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.