself, they way it used to do. Instead, I strain to find words for thoughts that aren't there. It's immensely frustrating.

I figure I can keep you abreast of my meanderings, anyway. This weekend, I'm going to Emmaus House, from Friday afternoon to Sunday afternoon. It will be good to get out of here. Then, sometime next week, I'll move back to my apartment and bring Elsie. Dr. Sutton says that the Service Provider should have contacted us several weeks ago, so he's off to find out what the holdup is. In the meantime, I'll try to stay busy at my apartment.

Here's what I do in a week:

Monday- help at MOPS at the church, go to another church friend's for a piano lesson, then in the evening help Mom tutor a Korean woman in English

Tuesdays- horseback riding in the afternoon

Wednesdays- Bible study in the morning, the study for 3 1/2 hours in the afternoon

Thursdays- This week I babysat. I'm hoping I can do more of that in the future.

Fridays- Break day. Library, errands, doctor's appointments, etc.

Saturdays- Out and about with Mom during the day then church at 6.

Sundays- grocery shop, watch football, help Mom clean

So as you can see, I'm not at a shortage of things to do. Add to that lots of reading, some coloring, a good bit of puzzling, talking to Leigh on the phone and Chloe online, going to my dad's to see the kids, Christmas shopping, and I have a full week. I don't feel the need to do any more than I am currently doing.

I still haven't reached a final decision about the group home versus the apartment. By moving to the group home, I would give up so much of my freedom. I love every one of my activities, and I would hate to sit around or do unproductive things all day. I would have to give up riding, piano, babysitting, Bible studies, all of that fun stuff, and I'm not ready to do that. But at the same time, I might do much better when surrounded by other people. Granted, they may not be people who will provide intellectually stimulating conversation, as they will have moderate-to-severe mental retardation, but they will be people, and that is a good thing. I think the decision will come down to how many hours of assistance I get in the apartment, and that is yet to be determined. No sense worrying in the meantime, right?

Just to update, I did get cash assistance yesterday; praise God, because now I at least have some income! I am not yet ready to return to work at all, and I'm doing way too well not working to want to mess with that. It's too soon. Maybe with a job coach, maybe in the future. But not yet.

I'm ready to go home now

I'm counting the days until 2 weekends from now when I can go back to my house. Nevermind the fact that the Waiver still isn't processed and I'll have no staff... I absolutely cannot live here much longer. My stepfather was nothing short of ridiculous last night (angry that I only thanked him once for paying $6 for my dinner, and not twice or however many times he wanted to be thanked), and I've just about had it. Every time I think he's being human, he does something stupid and ridiculous again.

Maybe I'll start packing up and going home sooner. I can leave Elsie here for a few days, unless that'll set him off too. Then again, I hate to be at my house without her.

Hm....

In God's perfect timing

Yesterday, I was home by myself all day with the exception of a couple of hours in the afternoon during which I got Mom a Christmas present, spent my free $10 at Kohl's (a hummingbird ornament and a pin for Mom, since she's gotten so much for me lately), and got the mail out at my house. So last night around 7, when Mom and Bob talked about going out for the evening, I piped up, "But Mom, I was home alone all day. I don't want to be home alone all night, too." I understand the need for "them" time, but can't they do it on a day when I haven't been home alone all day, like on a weekend?

Mom and Bob were tired anyway and decided to stick around, so I was content. Then, today in the the car, Mom and I were talking about building my own life, and she said, "Lyd, you can't put all your eggs in one basket." She said she thought I have too much invested in her, and that my life can't revolve around her as it currently does. When I asked for an example, she brought up last night when my only option was to be with her or no one. I said that it's not my fault that Chloe and Leigh and Sister all live so far away and that my friends at the church are married and have children and can't just hang out. I do have friends, just not the hanging out at the drop of a hat kind.

So, as I often do when I have a spark of an idea about something, I emailed Pastor Betsy and asked her if she could think of anyone in the church who might want to hang out sometimes... a high school or college girl or a single woman, perhaps. She can't think of anyone but will keep her eyes open and pray that mine will be opened, too.

All I can say is that waiting on God's timing can be really hard. I want to make a friend and make my mom happy, but I can't do that if God isn't ready to put that person in my life yet. I guess I could try to pull back from Mom a little bit and just spend more time alone, but I would hate that. Yes, this autistic person likes people (as long as it's one at a time!). I can entertain myself for a day if need be, but I don't like to be alone much longer than 24 hours.

One big decision I have coming up is whether to stay in my apartment or move into a group home. Mom doesn't think I'll get more than a few hours a week of help, so she thinks it's time to strongly consider the group home. That would mean giving my cat and riding, because I wouldn't have my car anymore, which I don't think I could do. Those two reasons are enough to make me want to try the apartment again, so I'm probably moving back in a couple of weeks (this weekend is already halfway gone, and next weekend I'm staying at Emmaus House). I wish I knew that, going back, I'd be able to stay there, but I'll just have to try it and find out. Scary, eh?

Praises and petitions

I find myself thanking God so much lately... for the new computer (from which I type to you now), for horseback riding, for the doll I've longed for, for the fact that someone wants to buy my treadmill for more than I expected. Blessings continue to fall into my lap, and I don't know why. Well, I do know that the Lord wants to bless me, and lately He is showing just how true that is.

But I worry. Oh, I worry. I have no income. None. Once my savings is gone (all $120 of it), I have nothing. Yes, Mom got me my computer and some new clothes recently, and yes, I have food stamps so that's at least covered, but the big kicker is gas.

The solution is to go back on cash assistance. We went today and waited for well over an hour, and they were nowhere close to our number. So on Thursday, Mom is going to take me back, right when they open. It's in a bad part of town, where the people tend to stay up late then sleep in, so we're hoping few people are there when the office opens at 9 AM.

It's not matter of if I'll get the cash assistance, as I'm both disabled and not working so it's all but guaranteed; it's a matter of when. What if I can't be seen Thursday again? Or what if they need more documentation? How long can I make this $120 last?

Because my horses are riding on it all (no pun intended). On getting cash assistance ASAP. The horses are an hour away, 1/8 of a tank of gas. I could go to and from church eight or ten times, to the research study three times, in the amount of gas it takes to go to the horses. Mom says it may not be possible to ride.

But oh, if you knew how amazing it was today. Forget therapy; give me horses! Seriously though, they're more helpful than an hour with the best of the therapists I've ever seen. I felt so strong and confident and free in that saddle. Yes, I have a leader and sidewalkers, but I was steering that horse. For those 30 minutes, Casper is my horse. He likes to trot... a lot... so it's a constant, "Walk... whoa... walk... I said WALK! And he's super, super soft. And white (technically though, there are no white horses; they are grey). And so, so sweet.

And did I mention there are cats at the barn, one of whom is a long-haired baby named Molly and doesn't mind being held? Topping of horses with kittens.

At least for today, life couldn't get any better.

Just a bug in your ear

Don't know what to get your child's teacher, therapist, or aide for Christmas? How about a copy of Interview with Autism? Never miss a chance to educate... that's what I say!

While I have your attention, guess who's starting therapeutic riding tomorrow?

Oh, and that same "who" also got her own Christmas gift really early this year... a new HP laptop. Next post should come from it!

Did I mention I can't sleep for all the excitement in my life lately?

Dr. J appointment

First, let me tell you what Elsie P just did (and she did it yesterday too!). She put my computer in full screen mode, and I couldn't get it out. I had to call Dad, who told me to use Task Manager so I could End Task and then open it and try again. It worked. Silly cat!

Anyway, Mom and I went to see Dr. J (psychiatrist) yesterday. It started off okay, with her asking about my recent... adventures, if you will, and we told her what I'd been up to. She was glad the lithium is working and reminded me that I'll need blood work every 3 months (I already need it for diabetes stuff, so this is no big deal). Then, things got a little sour...

She said she thinks it's time for us to consider a group home. I said that the only options are for people with MR who need a lot more care than I do, and she said, "Well, you're not exactly what I would call 'high functioning,' now more than ever. You should be much higher functioning than you are. I don't know what keeps you from living up to your capabilities." That upset me, because I'm doing the absolute best I can, and now she says it's not enough!

Well, she said, "I think it's time for you to consider moving away from Mom. There are AS/ASD-specific houses in the Philadelphia area, and those would be perfect for you." She told us about the organization. I said that I will not move away. No. Way!

Dr. J thinks the apartment was a mistake, that I'm not ready for it and maybe never will be. Mom says I'm "at a standstill" as far as gaining independence goes and have been for years, so she thinks I've reached my peak.

I get the feeling that Dr. J thinks that the thing holding me back is that I'm lazy. As I told Mom, I'm a lot of things, but rarely am I lazy! And when I am lazy, it's little things... really little things. I'm never lazy with the things that matter.

Dr. J wants me to go back to work. Mom says not yet, but that we'll get a job coach (through the Waiver) and maybe I can get a preschool job at my church, where hopefully I would be accepted more and there would be less stress because of the coach. If not at my church, maybe another church. Anyway, that's my job goal. Less than 10 hours a week right now, for sure. The reason Dr. J wants me to work is that she doesn't want me to sit around too much. She says that volunteering isn't enough, that I need to work. Hopefully a church preschool job would appease her.

So even though it's going against doctor's wishes, I am going to go back to the apartment once the Waiver is finished processing. I'm going to have staff a few times a week, hopefully, and have someone come to take me places once a week, if that works out. I'll go to the library, Starbucks to hang out, go to the shelter to volunteer, help out at church once a week, go to Bible study, and go to church and help with the kids, and I'll go to the study on Wednesday afternoons. Isn't that enough?

I'm still upset that she might think I'm being lazy. I'm kind of offended, actually. There are just things I don't do: I'm not lazy, I do NOT lie, and I'm almost never mean. It's just the way it is. So, like Mom said, if people go accusing me of those things, I can know in my heart (and maybe even say to them) that I am absolutely not whatever they say.

Just some stuff

Sometimes posts seem to write themselves. It's like my life is meant to be turned into blog form.

Other times it requires some effort, but I can scrape something together.

And then... well, and then there are times like this, during which there is no glimmer of cohesiveness to my writing. I'm wondering if the lithium has kind of caused the creativity to go out of me, or something, because I just haven't felt like writing, and that, now that is weird.

My brain is going in too many different directions to be organized. I mean, I'm on an American Girl reading kick (Mom and Sister say that if I get half the money, Sister will supply the other half-ish and go to American Girl Place and get Felicity for me for Christmas! I'm so excited! I'm refusing to spend a penny!) because I can't focus enough to read anything more difficult. But I'm enjoying the historical fiction (my favorite genre), so that's good. Still, 3rd-4th grade reading level? I guess if it's not hurting anything and it's making me happy, so be it.

Speaking of making me happy, yesterday at CET (the study I'm in) they mentioned internal yardsticks. Now, the first amazing thing is that I was listening enough to catch that. The second amazing thing is that they mentioned something fairly worthwhile. They said that they prefer us to use internal yardsticks to measure our successes and failures as opposed to the external kind. As much as I agree with this, isn't it difficult to do that? I know I like to compare myself to everyone around me. I get upset when Leigh is "passing me up" or when my peers do things I can't. I'm sure everyone feels this way sometimes though.

Holidays are tough around here. Emotionally, I'm still young enough that I want to participate in all the childhood traditions, like trick-or-treating. I mean, I probably could have gotten by, because I definitely look quite a bit younger than nearly 23, but I'm satisfying myself with the leftover Butterfingers that Mom gave out. It's not so much the candy I want as the experience. I actually stopped trick or treating when I was about 8, because due to the diabetes I had to give my candy to Sister (did you know that Sister has a name? It's Emily. I sometimes call her Sister to her face, too, though).

Driving is presenting quite a challenge lately. I've gotten big time mad people honking at me twice in two days, because I was going the speed limit and they didn't want to. I still feel like it's my fault, and I hate it.

Well, Mom and I are headed to Dr. J. We'll see what she says about this lithium deal.

Homecoming

Things I missed about home:

ELSIE
Mom (although I talked to her 3-5 times a day, everyday)
Computer
Going places
Books (I ran out while there)
Did I mention Elsie?
Naps
Blogging
Comfy couches and chairs
Good food

Things I won't miss about respite:

It being assumed that I smoke/drink/do drugs
Hearing "SMOKE BREAK!!!!!" 8 times a day, starting at 6:30 AM
The train that was a hundred? two hundred? feet from my room and going over a crossing, so it tooted. Loudly. Three or more times every hour, including at night...
Thus, I won't miss sleeping in earplugs AND headphones.
One option for each meal, and if you don't like it you go hungry
Not being able to take my meds exactly on time
Nurses forgetting to give me meds
Being almost made to go to NA/AA meetings every night
The guy that refused to shower or wash his clothes for 6 days
Bathrooms that smell so bad I gagged every time I went in

Anyway, I could go on. It was determined that my problem was never really depression, but rather OCD. Basically, I had obsessive, intrusive thoughts. With depression, people typically want to act on suicidal thoughts. With OCD, the thoughts overwhelm the person, and they might be compulsed to act but they don't actually want to. I was put on a low (about half the usual) dose of lithium, which is used for severe bipolar, schizoaffective, etc. I could tell the difference after about 6 hours of taking the first dose. Now, I only get scary thoughts about 3 times a day, and it's much easier to "change the channel" in my brain. I had a really good doctor!

I did quit my job, however, and will have to go back on cash assistance (which is only $205/month) until I either get SSI or go back to work. I'm not in a hurry. I'd rather be poor that that overwhelmed again.

I'm staying at Mom's until the time arrives such that I can get staff at my apartment. Not sure when this will be, but, whatever. I'm fine in the meantime.

During the day I have to find ways to stay busy.

Elsie is super happy that I'm home. I hope Mom is too. Don't really care if Bob's happy or not... well, okay, I do care a little.

Sorry for the vagueness of what I'm about to disclose, but: I've been prayerfully considering doing some sort of advocacy for a long time, and an opportunity has sort of fallen into my lap, but it requires nomination, application, interview, etc. I have no idea if I'm what they're looking for, but it would be pretty cool. If you could send up some prayers that maybe something would come of that, if that's what God wants, then that would be awesome. I'll let you know more about it if I hear anything.

Just checking in

This post won't be exciting. I'm limited on time.

I'm currently staying at a mental health respite center. Most of the people there are coming off drugs and alcohol as well.

Most people think I'm weird. One guy kind of makes fun of me for liking Disney. It's not a big deal, but it upsets me.

We have a computer and Internet access, but every. single. website. is blocked, so it's useless.

The problem turned out to be not depression but OCD, and I was put on lithium (a low dose, 300 mg). I'm honestly quite fine now.

I should be out November 5th. 9 days.

Decisions

I have a big decision to make, and I don't have long to make it.

I know I'm not safe at home. If I knew that, say, on Monday, I could go to respite, I think I could make it. But I don't know. It could be weeks.

So my only other option is the hospital, and I'm leaning toward going, but I'm still not positive. Mom said she'll take me down anytime during the day, just not at night, because the DEC (emergency) is a nightmare at night. She's going to call me when my aunt gets to the office (family business) for my decision.

I'm halfway packed.

If I knew I'd end up on a good floor (young adult floor, depression/anxiety floor) I'd go, but I don't know that. I could end up on the autism/MR floor, which is wracked with the stench of urine and has people screaming 24/7. Not a place to get better. Last time I went, they said I was too "high-functioning" (not my favorite descriptor) for that floor, but what if the person doing the intake doesn't say that this time? What if there are no beds on the floors I like? What if, by asking, I make her think I'm a beggar (as in, can't be chooser) and tick her off?

I don't know what to do...

Tea and things

Sometimes, I like to think that someone out there in Blog World is just sitting at the edge of her seat, biting her nails over what will become of the whole respite/hospital/home situation. I like to pretend that I'm interesting, sometimes...

But really, things move slowly. Today, George from the Bureau of Autism came to the house to do the SIB-R (an interview) about what I can and can't do, to see what services I need. It's funny how I can do some pretty complex things (provide a written report on an article from a technical journal, for example) but struggle with things like saying please, thank you, hello, goodbye, consistently and reliably. Mom's commentary: "That's the autism."

Reliable. That's my problem.

What I can do on a good day is so different than what I can do on a bad day. On good days I can definitely work. But then the bad days come, and I have to quit my job. So do I never work? It's not really fair to an employer to only be function 10 months out of the year, you know? Sigh.

In other news, Sister joined the junior board for Quality Services for the Autistic Community (or something like that) in NYC. She is also seeking to volunteer at the mental health ward at the hospital. Sister really tries. She's cool like that. I hope that I can take a page out of her book and do some volunteer now that I'm not really working.

I wanted to tell you that I have fallen in love with tea. Just regular, decaffeinated Lipton's, black tea. With milk and 1 1/2 big spoons of sugar (it's sweet, I know). It's delicious. I drink it multiple times a day, and it works just like a Klonopin. I swear. It calms me right down. So that's my new thing, tea. Now if my stepdad would stop yelling at me for slurping my tea, we'd be in good shape. Or if I could just get back in respite, where I could slurp as much as I want, and no one cares...

Say it with me

I say: God is good!

You say: All the time!

I say: All the time!

You say: God is good!

Or if you're the founder of Emmaus House, Lorraine, you say what her aunt told her when she was younger: "God is good and He said He would!"


I have no idea in which direction my life is headed right now. All I know is that my funding ran out today and I'm back at Mom's with Elsie P. I don't know what tomorrow brings.

I do know that Lorraine and the head of the Autism Waiver, Dr. Sutton, are working very hard to pass my Waiver paperwork through ASAP and get me back to Emmaus sometime this week. But that's not definite... just what everyone is hoping for.

I don't know if I'll ever move back into my own apartment, as much as I love it. It might be manageable with frequent staff (like all waking hours), but not how it was. I just fall apart too quickly when I'm alone so much.

I don't know if I'll go back to work anytime soon. I'd like to stay on one day a week, but if I'm staying in respite for more than a few weeks at Emmaus, Mom's not sure it's a good idea to stay on at all. That would mean literally no income. None. Nothing. Nothing from the government right now, either. But then, in respite, how much money do you really need? Your food is paid for, gas is paid for, all the big things are covered. If I do quit, I hope it's on good terms so that someday, when I'm in my own place with staff, and Boss has an opening, she will hire me back. That's the goal.

The hard part is that what I'm capable of on a good day is so great compared to what I can do on a bad day. And there are different sorts of bad days. There are days where it is hard to move (I get anxious if I'm not in "my spot"). There are days when I don't eat much. There are days when I'm just horribly depressed. Regardless of the sort of bad day I'm having (autism bad day, anxiety bad day, depression bad day), it helps to have other people around, so respite is a good thing.

I'll keep you updated, and remember: God is good!

Hoping for a miracle

Well, things can never be easy.

My funding for staying at Emmaus runs out Sunday. The Waiver, while approved, hasn't really been set up and so cannot pay for much at this time. They're trying to expedite the paperwork so that funding will come through. Insurance won't cover it because it's not mental health, technically (though they will cover a much, much more expensive hospital stay) and MR services won't cover someone with autism. I'm betwixt and between, just like always, and no one knows what to do with me.

So I probably go home, back to my own house, Sunday around 5pm. Getting me out of my environment helped a lot, and I'm safe here with staff. But can I really go from full-blown suicidal to ready to go back to my apartment in four days? That's what they're asking me to do.

In the meantime, it's wonderful here. There is no therapy, but I don't need therapy right now. I need to be safe and calm and let things blow over. Then, and only then, will I consider therapy. Maybe that's not the way "they" like to do it, but that's what works best for me.

Please send prayers my way. I know I just asked, but I need to ask again. I'm scared about what will happen, and I don't want to go to the hospital. I want to stay here for a week or two and then go home (with staff at my house). Why, why, why can't I just get what I need?

Good ol' Boss

I was super nervous about my job. Mom called my boss to give her a vague "she needs to be hospitalized, probably for about a week" (not that I'll be home in a week, but I can go back to work from Emmaus then). Took her a day and a half to call back, but Boss told mom that I'm a good worker and to take the time I need then just give her a day or two's notice and she'll put me back on the schedule. Mom said she couldn't have been nicer. I hope a week will do it.

I'm sooo nervous to go to Emmaus House. What if I don't fit in? I mean, I know I'll be more independent than a lot of what they're used to. They told Mom that they'll evaluate me to see what program to put me in, and that I might not be recommended to go back to my own house after respite, but rather a supportive apartment with staff. Time will tell. I'm fine with a different house, but I want to keep Elsie with me.

So basically, if you could send some prayers my way that I get to stay close to my kitty, I'd appreciate it. She'll stay with Mom (where she's totally fine and loved and everything) while I'm away. I'll miss her, but I won't worry about her one bit. At least, I'll try not to, because I know that it's completely unnecessary...

Emmaus House

Well, it's been 10 months. Last time I only made it 7, so this is good. In lieu of heading back to the hospital, I'm going to a respite center for people with MR and ASDs. It should just be for a few weeks. I can go to work from there and everything, although I'm hopefully going to take a week off and get my feet back on the ground. Elsie P will go go Mom's. Leigh will still come to visit before she leaves for California (and she will bring Felicity, the American Girl doll who is going away forever and thus I'll never get her because she's expensive, but I'm just over the moon to hang out with her for a while...).

I will have my cell phone, my regular clothes, access to a computer, my weighted blanket, Tigger, access to my own toiletries (trust me, this is huge, lol)... even my own room.

Will let you know how it's going when I get there!

For Amanda

Leigh and I making silly faces. Neither of us really knows how to do that, so it comes out even more ridiculous.

The street in town, where the parade came. I forgot I had my camera during the parade, though...

Disclaimer: I hate this picture of myself. But Leigh says I'm "really" smiling, and Chaos (the cat) looks fantastic, so I had to put it up. Chaos is one of the cats in the music store in town. He's 16 now and can't see very well, but I love him. I came in after not seeing him in 7 months and he ran over and let me pick him up and puuuurred and licked my face. Most of the day kind of stunk, but Chaos was good old Chaos :)

Rules to live by

1. Don't post when you're angry.

2. Friends don't ditch.

3. Friends aren't mean.

4. Causing hurt does not fix hurt.

5. Pick a picker ball (see Jess's post here), not skin.

6. Pretty is as pretty does.

7. You can have more than one best friend.

8. Different, not less.

9. When in doubt, hold Elsie.

10. Leigh's not a jerk; don't treat her like one.

You're beautiful

As I was driving back from Mom's for the second time (I got home, and immediately she called with the 9000 things I'd forgotten), I heard this song on the radio. To be honest, I'm glad I had to get back in the car to meet Mom so that I could hear this song tonight. I'm not going to go into some big long discussion of it, because I think you'll be able to see why it meant a lot to me. I hope it blesses you, too.

MercyMe, Beautiful

Days will come when you don't have the strength
And all you hear is you're not worth anything
Wondering if you ever could be loved
And if they truly saw your heart
They'd see too much

You're beautiful,
You're beautiful
You are made for so much more than all of this
You're beautiful,
You're beautiful
You are treasured, you are sacred, you are His
You're beautiful

Praying that you have the heart to fight
Cuz you are more than what is hurting you tonight
For all the lies you've held inside so long
But they are nothing in the shadow of the cross

You're beautiful,
You're beautiful
You are made for so much more than all of this
You're beautiful,
You're beautiful
You are treasured, you are sacred, you are His
You're beautiful

Before you ever took a breath
Long before the world began
Of all the wonders He possessed
There was one more precious
Of all the earth and skies above
You're the one He madly loves
Enough to die!

You're beautiful,
You're beautiful
In His eyes
You're beautiful!
You are made for so much more than all of this
You're beautiful!
You are treasured, you are sacred, you are His
You're beautiful!
You are made for so much more than all of this
You're beautiful!
You are treasured
You are sacred
You are His

Unsorted sorts

I hate that nagging feeling. It's been a few days. Come on. Write.

The truth is that I don't want to write. I don't want to process. I don't want to feel.

I want to be locked away to be alone until this thing passes. Heck, the way I've been acting, I fully deserve to be locked away. Throw away the key, even. Leave me there until I can be human, or something like it.

To top things off, work is complicated socially, and Elsie and I are forced to spend the week at Mom's because my car needs to be repaired, thus making me carless and dependent on Mom for getting to work. My computer is on the tiniest little too-low end table, and my back side is on a rickety old dining room chair from perhaps 1985. Elsie is handling things far better than I am.

It's probably in your best interest to stay far, far away from me right now. If you choose not to heed my advice, don't say I didn't warn you.

Broken

Excuse me for posting on the brink of a melt down, but I don't know what else to do but write.

I've had type I diabetes since I was 3 years old. There came a time when I was in my mid teens that I had this huge realization: It was never going away. Ever. As in, lifelong. I did the whole rebellion thing, tried to pretend I didn't have it, yada yada yada. Now I pay for those years with neuropathy that (surprise!) will only get worse with time.

But I digress (good at that, you know). When I first got my ASD diagnosis, I was so excited. Finally, a name! A reason! (I mean, I'd been given reasons before, but none that remotely made any sense). Now that I had a reason, I thought I could fix it. Yeah yeah, I knew all that stuff about autism being incurable, but I thought I could smart my way out of it, you know?

And that's how I began to approach life 2 years ago, when I was diagnosed. I began to figure out every deficit I had, to mull over symptoms, and to make lists. Why? So that I could ameliorate it all. Find the loopholes. Think my way out.

After 2 years of this, I'm in so deep I can't get out. I'm constantly trying to fix something about myself. To be honest, the research study I'm in adds greatly to this self-defeating train of thought. Examples:

Can't read facial expressions? We'll break them down feature-by-feature, describe each of the "big 7" using a paragraph. Good, now memorize the paragraphs and the faces. Got it? What's this one? Close... try again. No? Okay, what's this one? And so it goes....

People with ASD are known for being absorbed in themselves. Today we'll learn how to give support. Think "WHAT:" W- Warmth and Empathy, H- Hopefulness, A- Acceptance, and T- Take the person's perspective. Here are nine billion examples; come up with a supportive statement incorporating WHAT for each one.

Now we're going to learn how to "take" someone's "emotional temperature." Are they "hot" or "cold?" Who is hot in your life? How do you deal with that person? Is that an effective way to deal with them? Let's make you more effective.

You know, in these exercises you've been doing, we've noticed that you don't really make eye contact. So now, you're not allowed to talk unless you make eye contact, k? That'll fix ya up real nice.

Wait- you mean you're not using this in real life? What's wrong with you? Come on, already!

Fix. Fix. Fix.

Fix my skin (I pick at any little imperfection to the point that I've ended up with a secondary infection in the form of can-be-fatal MRSA. So Mom's making me go back to the dermatologist to put me on "something stronger" [birth control and prescription creams not having worked] so that my skin clears up so that I don't pick. What they seemingly refuse to understand is that I'll just find something else to pick...)

Fix my behaviors. What can we do so you don't stim in church? What can we do so you don't melt down? What can we do so you don't hurt? What can we do so that you make better eye contact?

Fix my thoughts. Don't be angry. Don't be sad. Don't be that word that I can't for the life of me nail down (but I can point to it on my emotions chart, found here), which is useless right now as I'm home alone and can't point to it for Leigh or Mom or anyone who can help.

Um, hang on, I need to melt down.

Anyway. Back to your regularly scheduled program...

Fix. Fix. Fix.

I'll give you this: I'm the source of a lot of this wanting to fix. I mean, I get it from therapists and doctors and Mom, but probably only because I initiated it. Everyone, thus far, has been under the impression that I want to be fixed.

Will life really be any easier if I become more socially aware? I think it'll just mean noticing it more when I don't fit in...

Will I be any happier if I can read facial expressions or make eye contact or whatever?

I don't like things being broken down and torn apart so that I can understand them, like with the facial expressions. I don't like being corrected every left turn. Don't rock your chair. Don't tap your feet. Eyes. No, you have to listen sitting down, not standing up. And, darn it, do you really have to drink so much diet soda?

Don't get me wrong, either; I'm all for self-improvement, but only to a point. When can a person just... be?

Maybe I should make my decisions more carefully about what to improve. So far, it's been "fix anything that means I don't fit in," but that's just not working out. A mild wide and an inch deep, it is. What if I pick one thing at a time and let the rest just be? Or what if I focus on fixing only the things that are making my life uncomfortable?

Or, here's one for you, what if I only fix what God would have me fix? Don't ask me how I'll sort that out or make those decisions, but doesn't that sound better? For example, nowhere does God's Word say "Thou shalt make eye contact." Anywhere. Promise. It does, however, say to trust in the Lord with all your heart, and how am I really doing at that? I'll give you a hint: If I truly trusted God with all my heart, this melt down would never have happened.

Maybe if I take the things God would have me improve upon, pray over them, and consider just one thing at a time... inch wide, mile deep, if you will... I don't know. I'm just thinking.

I'm not sure where this leaves the research study and all its fixing. I mean, I'm halfway through the 18 months and I sort of committed to them... and I'm not saying I think what they're doing is entirely wrong, just maybe bad timing for me. Sigh. The greater good or... my good?

I think I've beat this duck as dead as it'll get. And I didn't answer any questions... sorry. I usually wait to write posts until things sum up nicely.

Not this time.

One year

Do you remember this post about last year's pumpkin?

On Saturday, Mom and I went to a local farm to nose around. While there, I got my big pumpkin (okay, it's not that big; it's a pie pumpkin, but it's perfect for my little house). Once again, I just couldn't resist the little pumpkins. I sought out the tiniest one (believe me, it's small) and made my $0.81, with tax, purchase.

In case you're wondering, thus far, I'm not quite as firmly attached to the little guy this year as I was last year, but I think in general I'm also much less anxious.

But the new pumpkin got me thinking... that was a year ago. A whole year. Think about how much has changed.

A year ago, I was working in the photo lab, feeling no sense of purpose in my life. Now, I work at the animal shelter and feel much purpose in what I do.

I was working on my book daily. Now, said book has been published and is being read around the world, though not in great quantities.

I hadn't even found my church. I was driving the hour up to my college once a month to go to the Anglican church with Leigh. Now, I'm settling in with Mom at the new church... still trying to find a place where I belong, though.

A year ago, Leigh was just starting her senior year and was just an hour away. Now, she's 4 hours away, working, living at home. Those first 6 months or so after graduation are pretty tough, aren't they?

Mom hadn't even thought about me moving out yet. Now, I'm in my own apartment with Elsie P!

We hadn't even heard of the Autism Waiver. Now I'm about to start services.

I was between hospital visits (one was in July, the other in December). I haven't been in the hospital in 9 months now!

So, obviously, a lot has changed in a year. 525,600 minutes. A few hundred hours of medical transcription. About 150 blog posts. A couple of hospital visits. One apartment.

Makes me wonder what next year will bring! Also makes me think that I should have saved this post for December 31st...

Have you heard?

Adults on the spectrum are really getting up in arms about the DSM-V.

Oh, you say you haven't heard? They APA is proposing to do away with Asperger's Syndrome.

Now that's a short life for a disorder. Asperger's, its tomb stone will read; 1994-2012...ish. Because let's be honest, we don't know for sure when the new DSM will actually come out.

But people sure as heck have latched onto the name. Aspies (shudder). Aspergians. Call them what you will. Personally, I refuse to call them anything but people with Asperger's (Syndrome). I think changing the name of a disabling disorder to make it cute and fun is ridiculousness. I feel the same way about people calling diabetes "'betes" or "the 'betes," as kids and counselors used to do at camp.

Now in case you're shouting and flailing at your computer, "But you can't speak on this subject! You don't even have Asperger's!" Well, if you want to be very technical, no I don't. But my neuropsych's office isn't all that technical. Rather than basing a diagnosis on early development (i.e., taking into consideration early language acquisition or acquisition of self-help skills), they look at the adult's current language skills. And now, I very much fit the bill of Asperger's, so that's my diagnosis at that office.

Now that I've got all the preliminary stuff out of the way, let me go on to explain my thinking about the recategorization of ASDs in the DSM-V.

Point 1: Asperger's and autistic disorder have much more in common than not.

Point 2: The age at which a child develops language or given self-help skills is an extremely poor indicator of that person's command of language or self-help skills as an adult.

Point 3: I keep hearing adults with Asperger's who argue something like this: "But I don't want to be lumped in with them." Them being "low-functioning autistics." Just as I do not believe in "Us vs. Them" in terms of autistic and not autistic, I (perhaps unsurprisingly) dislike even more the proposal of diving up the autism spectrum on an Us vs. Them basis.

Point 4: Not all people with Asperger's are more independent, more intelligent, more social, more... you name it... than people with autistic disorder. I know many people with Asperger's who can't hold down a job, carry on a conversation, or graduate from high school. I know people with autistic disorder who supprt themselves financially, live completely independently, and hold a college degree.

Point 5: If someone is that bent on dividing up the spectrum, then why pick early language acquisition and self help skills? Why not:

- absence or presence of mental retardation based on standardized IQ tests?
- hyposensitivity or hypersensitivity to sensory stimuli?
- level of verbosity as an adult?
- ability to live independently or the lack thereof?
- absence of presence of early regression?

Point 6: Who honestly wants to tell anyone that they have assburgers? Suddenly, that Aspie thing isn't sounding quite so bad...


I don't think that we've hit the nail on the head with ASDs as of yet. Now, I have not thoroughly researched the topic, but I'm leaning toward the idea that there is not one autism. Rather, I'm wondering if there are not various autisms.... environmentally-induced, vaccine-induced, allergy-induced, prematurity-induced, etc.

But until we can figure all of this out scientifically, and from that I think we are many years away, we have to stick with the idea of syndromes, or a collection of symptoms, regardless of cause. Because we can't differentiate based on cause, all we have is the results, the symptoms, by which to diagnose. People who, more or less, have the same symptoms have the same syndrome or disorder.

And I think autism spectrum disorder is the best we can do with what we have.

Not a fun subject

A lot of misunderstanding and myths surround autism in general, don't you think? Genetics. Diets. Treatments. Number of hours of therapy. Intelligence and testing of such.

I think that one highly misunderstood topic is that of violence, either against self or others. Although it's not an across-the-board thing (as in, it's not as if every person on the spectrum is violent in some way, by any means), it's definitely more common among those with ASDs than it is among those without.

I was always a biter. I would bite the back of my hands when I got upset or overwhelmed as young as 2 years old. I even have dreams about biting other people (I had one last night!) in anger. While biting to the point of injury has long since stopped, I still have a marked tendency to "chew" on my hands when I'm nervous.

Personally, my lashing out at other people stopped around age 10-12. I would hit, bite, and push other people when my emotions got out of control. I wish I could say that I got better control over myself and that the problem was solved, but that's not the case. Just about the time my violence toward others ended, the self-inflicted injury picked up.

Therapists called it a lot of different things. Anxiety. Borderline personality disorder. Pre-cursor to full-blown schizophrenia. Everyone had an opinion.

But it wasn't just when I was anxious, and it wasn't a plea for attention by any means, and I certainly didn't have any of the positive symptoms of schizophrenia (just the flat affect, flat tone of voice, and lack of eye contact). Basically, it was all just missing the ASD.

So I thought I'd clear things up once and for all. Why do I hurt myself and (once upon a time) other people? What's going through my head? What can be done to stop it?

Why? Because my emotions are beyond my ability to express them. This can be anxiety, nervousness, (I'm bad at this...)... uh... anger, I guess, frustration, and I'm not sure what else. Naming emotions is not my strong suit.

What's going through my head? White. I get white in my head. As in, no thoughts, no words, no organization... just white and twisted and crying. I'm a cryer. Also, fix it. I've long ago learned that I have a tendency to hurt, and so now, in an attempt to avoid that, I want to fix it quicky as possible. Fix whatever is making me upset. That's easier said than done, because I sometimes don't know what's upsetting me, or other times whatever it is isn't fixable.

What can be done to stop it? Holding the cat works wonders, but at my worst, I get afraid that I'll hurt her, and that scares me to death. I have fairly significant OCD... namely in the form of intrusive thoughts about hurting other people, things I know I'd never do. I also think of the worst thing I could say/do in given situations. These intrusive thoughts are upsetting, but the best thing to do is to infact hold the cat and show myself that I won't hurt her.

Help with my words helps a lot, too. Usually, if I can find a way to express whatever it is that's bothering me, why, and how I'm feeling, then the urge to hurt significantly diminishes. But I need help to do this, sort of a step-by-step guide and answering concrete questions in order to label my emotions.

Reminders that I'm okay, that it will pass, that hurting is not an option (all Magic Words) helps, too. I usually can't come up with these on my own, but Leigh is good at reminding me, and that goes a lot way.

So, I don't know what else to say on the subject, but if you have any questions I'm happy to try to answer them. Either leave a comment or email me (autisticspeaks@gmail.com) and I'll see what I can do.

Please hold

Bear with me while I mentally process something I want to write about, please.

In the meantime, here is Leigh looking like a cool duck in "our" sunglasses :)

Ways to make one autistic girl smile

This post is an attempt to think of the good things in my life. My doctor doesn't think that my depression needs to be treated, per se, but that I need to do some basic "perking up" things and reminders of the good things in life. I completely agree and am thrilled that the psychiatrist didn't jump on increasing medication. So far my attempts are paying off very well.

So....

1. New pictures of Joe (Leigh's cat), or your own cat. Last night I got one of Joe doing loaf of bread, and I loved it.
2. Anything new and exciting... a new smell-good candle for my house, new blue zebra-print sunglasses, new Bible study, new friends.
3. Go somewhere. Anywhere. I like to go places. Tomorrow, we'll go to Penn's Colony, a historical "town" and folk art show. I'm so excited.
4. Go to church.
5. Kiss the cats at work. Especially Grace, who loves to be kissed.
6. Let Sofia Loren (a b-e-a-utiful cat at work) stand on my shoulder like a parrot. I can't hold back the giggles when she does it.
7. Take a nap!
8. Make my bed in the morning and then crawl in. I swear, it makes the weighted blanket even heavier when it's been "made" all day.
9. A email. From anyone. About almost anything. My favorites are parents who have kids with autism who write to encourage me. They go suuuuch a long way. Also emails from Leigh with Lolcats. Those are fantastic too.
10. A freshly-memorized Bible verse to add to the list. The one that is officially "memorized" today? "As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. Be completely humble and gentle; be patient, bearing one another in love." (Ephesians 4:1-2)
11. A cold diet soda never gets old!
12. Making something. Again, anything. Most recently I made a velcro itemized morning routine schedule. I left the house without make up once or twice (I wear very little; just enough to cover any red spots that Mom insists are due to rubbing the cat on my face and I say then it's worth it... but I feel funny without my spots covered) and without testing my blood sugar a few times, so I thought it was time.
13. Phone calls about updates from the Autism Waiver. We're getting close...
14. The specific food that I'm craving, right when I'm craving it. Cheesecake. Pizza. Mexican. All of which have happened this month! (Note: At least temporarily, I'm not gluten free, as it's so expensive. I may well go back to it if ever I have the money, though. So far, reflux and rashes are nonexistant... this is probably because I eat just one thing with gluten in a day. I'm just not buying any GF stuff).
15. Tigger. Remember Tigger? He's been living with me since sometime this summer. He sits on my computer desk and reminds me of Leigh, and I like him. A lot.
16. My duck. My aunt got me a duck statue from the garden store, and he, too, sits on my computer desk, right next to Tigger. The duck makes me laugh, because it's a duck and... there I go on ducks again.
17. Elsie, especially this morning, because she was using her paw to get a chunk of my hair in her mouth and then going... YANK! Then letting it go. A bunch of times. She had food in her bowl, so all I can figure is that she wanted me to get up. Now, I might add. You just can't get annoyed with such a cute kitty.
18. Losing a half pound a week for almost 6 months by doing absolutely nothing. It's totally fair though, because I gained a lot of weight by doing absolutely nothing.
19. Puzzles that I can do in one sitting.
20. Really stuck now? Oh, I know...

You telling me what makes you smile. That would be great.

Only one thing to do

When you're suffering from some situational depression, there's only one thing to do.

Why, go to Kohl's and get blue zebra print sunglasses (that just happen to fit over your regular glasses...).


But there's a bit of a story behind these sunglasses. You
see, when Leigh got them last weekend, I absolutely fell in love. They're not just blue, they're almost teal. And they're zebra print. And you never can find sunglasses that slide effortlessly over your regular glasses. But these do!

But they're $10, and Mom told you that you can only buy food and gas for the next few weeks, because you're even poorer than usual. So, while you mention to God that you would love said sunglasses, you pretty much give up all hope.

Until you go to Mom's one evening and she gives you a $10 gift card to Kohl's that came in the mail.

And even though they shouldn't honor it until the 15th, and this was only the 13th, they say they'll honor it anyway.


And your blue zebra-print sunglasses are only $4.80 now.

And did I mention that they're zebra print? And blue?

And while you're not entirely sure how she feels about matching you, the fact that they match Leigh's makes you smile.

And now, that depression is just a little bit lighter.


Sometimes, God really pulls through in the details, eh?





(Excuse the blurry picture; all I had was my phone)

On your mark

"So since we find ourselves fashioned into all these excellently formed and marvelously functioning parts of Christ's body, let's just go ahead and be what we were made to be, without enviously or pridefully comparing ourselves with each other, or trying to be something we aren't. (Romans 12:8ish, The Message)



Okay, so I realize that I don't write exclusively to a Christian audience on here, but I think everyone can glean something important from the above verses, don't you? Especially the italicized part (that's why they make italics... to emphasize or drawn attention to a certain word or phrase, eh?).

Now that I'm done cracking myself up (and I'm doubting anyone else thought it was funny)... I can hear your head, saying, "Lydia, make your point already!"

I'm Lydia. I'm not Mom, I'm not Sister, I'm not Leigh, and sadly, I'm not Elsie. That means that I can only be what I was created to be and glorify God the way that He intended for me to do so. I can't try to grow flowers like Mom and wonder when I come up failing. I can't try to live my life like Sister, with her NYC clothes and money, and wonder why I fall short. I can't try to relate to people like Leigh and then wonder why it doesn't work.

Perhaps closer to home, this also means that I can't try to have boyfriends like seemingly 98% of my peers, can't try to work full time like most people and earn lots of money, and can't try to take jobs any number of miles from home, like a lot of people I know have done in the year or two after college graduation. I can't try to get married, have babies, get a dog, teach... the list goes on.

But here's the thing (isn't there always a thing? I seem to say that a lot...).

I can help mothers, fathers, sisters, brothers, and teachers reach seemingly unreachable children. None of my friends do that.

I can comfort a cat whose only comfort is the fact that, wherever it goes, it still has a litter box (and will even sleep in it for security). I can love each and every cat at work as an individual, in a place where as one in a hundred, they have lost all individuality. No one else at work does that.

I can write, publish, and sell my own book. First time in my family anyone's done that.

....

Interlude

Forgive me for stopping in what feels like the middle of a train of thought, but let me explain. As I was telling Leigh tonight via Skype chat, I don't always know a lot about myself. I don't know if I'm quiet or loud, thoughtful or inconsiderate, patient or impatient. Most aspects of personality and character, especially when it comes to myself, completelye evade me. This holds true for others, too... I couldn't tell you much about Leigh, either, other than the fact that she's Leigh and I don't want her any differently. But outstanding qualities and characteristics? Uh...

I'd like to add to this list that I have this outstanding character quality or that fruit of the Spirit, but the fact of the matter is, I don't rightly know what I am or what I have. The note to self has been made to work on figuring that out.

....

So I pick up where I left off. In Romans 12, Paul says that we are all part of Christ's body (which leads me to wonder if I'm a toe, or an eye, or a liver, but then I might be thinking too literally). Elsewhere, he questions us thusly: wouldn't it be ridiculous for the toe to fuss that it's not a hand, or the heart to complain that it's not the stomach? I don't want to be kind, talkative, social, and a good singer... why can't I be like her, instead?

Isn't that exactly what I'm doing in all my fussing? I don't want to be autistic, a writer, a blogger, and a cat-lover... why can't I be like Mom/Sister/Leigh, instead?

I can't have what they have for a simple reason: I have what I have, and that is no less wonderful, providential, and intentional.

It is just thus for you, and you, and you. You have a purpose that only you can fulfill. You were perfectly created with just the gifts, talents, and abilities to fulfill that purpose. God ordained it before time began... when it comes to your purpose, you cannot fail.

Isn't that a comforting thought? Let me say it again: You can't fail to fulfill your purpose in life. You don't even have to know what it is in order to accomplish it! Oh, sure, you might end up doing a lot more good along the way if you sort of take inventory of your qualities and capitalize on the best ones, but you can't fail to bring to fruition the very reason that God created you.

So rest easy, my friend. Take heart in the part of the body in which you reside; we would not be a complete body without you. You are not more or less than the toe, the hand, the heart, or the liver. You are you.

So let's just go ahead and be what we were made to be.

Ready?

Go.

Here we are, falling behind

The older I get, the more I fall behind, and I don't like it one bit.

Now that I'm in my early 20s, my friends are going through bigger changes than ever before. Many are getting married. Some are starting families. Some are moving far away from home.

I can't help but feel left in the dust. I'm living in my own apartment, yes, but I'm only ten minutes from my mom and I see her 3-5 times a week. I couldn't do it without her.

My biggest fear is Leigh getting married. I know what happens when people get married: they don't need friends anymore. You can't get them by themselves; you always get the spouse too. I just know she'll forget about me (yes, Leigh, I hear your voice saying, "I'm not a jerk, don't treat me like one"). And this moving across the country to be near a certain boy sounds might fishy to me... like it's on the road to marriage. My biggest fear is underway.

Part of it is the fear of losing her, and part of it is a twinge of jealousy that it's not me. Don't you know what I was supposed to be a surgeon and live in the South? That was my childhood dream. Autism has ruined that dream, confining me to stay near Mom and work part time at a low-paying job, likely for the rest of my life. Part of me is happy to be doing as well I am (er, was...), but part of me remembers what I'll never be and wants that. Part of me wants independence, money, a husband...

Oh, husbands. I keep praying that I'll find one. The truth is that the idea of being married (and dare I say it? sex) appalls me and I want none of it. But it seems to me that the only way not to be lonely in life is to have a husband. Friends come and go, parents pass away, but husbands are forever. I need someone who will love me for life. Who I know won't turn away. I know, I know, Jesus does that, but I mean someone on this earth. You can't deny that everyone wants that. That's part of why people get married, isn't it? That's why I want to get married. If I knew Mom or a friend would be there forever (realizing that God could really take anyone away at any time, but you know what I mean) then I wouldn't want a husband. But it's not so.

But what husband would want to marry (or even date) a girl like me? I can't imagine one that would. And is it really fair for me to marry someone? I mean, I pretty much don't like boys. I got nervous around a boy in 8th grade and couldn't speak... was that liking a boy? If so, that's the only time I've ever liked one. Never since. It doesn't sound fair to marry someone you don't like. That's not to say I couldn't love someone, just that there is absolutely no sexual attraction.

Sorry for the deep thinking and lack of answers today. But, this is where my head is, and you agreed to come on this journey with me, wherever it took us, right? So this is where we are right now, quickly falling behind, worrying, and confused.

Sounds like I need a cat-shaped band-aid. Don't worry, she's right here.


Edited, not to change, but to add: About that "friends are temporary" thing... a certain friend (just, be obtuse for me, and pretend you don't know who I mean, k?) assured me that she is not temporary, or at least has no intentions of being such. Given that, maybe I can forget about the husband thing. Yuck. Never sat right with me anyway.

God has Skype?

Leigh and I were talking on Skype. I was asking if she thought I would get out of my recent depressed mood, something I truly haven't felt in years, if ever, and is honestly scaring me.

Me: Crying.

Her: You're ok.

Me: Am not. Crying.

Her: But you will be okay.

Enter cat.

Yes, you read that right. A cat came up on Skype. Leigh wasn't typing. I wasn't typing. A little, iconic cat with a pawing motion graced my computer screen for about 5 or 10 seconds.

Her: Whoa. I. Didn't. Do that.

Me: Did you see that?

It was gone. No more cat.

Me: No more crying, though. Smiling.

Her: God has Skype?

Some googling quickly revealed that "paw-like activity" on the keyboard produces a temporary cat on the screen... as in, when craziness is happening on your keyboard, similar to that produced by a cat walking across the keys (Elsie does this frequently), Skype assumes it's a cat and interprets the message accordingly.

Take it as a crazy coincidence or what have you, but Leigh and I think that God has Skype.

Here and gone

As I was driving to Bible study early this morning (shuddup; I call 8:45 early, okay?), I came up with an idea for a blog post. I started to outline it in my head, come up with examples... I even had a title.

And then I lost it.

Maybe it was about Bible study, and how God has worked everything out so perfectly. He found a way for me to get the book (the church provided it for me) that I couldn't afford. He made it comprised of women decades older than myself, with whom I am more comfortable than those my own age. He provided me with a "buddy," Heather, to guide me through the study, stick by me, make sure I'm okay in the large group. He has given me everything I need as I stretch myself and learn more about Him through the book of Esther.

Or maybe it was about the fact that, while I have nearly everything I want, I can't have the thing I want most. Leigh will be moving across the country for graduate school in the coming months. I know that God will use this move to glorify Himself and that I will grow closer to Him through it, but darn it, I don't like it. Not one bit. At all.

Maybe it was about the fact that I can be really, truly, downright mean sometimes. For example, in processing and dealing with Leigh's move, I have said some pretty nasty things to her. I honestly can't see beyond the end of my nose. It hits too close to my heart for me to be rational. She visited this past weekend (another wedding in the area), and we spent half the time with me melting down. Sigh. Sometimes I wish I could be better behaved around Leigh; the fact is that I'm so comfortable around her, that sometimes the ugly is what happens first. It needs to come out somewhere, and it knows it can safely come out around her. Still, that's not fair to her, and I always regret it.

Or was it to tell you that Elsie is doing better, knock on wood? She hasn't thrown up since Thursday night.

It could have been about my interview with my favorite pastor, Pastor Betsy, this morning, for my new book. I wrote up a list of questions to ask her. Mom bought me a little handheld digital voice recorder to use for the new book's interviews, and I made use of that. We chatted for about 45 minutes. She even told me that I'm "really cool," which I thought was, well, really cool.

No, it wasn't any of those. But I honestly can't remember what it was! I'll get back to you if and when I even remember... otherwise, I'll get back to you about something else in a few days, and whatever that thought was will come back around in its own time.

Sad day

How come when things go wrong, they really go wrong?

They put Cindy Lou Who down yesterday. No one called me. No one even told me when I got to work. I told them months ago that I wanted to adopt her first (just officially), and no one even gave me the heads up so I could do that. She died as nobody's cat, on paper. I don't like that.

And if it's this hard with a cat who never even lived with me, how will I ever survive it when it's Elsie?

One meal at a time

I have bad news. But don't fret, as there are also pockets of blessings within that bad news.

Elsie's inflammatory bowel disease is progressing, and in the last week, she has started to throw up almost everything she eats. We have increased her dose of prednisone (from 0.3 mL every 2 days to 0.5 mL everyday... a big increase) but to no avail.

I don't mind cleaning up throw up. Really. If it means keeping my cat, I'll clean up throw up 10 times a day. I mean, I do it all the time at work.

But here's the thing I keep asking myself: Is she suffering?

Thus far, the answer is definitely no. She's content. She throws up and then purrs almost immediately. She's acting totally herself.

But if things change, as Mom said, we'll have a decision to make.

As I said, there are little blessings in this. I came home tonight to no throw up! I think I have found the trick to Elsie keeping her food down, which is this: Feed her extremely small amounts, every couple of hours. We're talking 15 pieces of dry food or two teaspoons of wet food. More than that, and it comes back up.

How long can she go on eating like that? No way of knowing. Is the total quantity of food enough for her to maintain her weight? Time will tell.

I ask for your prayers for my girl. I know that no matter what happens, she has had the best of lives and will one day go to praise her Creator forever (yes, I believe that animals go to Heaven). Still, some more time with her here on earth would be wonderful....

Raindrops on roses and whiskers on kittens

Elsie P on my tall dresser (5 ft tall), watching over my room so I can sleep

Cindy Lou Who in her favorite place in the world

Cindy Lou Who climbing into my lap